tag:blogger.com,1999:blog-39737724535864777532024-03-13T01:52:42.897-07:00Lauren's Heart: Hope~Love~FaithLaurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comBlogger93125tag:blogger.com,1999:blog-3973772453586477753.post-13404227605397071182018-07-08T11:16:00.001-07:002018-07-08T11:17:50.510-07:006 Years Later! Quick Update and New Ways to Follow My Journey!<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Hello All!</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
It has been almost 6 years since I have written a post for this blog! Crazy! I realize that many people still find this old blog of mine and read it, so I thought many may wonder how I am doing today. So much has happened since my last blog post in 2012 that I can not cover all of it. Here is just a small snip-it. Healthwise, I am still doing well. Both my heart and liver are still stable. I have run into medication issues with keeping my SVTs (rhythm issue) under control, but currently the medication and dose I am on right now is doing a pretty decent job. I have IBS and that has caused some issues over the years, but it has gotten better. I had my first heart cath in adulthood in Spring of 2013. All went well and nothing needed to be done, so just pictures and heart pressures were taken. My husband, Chris, and I moved to Texas in the Summer of 2014. My older brother, Ryan, got finally got married to my niece's mom, Ashley, in early 2016 which was totally awesome. Sadly, my dad passed away very unexpectedly and suddenly in May 2016, so I have been on an emotional roller coaster since then. My little brother, Aaron, graduated high school last June. Aaron is in college now and currently lives with my husband and I. I turned the big 30 last August and my sweet husband, Chris, totally spoiled me... even took me for a night at a nice resort. I will be turning 31 years old next month! Woah! My husband, Chris, and I have been married over 6 years now and last summer we bought our first house! Being first time homeowners has been a lot of work, but so very worth it. We still do not having any children, but we hope to have a child in the near future...if a few tests and a medication change (to a pregnancy safe med) goes well in the spring next year then we will get a "green light" to get pregnant. Exciting and a bit terrifying at the same time! Well, that wraps up a small snit-it update. If you would like to find out more about what I have been up to over the years and what my life is like now...here are a few ways you can keep up with me now: </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
My new blog is: www.specialheartbigdreams.wordpress.com </div>
<div style="text-align: center;">
My Facebook journey group is: Lauren B- Adult CHDer/Fontaner with Tricuspid Atresia, HRHS </div>
<div style="text-align: center;">
My Instagram name is: laurenbednarz87</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I will continue to keep up this old blog of mine so anyone can read it anytime, myself included as I love walking down memory lane sometimes. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Hugs and Blessings to all!</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span style="font-family: "verdana";"><a href="http://www.mylivesignature.com/" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background: none 0% 0% repeat scroll transparent; border-color: initial; border-style: initial; border-width: 0px;" /></a></span></div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSJrkrPFcju_WmU1GX2GkzUthK55gUeNG0_GBUuZBsn4zgcHg7ABdkcLd6n7m-JNUTQcrMOu1N2aqxJQS1ym-27WebTavbiQ2aT2NWm9ISS0v4X4o1i6Mc0E55dgZXje5GIXx-f1r-yCk/s1600/IMG_4275.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSJrkrPFcju_WmU1GX2GkzUthK55gUeNG0_GBUuZBsn4zgcHg7ABdkcLd6n7m-JNUTQcrMOu1N2aqxJQS1ym-27WebTavbiQ2aT2NWm9ISS0v4X4o1i6Mc0E55dgZXje5GIXx-f1r-yCk/s320/IMG_4275.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Me on my 30th Birthday last August.</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5TITJ3znDJkOrWHieHuGx1jnOjayrmLvaXPdOOpuIz7rjyiFY0T-NyAaoPn2S082ndXzG5bPL0toccI055dylx90ynth5qvpBDBtFUEyUmnMHJ5g_zfJLeLJZcsc_X_yh83LrU9m0qU/s1600/IMG_4568.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD5TITJ3znDJkOrWHieHuGx1jnOjayrmLvaXPdOOpuIz7rjyiFY0T-NyAaoPn2S082ndXzG5bPL0toccI055dylx90ynth5qvpBDBtFUEyUmnMHJ5g_zfJLeLJZcsc_X_yh83LrU9m0qU/s320/IMG_4568.JPG" width="240" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
My husband, Chris, and I taking our 2017 Christmas pictures in Nov. 2017</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-56354534064633672012012-08-24T23:42:00.000-07:002012-08-24T23:42:03.980-07:00Today I'm 25<div style="text-align: center;">
Today I turn 25years old... on August 25th! Turning the age that corresponds to you birthday day is called your Golden Birthday... so even more special... only happens once in a lifetime.</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxwM711GJtvNA15NMjeIljsF3veqMgD4j8OtyKVTD_LaqEJaGBgM7I4nnMPVKEp6Lp8t9rjitqLD_0lvafCMouJHs_RMwEfxf_91BNlo-nb1CiBzeb7wix0LTBMPdrwlj_rRRJF_Vtzs/s1600/OurWedding2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxwM711GJtvNA15NMjeIljsF3veqMgD4j8OtyKVTD_LaqEJaGBgM7I4nnMPVKEp6Lp8t9rjitqLD_0lvafCMouJHs_RMwEfxf_91BNlo-nb1CiBzeb7wix0LTBMPdrwlj_rRRJF_Vtzs/s320/OurWedding2.jpg" width="320" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I've been in the CHD (Congenital Heart Defect) community for about 6-7yrs, but this is the 5th birthday I'm blogging about. I went back and took a look at the last 4 birthdays I blogged on... my 21st, 22nd, 23rd, & 24th to see what I had to say and how far I've come in just that small few years. Here are some snippets from each one of those past birthday posts:</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>21st Birthday...August 25, 2008:</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>"...I'm going to saver today as you only turn 21 once. Though I still have mixed emotions; I know this is just another stepping stone in my journey."</i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>22nd Birthday...August 25, 2009:</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>"Today I'm 22years old!! Do I feel older? No. I do feel very grateful and blessed to be here, to be able to celebrate yet another year of my life... I was put here on this earth for a reason... I think part of that was to spread hope and awareness for CHDs. I also learned a lo about myself and about how to look at life... I mean I've always looked at life as special and to never be taken for granted... I meant in a way I learned to enjoy myself more and stop worrying about my health so much. I basically learned to LIVE more and boy that was hard, still a work in progress as having an anxiety disorder is hard, but I can't have that be my excuse for missing out on so much! I thank my loving boyfriend, Chris, for that..."</i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>23rd Birthday...August 25, 2010:</b></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<i>"Today I'm 23. Another year, Another milestone, Another miracle as I'm ALIVE! ...I don't feel another year older or wiser, but I have learned a lot. I always seem to be learning. I've been so proud of myself the past couple of years. There are so many things I've overcome and accepted. ... There is not one day that goes by that I'm not grateful or blessed for everything I've been given. ...I don't know what my future holds, but I know more procedures, pokes, prodes, surgery, and pain will be part of it, BUT I also know happiness, love, kindness, great times, wonderful people, family, and new exciting adventures will be a BIG part of it too..."</i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>24th Birthday...August 25, 2011:</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<i>"Every birthday since I have been older, though I'm not old, I've looked back at everything I've overcome. I remember the good times, the bad times, trails I've gotten through, and the triumphs. I have been though more in my short 24 years than most people will ever go through in their lifetime. I can say the things I've been through, my experiences especially living with a life threatening Congenital Heart Defect or "Half a Heart" has had a big impact on the person I am today. I've very proud of the person I am. ...Today is another milestone. Today is a day to remember the past, celebrate the present, and look to the future. I don't know what my future hold, but I will take it one day at a time (I say this a lot, but it's true)." </i></div>
<div style="text-align: center;">
<i><br /></i></div>
<div style="text-align: center;">
<b><br /></b></div>
<div style="text-align: center;">
<b><br /></b></div>
<div style="text-align: center;">
<b>**Today... August 25, 2012... I'm 25!!**</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Taking a look back at some birthday past and the things I wrote, I can say that it all rings true still. My birthday will always be a special day for me no matter how old I get. I will always celebrate my birthday. I made it another year. Another milestone. Another year of beating the odds and living my life to the fullest I can despite only having "half a heart". I am and always WILL be grateful and blessed for what I have. I take things one day at a time. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
This past year has been a whirlwind for sure! I graduated college and got married in December 2011... one day from each other. Than a week after graduating college and getting married in a small quick courthouse wedding I moved cross country (from Michigan to Northern California) with my new husband for his new job. This was not the first time I moved cross country with Chris (my husband)... but this time it was not just temporary, it was permanent and that was a HUGE adjustment for me to leave family and friends for good. Then I had to adjust to being married and everything that comes with that along with getting adjusted to new surroundings again. I was under lots of stress and had many big life changes. On top of that my heart issues got a bit worse... weird beats, varying heart rate, and chest pain... I knew the stress didn't help.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Then Chris and I researched out a new cardiologist which led me out of state to Georgia. Come April I met him and got more information about what my future heart wise might hold as well as what it will hold. Surgery again is in my near future as mentioned in past posts. That was a lot to take in. Than I has medication and dose changes which messed with my body. I've battled my high anxiety, slight depression, and OCD. Not having a job and being at home all day 5 days a week doesn't always help. I'm sure some would say I should get a job, but that is out of the question with my health at the moment and we only have one car. But I can work from home and I've been looking for a work at home job. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Let's say this year I dealt with a lot and many new changes and faced many new challenges. I haven't always been graceful or positive in getting through my bad days, but I try to pull myself up and keep moving forward as that is all you can do. </div>
<div style="text-align: center;">
<span style="font-family: Times, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<i><span style="font-family: Times, Times New Roman, serif;"><span style="background-color: white; color: #333333;">"When everything seems ok, but everything doesn't feel ok; those are the times when you need to have the most faith, show the most love, and give your biggest smiles because it will give us the most strength to keep going."<span class="apple-converted-space"> </span></span><span style="color: #333333;"><span style="background-color: white;">~ Me (Lauren Celeskey Bednarz)</span></span></span></i>
</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Despite everything there has been LOTS of good things this year to. I'm married to Chris, the love of my life, my best friend, my rock, and my soul-mate. Chris is always there for me and I could not have asked for a better husband. I know it's not always easy for him, but he is just amazing. I'm also a college graduate and that feels amazing. I'm SO incredibly proud of myself for that achievement and I will put it to good use as soon as I can. My little brother, Aaron, came to visit for 2 weeks this summer and that was awesome. I'm very close to my little brother and to spend time with him was just great. This year I also learned more about myself ... more so my strengths and my weaknesses. I've had a lot of time to think and ponder, which has helped me in getting my mind into what goals I want to accomplish. I've learned how to clean a bigger apartment and make lists of certain things to do each day. I've learned that I still very much love the simple things in life like spending time with Chris and just relaxing watching TV.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I'm proud of the person I am and I love the person I am. Ever year hold new life adventures, good and bad, that make you strong and make you wiser. This year has been a whirlwind like I mentioned, but this year has been the beginning of a new life journey with my husband and our life together. I can't wait for what our marriage will continue to hold in store for us. But I'm so grateful to have Chris in my life... we are in this for better or worse. We are our own small family of two and I love that. Plus, I gained more family by marrying him which means more love and support which has been great in the challenges and changes that we have already faced the past year.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Today I'm 25. Today is a special day to me. I still have many things I want to do and accomplish in my future especially writing and publishing my own book. I also will continue living my life to the fullest I can. Enjoying every moment I can. I will continue to smile and laugh whenever I can. I will continue to love my family and people I care about to no end as they are the most important things in my life... they are my support. I will continue to spread hope and CHD awareness. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I'm excited about that the next year holds...also a bit nervous and scared, but that is OK. One day at time... I'll face the beauty in each new day no matter what that day holds. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Sending heart hugs to all! </div>
<div style="text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP4AycY4JngfYyJqjI84h-HgwRzT5V4lBUTPQ7S6ullS6le2rNLjRA2hM1IySxrMd9EkTQqhVEJ6J_HL2rrPk2OlrmdRr3SLuVxScFOObDDSQEGwnWDD7s4xZdAWslrloOMqARtdV7Zuk/s1600/Aw.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP4AycY4JngfYyJqjI84h-HgwRzT5V4lBUTPQ7S6ullS6le2rNLjRA2hM1IySxrMd9EkTQqhVEJ6J_HL2rrPk2OlrmdRr3SLuVxScFOObDDSQEGwnWDD7s4xZdAWslrloOMqARtdV7Zuk/s320/Aw.jpg" width="308" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i>Chris & I in April this year. </i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<br /></div>
<br />
<div style="text-align: center;">
~~<a href="http://www.mylivesignature.com/" style="font-family: verdana;" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background-attachment: scroll; background-image: none; background-position: 0% 0%; background-repeat: repeat repeat; border: 0px;" /></a>~~</div>
Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-35958878581072282522012-08-15T20:15:00.004-07:002012-08-15T20:15:53.743-07:00Long Time..No Post. Quick Update.<div style="text-align: center;">
Hello Everyone! Long time, no post! </div>
<div style="text-align: center;">
I forget to update this... so sorry for no update in </div>
<div style="text-align: center;">
a few months.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
First off, I have a Facebook community page which </div>
<div style="text-align: center;">
I update a lot more often. For anyone who wants to </div>
<div style="text-align: center;">
keep up with me, my Facebook community </div>
<div style="text-align: center;">
page is called: </div>
<div style="text-align: center;">
<b>Lauren's Heart: Living a Full Life with "Half a Heart"</b></div>
<br />
<div style="text-align: center;">
<i><b><br /></b></i></div>
<div style="text-align: center;">
<i><b>**Here are some update on every aspect of my life:**</b></i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-I'm not having open heart/the Fontan Revision next year. Chris and I researched the Fontan Revision also called the Fontan Conversion a lot, we also researched hospitals, statistics, etc.... We picked to have the surgery at Texas Children's in Houston as they have done the most Fontan Revisions/Conversions in the country (maybe the world?) and have <b>great</b> statistics. Thing is I need to be checked out by them personally and we just don't have the money this year to fly down there...Chris also does not have anymore vacation days left either. So, we are saving up and going next year...probably in the spring. If they think I need the surgery, than it will be in 2014. So everything is pending. This surgery is NOT an emergency for me... I'm still well and pretty good quality of life even though my heart function has gone downhill a bit in the past 5yrs. I have an older Fontan which are worse than the newer versions even though all Fontans aren't great as the Fontan is not a fix or cure... they aren't made to last a long long time. Doing a Fontan Revision to a newer better long lasting Fontan while one is still doing pretty good and only few issues means less risk to me.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-We are also trying to save up so we can fly to Michigan (and Ohio where Chris' mom lives) next summer to visit our family as if I have surgery the next year, it will be awhile before we see them again. And we miss out family. So it's important we go and visit them.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-The new beta blocker I was put on in April ended up not working out. It was interacting with my blood pressure medication making me feel sick (lightheaded, nauseous, dizzy, etc), so we tried lowering the dose of my blood pressure medication and I still got the effects. I ended up being taken off my blood pressure medication ...but had to monitor my blood pressure by a blood pressure machine. I was fine without it for awhile, but after a few weeks I started getting chest pain, my heart would beat hard, and I had some weird beats here & there.... it threw off my sleep schedule and made me miserable. So last week I started back on my old beta blocker and felt a bit better after a few days. I started my blood pressure medication up again this week, but they said I only needed half the dose I was on before medication changes as off the blood pressure med, my blood pressure did better than they thought it would. So overall I'm feeling better and slowly my sleep schedule is getting better... work in process. Hopefully no more medication and dose changes for awhile... it can sure mess with your body.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-Overall I have good and bad days heart wise and mentally. I'm working on the mental part and looking for a psychologist to see again as they always seem to help me out with my anxiety disorder...plus I have some OCD now. I'm also trying to get back into writing and still plan on writing my own book. I'm also trying to find a hobby I like... going to try making yarn friendship bracelets again as I use to make them as a kid. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-My little brother, Aaron, who is almost 14 came and visited in early June (he lives in Texas with my mom). He was here for 2 week and we (Chris & I) really enjoyed having him. It was the first time I had seen him in over 6 months. I miss him already. He is a great kid. I love him a lot. We had a great time while he was here. Hope he lived California as it was his first time to California. :)</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-Since Chris and I could not afford wedding rings when we got married last year. We are starting to look for a wedding ring for me now. :) Money is tight, but it will be my birthday, Christmas, & 1yr anny gift kind of thing as wedding rings are not cheap. I'm excited about finally getting a wedding ring! There are so many to choose from... so it will be a tough pick, but I'm glad I get to choose the one I truly love. :)</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
-I turn 25 this month on August 25! Which is already next week! It will be my 3rd birthday away from family.. so I'll be missing family a little bit more like always. It will just be Chris and I, but it will still be a special day. I don't need anything material or a party for my birthday to be special. I decided that I'm going to start a small birthday tradition on doing a small Random Act of Kindness on my birthday starting this year. I till be small, but something I want to do. I'll post what I ended up doing and how my birthday went. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
****Well that's about it on updates for now. I do plan on a birthday post as well as a few blog posts of topics that might be interesting... when I have time I will... promise... it might take a few weeks to see another post though. Sending *heart hugs* to all!! </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Below is a picture of my little brother, Aaron, and I at Lake Tahoe this June during his visit:</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrahUrzZs886gXGIjwuDMfxDTE7qRnO3oa18fbiRtepFuiX633tWkePqXJHcP6zQKImeHcItidNlWPZ3DDP0ypKCCw3T09lTgYbVA1ma0VYzrYJCUujetu_xmjAtS0YGcyD7CeWfrAJs/s1600/pic8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijrahUrzZs886gXGIjwuDMfxDTE7qRnO3oa18fbiRtepFuiX633tWkePqXJHcP6zQKImeHcItidNlWPZ3DDP0ypKCCw3T09lTgYbVA1ma0VYzrYJCUujetu_xmjAtS0YGcyD7CeWfrAJs/s320/pic8.jpg" width="320" /></a></div>
<div style="text-align: center;">
<br /></div>
<br />
<div style="text-align: center;">
~~<a href="http://www.mylivesignature.com/" style="font-family: verdana;" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background-attachment: scroll; background-color: transparent; background-image: none; background-position: 0% 0%; background-repeat: repeat repeat; border: 0px;" /></a>~~</div>
Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-7192259055413607102012-05-30T13:00:00.002-07:002012-05-30T13:00:12.635-07:00Heart Warriors.... And More<div style="text-align: center;">
I recently read a book called <i>Heart Warriors: A Family Faces Congenital Heart Disease</i> by Heart Mom Amanda Rose Adams about her journey with her now 9yr old son, Liam's, battle with Congenital Heart Disease (he has HRHS like me.. but more complex than me).</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYUTa6c_S1dFHYQHz5lVTStQqoDOWpxMgaMvVmyhbJMdXe6OXS6I8R3QwEI2PJTSNAtkfjQmH-vONt4Rz1azhy4uspn9cyczdtT2uuyyaJlWVvCUnNVIJOZsRw78cEWxiCc5g_PSrNnA8/s1600/HeartWarriors.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYUTa6c_S1dFHYQHz5lVTStQqoDOWpxMgaMvVmyhbJMdXe6OXS6I8R3QwEI2PJTSNAtkfjQmH-vONt4Rz1azhy4uspn9cyczdtT2uuyyaJlWVvCUnNVIJOZsRw78cEWxiCc5g_PSrNnA8/s320/HeartWarriors.jpg" width="320" /></a></div>
<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I've known Heart Mom Amanda for about 4yrs, but only online through messages, forums, etc. Amanda started Hypoplastic Right Hearts which is an online support group for parents, family, and adult survivors of HRHS. I first "met" her through her support group/organization and for a year she let me have my own column in her newsletters called "Heart to Heart with Lauren" which I was SO honored to have had the chance to do that and even more honored to have "met" Amanda. I hope to one day meet her in person and give her a HUGE hug!</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I got her book right before my big cardiology appointment and in an emotional state. I picked it up and started reading it right away. But after my cardiology appointment and getting overwhelming information and news, I put the book aside for awhile. Tried to pick it back up a few times, but had to put it back down. Finally, last week I was able to keep reading without putting it down and I finished it this past weekend.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Heart Warriors is such a beautifully written book that is packed with such an emotional roller coaster that Amanda went on with her amazing warrior son, Liam. It is touching, inspirational, heartwrentching, and so much more wrapped into one. I know I'm probably one of a handful of Adult CHDers to read it, but I'm glad I did as it gave me a small glimpse into what Heart Parents go through. I know all Heart Parents cope differently and handle their situation differently, but many have some of the same emotions. I know my parents, who are Heart Parents, did not go through all the same emotions and feelings as Amanda, but while reading some of the things she went through were similar to what my parents had told me they went through. Reading this made me feel so much more appreciation for my parents and the hell they went through with me. Not that I didn't already have appreciation, but since I got a more understanding of things it made me even more appreciative. Heart Parents are hereos just like CHDers (even though I don't consider myself as a hero at all).</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
It was a hard book to read as I never like reading about those in pain in anyway as it breaks my mended heart to pieces. No one likes to read sad stories, but we can learn from other's challenges in life to help us in our life even in a very tiny tiny way. This book should make those NOT touched by a CHD be even more grateful for their health, their children's health, and their family's health. Those going through any hard time with an illness, this book will let them know they are not alone. Amanda not only offers her story of getting through every parent's worse nightmare, but offers tips and advice about grieving and getting through tough situations like this that one maybe thrown into.... even if it's for an Adult CHDer who has lived with a chronic illness their whole life those grieving tips and advice can be helpful as many of us don't fully understand everything and really "get it" until we are teenagers or young adults. I know I went through my own grieving process when I was about 16 and learned EVERYTHING about my heart and fully got that this was very serious... that my heart was fragile. It's hard and you go through many ups and downs... including some of the steps of greif Amanda mentioned like Anger, Denial, Depression, etc... I know I was angry and did go through a bit of depression. It's how you move forward to help yourself in order to continue to live a life and not miss out on all the good, the happiness, the joy, etc as life is already short as it is, that you don't want to miss out on living despite extremely hard times. I know my life has not been all crappy or sad... despite everything I've had a pretty "semi-normal" life with so much love, laughter, and joy.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Reading the last part of the book as Liam was older and understood more, I could relate to what Liam felt on many levels. I too hated tests especially Holter monitors and EKGs because of the stickies hurt coming off. Actually, I still hate them and hate the marks they leave. But it's part of my "normal" like they are part of Liam's "normal". Amanda mentioned that all these tests, pokes, prodes, surgeries, etc. are part of Liam's life that he doesn't know different and he takes it in stride and has this zest for life despite everything, yet pains her so much as she knows most people never have to have that be part of their "normal". That is exactly how my parents have always felt. They hate this is so "normal" to me, yet are so proud of me for taking it all in stride and not letting it get in the way of my joy for life. Us CHDers are special creatures not just for what we have been through, but that we can still love life, be full of life, be full of joy and zest... that we still dream and we act like any other person despite our challenges. I truly believe we are like this because we know that we fought SO hard to be here and we don't know how long we will be here, so we embrace life and LIVE to the FULL no matter how long we are here.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Amanda talked about Adult CHDers and the few that have now passed, yet have touched her life forever as well as the one's still here continue to give her hope and inspiration for her son. I know I'm included in her hope for her son and it warms my mended heart that I give hope to CHD parents. I love giving hope and love giving support where I can. Amanda talking about CHD adults who have touched her heart gave me warm fuzzy feelings inside to know how us Adult CHDers mean to CHD parents... that we are an important part of the CHD community and that we need to keep being part of it. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Amanda mentioned how us Adult CHDers should never be ashamed of our scars as they are badges of honor. I agree with that and have always thought of my scars of badges of honor. BUT some Adult CHDers do not like to show off their scars, but that does not mean they are ashamed of them... I know a few Adult CHDers who don't like to show off their scars, but they still love them and know what they stand for. Some Adult CHDers don't like their scars and that is OK. Just because they don't like them does not mean they are not grateful to be here and they know what they stand for... I know a few Adult CHDers who don't like them, yet are just as grateful to be here. The end thing is... all CHDers are different and cope with their CHD differently. Their scars are on their body and so they have a right to feel however they want to about them... all that matters is that they are grateful to be alive and grateful for the hell their parents/family went through to fight for them, that they realize they are beautiful with the scars, and that they are strong for what they went through. In high school I did not like showing my scars as I was a bit self conscious as I did not want people staring or asking... I especially did not want a guy to say I was not pretty because of them. After high school I decided that it did not matter what others thought of my scars... all that mattered was that I loved them and were proud to have them. Come to find out most guys do NOT care about the scars or that be the first thing they notice on a woman. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
What Amanda said at the end of the book happened to be something I'm so glad she mentioned and I totally agree with her wholeheartedly. Amanda talked about how Liam has dreams about his future, he has plans onto what he wants to do as an adult... one of them to be a dad. That Liam just keeps living and does not dwell on his special heart. Amanda said it's SO SO important to never crush his dreams and to keep letting him live HIS life to the fullest he can. She may not know how long Liam will be around for, but she owes it to him to let him life his life to the fullest while he is here. Amanda said that CHD parents should not put their fears on their CHDer and hold them back from living as "normal" or "semi-normal" they can. She said she knows Adult CHDers who call other Adult CHDers "cardiac cripples" because their parents held them back because of their fear of them dying or not growing up or not being able to do anything. I too know there are Adult CHDers like that. My parents did NOT know how long I would be around for... they were told before when I was little that there were no promises of me making it to a teenager or an adult. My parents knew that and they did have fear, but they let me live. They gave me as "normal" as a life as they possibly could... I went to school, I made friends, I had sleepovers, I went to parties, I was in activities, etc. I'm SO SO SO grateful my parents gave me that. Them doing that has helped me in being an independent adult. One thing my parents did do, was taught my how to be responsible for my health and ask questions which has also helped me GREATLY in taking my CHD into my own hands and making sure I do the best I can to be around for a long time. I can't control everything and I don't know what the future hold or how long I will be around, BUT I CAN control the care I receive, the questions I ask, the things I eat, the things I do, and the attitude I have.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Amanda's book <i>Heart Warriors</i> is SO worth the read. You may need tissues, but know that you will come out the other end with either learning something new, a new understanding, and/or knowing you are not alone... or at the very least if you are not effected by CHD, have been inspired to be a little more grateful and loving to your loved ones and your life.</div>
<br />
<br />
<div style="text-align: center;">
..........................................................................................................................................................</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>GIVEAWAY!!!</b></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Want a chance to own your own copy of Heart Warriors by my friend Amanda Rose Adams?</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Well I have TWO copies to give away!! That's right TWO!!</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Here is how you can be entered to win one.... you can get up to 2 entries:</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>1 Entry</b>- Leave a comment on why you'd like the book </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<b>2 Entry</b>- Leave a comment saying you got a NON CHD friend or a family member to "like" Amanda's Facebook, Heart Warriors page... make sure you have your friend or family member write a comment saying "Heard about your book through my friend or family member so and so" and leave your name in your comment so I can verify this when I look. Here is Amanda's Facebook book page link: <a href="http://www.facebook.com/pages/Heart-Warriors-A-Family-Faces-Congenital-Heart-Disease/137146163036780">Heart Warriors Facebook Page</a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
The Giveaway will END at 10pm Saturday June 9th, 2012.</div>
<div style="text-align: center;">
I will announce the winners on Sunday June 11, 2012.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Good Luck!! And get out there and spread the word about Amanda's Book,</div>
<div style="text-align: center;">
<i>Heart Warriors. </i>Be sure to check out Amanda's Website about her book: <a href="http://amandaroseadams.com/">Amanda's Website!!!</a></div>
<div style="text-align: center;">
<br /></div>
<br />
<div style="text-align: center;">
<span style="font-family: verdana;">~~<a href="http://www.mylivesignature.com/" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background: none transparent scroll repeat 0% 0%; border-bottom: 0px; border-left: 0px; border-right: 0px; border-top: 0px;" /></a>~~</span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-49911289072398819762012-05-26T16:46:00.000-07:002012-05-26T18:03:43.641-07:00Going Deep... Emotionally Deep<div style="text-align: center;">
It's been awhile since I last updated. In my last update I wrote how my cardiology appointment and liver appointment went which brought me news of another open heart surgery next year called the Fontan Revision. I don't usually share everything that I truly feel and is happening with my life especially my life with a complex Congenital Heart Defect or "half a heart" (Tricuspid Atresia, HRHS... 22yrs Post Fontan). Yes I share my journey, yet I don't share all of it... make sense? There is only so much I can share or have opted to share. I usually focus on the positives as I know that gives more Hope to all you CHD parents out there. But it's not all roses and butterflies living with such a serious medical condition. So, today is going to be one of those times where I'm going to "let it all hang out" to give a glimpse into the emotional side that all Adult CHDers have, but all cope with differently/ handle it differently. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Over the past year when I've been going downhill a bit more physically it's been hard... more emotionally. To know your body fails you to be able to do certain things you once did with more energy.. SUCKS. I've slowly been a bit more depressed, my anxiety disorder has worsened, and I now have some OCD issues. OCD in handwashing and touching things... totally has been out of control that I have to hide myself from seeing how my husband cooks dinner with meat, I won't touch meat now and have these feelings that I have it on my hands. This also goes with other things like I need to cover my hands to put the clean stuff from the washing into the dryer than wash my hands after, to sometimes feeling the overwhelming need to turn on the washer to wash the clothes all over again. My hands are so dry and can bleed. These are just a few examples. I go through soap and toilet paper like crazy, which drives my husband insane. My anxiety of getting sick, ending up in the hospital, etc. has been driving me up the wall and causing me nightmares. I break down and cry a lot usually over nothing. With my energy lower and not being able to do much around the apartment, I feel pretty useless. I HATE how my mind is doing this to me and I HATE that my heart feels the need to take energy from my body. I HATE HATE HATE HATE IT!!! I'm looking to find a Psychologist to see so I can get my mind in a better state as I hate the OCD and anxiety issues SO bad. SO I'm determined to help myself in that way. And so I'm not as much of a pain in the ass to live with even if I sometimes think I have a right to breakdown every so often.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
When I saw my new cardiologist, whom I love, he started to draw out my heart. I know my parents got that talk back all the way 24 years ago in a small room... now it was my turn. When he was drawing I knew where he was going to take the talk to. After all I had researched this guy out as I was looking for one of the best in treating Fontan patients especially older Fontan patients... he has almost 30yrs of Fontan experience and worked a bit with Dr. Fontan's colleague... so I knew I was going to hear some things I may not like. After drawing out my Fontan heart he started saying all the things that are not good about this route, than what is better about the newer Fontan routes, than how those are not great either but better. Than explained how all Fontans suck yet is the only thing that can keep us complex single ventricles alive for a long period of time holding off a transplant or well we all know the other option. Sitting there I felt like I got punched and was starting to hate my heart a LOT. That night I cried. But I have my amazing husband who was there to comfort me and throw out positives out there that made me feel better.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Since my appointment how am I doing? Honestly? It's a day to day thing. Sometimes I'm fine or OK... others I'm not and others is horrible. I get nightmares almost every night... some wake me up scared out of my mind and wanting to climb out of my body. Some wake me crying saying "I don't want to do this anymore". I've told my husband how unfair this is. I don't want this burden. I don't want another major open heart. My parents are the ones who basically remember everything from my first two open hearts other than maybe 2-3 memories from my second (my Fontan) that I remember. But I remember other surgeries and other hospital visits, and other pain that scared me as a child... but the bribes and comfort of my parents made things it ok and comforted me that everything will be ok; even though I know they hid their fears and feelings from me. Since I've been 16 and I've known everything... it has been my life and journey to take over... and it has not been easy to take it all on yourself. I remember at age 18 when the nurse called me back for my cardiology appointment my mom walking behind me got stopped by the nurse. "Mrs. Celeskey, Lauren is 18 this year, it's up to her if she would like you to come back." My mom just looked at me and I responded "I want to do this by myself and I'll make sure you get called back when the doctor comes in... ok?". She was ok with it, but I don't know how she really felt. But I KNEW I HAD to do this by myself... at least the tests part of it, not the doctor talk.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
The day of my appointment last month my mom called a bunch of times like she always does the past 4yrs that my husband has come with me instead of her. Since this was a new doctor, I put her on speaker to hear everything and ask questions. She gave her feelings and questions... some motherly things she felt came out and said she wanted to give him her number. He took it down but than said "I know your Lauren's mom, but she is an adult now and everything needs to be run by Lauren first. All decisions are Lauren's alone now. I know that is so hard when parents have done everything for so long...". My mom was ok with it and she supports me with any decision I make even if I decide not to have this surgery and just up medication and hold out for a transplant 10 some years down the road. I can't imagine the emotions my parents especially my mom has gone through and coped. My parents share a lot but I KNOW not everything and probably never will. I'm OK with that. But to know that it's ALL MY decision now... that anything I decide I'm now the one signing MY life away... that is SO scary. I remember my third eye muscle surgery at age 21 and it was the FIRST time I had to inform consent for my own life. No surgery is simple for a CHDer like me.... I remember them going over all the risks "blindness, bleeding...." and in my case because of my heart "rare possibility of death". They had to have cardiac team in the room and I had to be put me to sleep by a CHD Cardiac Anesthesia. I teared up signing the form. I remember the Anesthesiologist come in and smile saying "You sure have been through a lot, looked at your medical record." Yea I felt freaked out. But I came too hours later with my eyes bleeding and swollen shut... I know others surgeries like open heart are TONS more painful, but even your eyes swollen shut isn't very fun, but I had been through MUCH worse. I just didn't like running into walls.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Where am I going with all this? I'm just rattling off some things I've had to go through and have been scary for me. This is a life long journey and in the beginning it is ALL on the parents... and boy I love my parents and they are my heroes for getting me through hell and back. The Adult CHDers like my who are very blessed and lucky to make it into adulthood now have the full responsibility, but with "hopefully" support from family and friends. My parents STILL worry and since they have known for sure that the reality they have ALWAYS known of my having another open heart is now here, they are scared for me. But once we are Adults, this is now our journey and it's not always easy. Next year I will have a heart catherization and an open heart... first ones as an adult meaning I will be the one signing the informed consent knowing full well what I just signed will be putting MY life, MY hope for the future into strangers hands... something my parents did so many times.... it will come full circle and I will feel the gut punch they did in a different way. This will be hard. This sucks. CHDs SUCK!! I'm honestly scared and honestly feel I may not be strong enough. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
BUT you know what? I have my amazing husband whom will be thrown into one hell of a journey that he has never been on before... but he is SO amazing and supportive... my rock and best friend... he has always been there for me already. My parents will be there by my side, my brothers, my mother in law, and my best friend. I WILL get through this. I'm trying to keep positive as I have my whole life whether it was my heart or any other challenge I faced. I know things could worse. I will keep living to the fullest. I WILL NOT let my heart take joy, laughter, or good from my life!! I just wanted to share a small bit of the crappy side of being a complex CHDer. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I'm going to start to journal soon. I plan on publishing a book sometimes after my surgery. YES I AM planning a future!!! I won't let open heart stop me from that. I plan on also being a mom, getting a job, and spending many, many, many years married to the love of my life. <3</div>
<div style="text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPa79hrRkt2fI-u7nYefRQ8aWUGNsrDHtMcAqRgsEzLbS_XVKB5NLI2d6iDT_jUFBpmZ1fTad7Cdfkh-KhYoDrAsnOPPPa2BD5xmAMRwBWXbH00Gu6eXlhjseYw9qAdQtJfPlEqgdn8Uo/s1600/Aw.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPa79hrRkt2fI-u7nYefRQ8aWUGNsrDHtMcAqRgsEzLbS_XVKB5NLI2d6iDT_jUFBpmZ1fTad7Cdfkh-KhYoDrAsnOPPPa2BD5xmAMRwBWXbH00Gu6eXlhjseYw9qAdQtJfPlEqgdn8Uo/s320/Aw.jpg" width="308" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<i><span style="font-size: x-small;">My Husband, Chris, and I the day after my Cardiology appointment</span></i></div>
<div style="text-align: center;">
<br /></div>
<br />
<div style="text-align: center;">
<span style="font-family: verdana;"><a href="http://www.mylivesignature.com/" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background-attachment: scroll; background-color: transparent; background-image: none; background-position: 0% 0%; background-repeat: repeat repeat; border: 0px;" /></a></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-55144686298494394052012-04-30T13:29:00.000-07:002012-04-30T13:37:11.350-07:00Cardiology & Liver Appt. Results...& Important Information<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">Hello Everyone.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">As most of you know, my husband Chris and I traveled from Northern California to Atlanta, GA this past week to meet my new Cardiologist. We researched a LOT in trying to pick a new Cardiologist who is one of the best in single ventricle Fontan patients of all ages, but especially single ventricle Adults. All the reseach led us to Atlanta to a man who has almost 30 years of dealing with single ventricle Fontan patients of all ages... he is one of the best and is one of the few that know about the liver issues ALL Fontan-ers can get (He said it does not matter what Fontan you have). He said in about 5yrs that all Pedatric and Adult CHD Cardiologists SHOULD know about these Liver issues. My new Cardiologist is not just an Adult CHD Cardiologist, but he is also a Pediatric Cardiologist, and his interest of research is Fontan patients, so he has a LOT of knownledge.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">After saying all that, I will now move on to how my appointment went. It was on Wednesday (April 25), I got there and filled out papers. I was then taken back for an echocardiogram and a EKG... than Chris and I waited in a room to wait for the doctor. He came in and was super nice... awesome bedside manners... even asked if we were going to see any sights and talked about this favorites in the city. :) He also knows my first cardiologist I had for 22yrs very well... not only have they trained together, but are still in contact by phone and e-mail as well as goes out to dinner during pediatric cardiologist conferences. :) I was SO happy to hear that! </span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">He started off by drawing a picture of MY heart based off my surgical records which I have never seen someone do for me before... it was pretty cool... def a picture I'm keeping. He said based on all the records he has and this echo.. my plans for the future depended first upon my liver. Since my liver damage is mild and with me having pretty good function, but not great he HIGHLY suggests the Fontan Revision. This is why: Because I have pretty good heart function and mild liver issues, yet I HAVE been going slowly downhill over the years especially the past 5 or so than I will benefit from the surgery AND the mortality rate for ME would be 1-2%. The Pros of this surgery: It would give me better quality of life for a longer period of time... about 10-15yrs AND it would take some pressure of my liver, slowing the damage a bit. He said ALL Fontans cause liver damage BUT the new verisions do not put as much pressure on the liver as the older verisions like me... so what takes my verision like 20-30yrs to cause a lot of liver damage take the newer verisions about 30-40yrs in most cases (those were JUST EXAMPLE numbers)... obviously ALL CHDers & Fontaners ARE DIFFERENT, BUT this is based on research and the average. Based on research and what they know SO FAR, the Liver can a big issue as the heart as the liver is killing more of us than our heart... so liver "can" be the first to go.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">Now, he told me those who have severe livers do not have any other option other than Heart and Liver transplant. Right now I have a window of oppurtunity meaning: I'm doing well, I'm a low risk surgery and it has the most benefit for me. If I wait like 5yrs I may not be as in good of shape and the mortality rate goes up... and waiting longer than that my window will close and transplant is the only option. I could go down hill at the same rate meaning I could have 5 more years and still have this window, but he said CHDers can change at any time and NOTHING is gaurenteed for us... so take it while I have this change to keep living for a longer period. </span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">He told me with as good as shape I'm in which isn't even good good or great, having this surgery could also mean my liver stays more mild longer meaning IF IF I ever need a transplant it would only be a Heart and not Heart and Liver.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><strong style="color: #333333; line-height: 16px;">SO the plan for me:</strong><span style="color: #333333;"><span style="line-height: 16px;"> I'll be having the Fontan Revision next year... this will be my 3rd open heart surgery. I will have a heart catherization and Cardiac MRI a week before. The hospital stay is 7-10days and about an overall 2month recovery. Now, my beta blocker has been changed now which will help better control my heart rate issues than the one I was on for 7yrs. This next year and half will be tough on me emotionally and I don't want sympathy... I need love, support, and understanding... as well as prayers and positive vibes. I won't be on Facebook as often but I WILL STILL be here for ALL of you!! I WILL get through this and I PLAN on living till 80!! This is NOT a BAD thing as this will make me even healthier and by ME time for technology AND maybe NEVER needing a transplant!! This will also be hard on Chris. And money wise will be extremely hard as well. But we WILL make it!!</span></span></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">This has been a lot to take in, but I'm doing OK right now... I'll have good and bad days. But in the end I'm looking forward to being able to have more better years which considering I'm not doing horrible right now, I can't imagine the more energy I will have. Any tips or words of encouragment is well... tips about what to bring, what helped, etc. I know you guys will behind me all the way and I can't thank you ALL my amazing CHD community enough for ALL the love, support, hugs, prayers, well wishes, and sweet words.... it ALL means SO SO much to me!!</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><strong>***IMPORTANT FONTAN LIVER INFORMATION</strong>: This is only about 5yrs old and research is ongoing... most Cardiologists do NOT know about this YET, but in about 5yrs they SHOULD!! PLEASE READ and Pass on!!</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-The Liver damage ALL Fontan patients can develop is call Cirrosis of the Liver and this damage also puts us at a higher risk of a certain kind of Liver Cancer.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-The damage comes from the Fontan pressures and Vena Cava pressures which ALL Fontan verisions do, but the new ones not as bad.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-It is important that around age 12-13yrs old ALL Fontan patients should be seen by a Liver doctor with some Fontan knowledge.... starting at that age our Livers SHOULD be monitored EVERY year with a Liver MRI or Liver CT scan AND a full pannel blood work up... as we get into out mid 20s it SHOULD be EVERY 6months... I will now be getting a Liver MRI EVERY 6 months as well as blood work up to makes sure they keep a CLOSE eye on everything and could catch things early if possible.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-There is nothing PROVEN to help with the damage because it's mainly the Fontan pressures BUT anything that says "can" help the Liver is totally up to you as you never know.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-As we get older ALL Fontan patients Should watch their salt/sodium and protein intake as too much for each can put unneeded stress/pressure on the Liver.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">-Drinking a lot of water and keeping as active as we can are also important.</span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;"><br /></span></div>
<div style="background-color: white; color: #333333; line-height: 16px; text-align: center;">
<span style="font-family: Times, 'Times New Roman', serif;">**If you never heard any of this ASK your/your child's cardiologist AND do some research if you can... knowing information on our Liver and keeping a CLOSE eye on it could save our life one day** I'm JUST sharing what I've learned which I feel is EXTREMELY important information**</span></div>
<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<a href="http://www.mylivesignature.com/" style="font-family: verdana;" target="_blank"><img border="0" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" style="background-attachment: scroll; background-clip: initial; background-image: none; background-origin: initial; background-position: 0% 0%; background-repeat: repeat repeat; border-bottom-color: initial; border-bottom-style: initial; border-bottom-width: 0px; border-left-color: initial; border-left-style: initial; border-left-width: 0px; border-right-color: initial; border-right-style: initial; border-right-width: 0px; border-top-color: initial; border-top-style: initial; border-top-width: 0px;" /></a></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-77337040786111996162012-03-13T00:41:00.028-07:002012-03-27T20:24:14.802-07:00March Maddness! (Ok not really)<div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It has been about a month since I've posted.</div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I hope everyone enjoyed my CHD Awareness Week posts.</div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-style: normal; font-weight: normal; text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; "><b><i>So onto an update:</i></b></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I continue to have on and off heart issues... which is heart </div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">beats <span style="font-size: 100%; ">and/or heart rate </span><span style="font-size: 100%; ">issues... these can bring chest </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">pain, </span><span style="font-size: 100%; ">lack of energy, being </span><span style="font-size: 100%; ">out of </span><span style="font-size: 100%; ">breath, etc. I have good </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">heart </span><span style="font-size: 100%; ">days and </span><span style="font-size: 100%; ">bad. Lately, I've had a few more </span><span style="font-size: 100%; ">good </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">heart </span><span style="font-size: 100%; ">days, but </span><span style="font-size: 100%; ">have been </span><span style="font-size: 100%; ">really </span><span style="font-size: 100%; ">tired... I've been sleeping </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">12 </span><span style="font-size: 100%; ">or more </span><span style="font-size: 100%; ">hours </span><span style="font-size: 100%; ">a day... </span><span style="font-size: 100%; ">so </span><span style="font-size: 100%; ">not </span><span style="font-size: 100%; ">like me. </span><span style="font-size: 100%; ">Having </span><span style="font-size: 100%; ">off the </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">chart </span><span style="font-size: 100%; ">sleep </span><span style="font-size: 100%; ">patterns as </span><span style="font-size: 100%; ">well (which is </span><span style="font-size: 100%; ">not </span><span style="font-size: 100%; ">extremely </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">unusual </span><span style="font-size: 100%; ">for me I </span><span style="font-size: 100%; ">guess... I've </span><span style="font-size: 100%; ">always had </span><span style="font-size: 100%; ">some sort </span><span style="font-size: 100%; ">of </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">sleep issue). </span><span style="font-size: 100%; ">Than, </span><span style="font-size: 100%; ">a few </span><span style="font-size: 100%; ">weeks </span><span style="font-size: 100%; ">ago I woke </span><span style="font-size: 100%; ">up in a lot of </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">pain </span><span style="font-size: 100%; ">in </span><span style="font-size: 100%; ">my right </span><span style="font-size: 100%; ">side </span><span style="font-size: 100%; ">where </span><span style="font-size: 100%; ">your liver </span><span style="font-size: 100%; ">is... my </span><span style="font-size: 100%; ">heart rate </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">was all </span><span style="font-size: 100%; ">over the place, </span><span style="font-size: 100%; ">I </span><span style="font-size: 100%; ">had a </span><span style="font-size: 100%; ">blueish-purple tint, </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">the </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">chills. I </span><span style="font-size: 100%; ">called </span><span style="font-size: 100%; ">my husband, </span><span style="font-size: 100%; ">Chris, </span><span style="font-size: 100%; ">and he </span><span style="font-size: 100%; ">keep </span><span style="font-size: 100%; ">checking up </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">on </span><span style="font-size: 100%; ">me... </span><span style="font-size: 100%; ">if it </span><span style="font-size: 100%; ">had not </span><span style="font-size: 100%; ">gotten better </span><span style="font-size: 100%; ">than to the </span><span style="font-size: 100%; ">ER </span><span style="font-size: 100%; ">we </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">would </span><span style="font-size: 100%; ">go... </span><span style="font-size: 100%; ">but it went away </span><span style="font-size: 100%; ">and has not come </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">back...</span><span style="font-size: 100%; ">weird... </span><span style="font-size: 100%; ">I'm </span><span style="font-size: 100%; ">not </span><span style="font-size: 100%; ">even </span><span style="font-size: 100%; ">sure </span><span style="font-size: 100%; ">i</span><span style="font-size: 100%; ">f it </span><span style="font-size: 100%; ">was my </span><span style="font-size: 100%; ">liver, just a </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">s</span><span style="font-size: 100%; ">mall </span><span style="font-size: 100%; ">guess </span><span style="font-size: 100%; ">as </span><span style="font-size: 100%; ">I've </span><span style="font-size: 100%; ">been </span><span style="font-size: 100%; ">seeing a </span><span style="font-size: 100%; ">tiny </span><span style="font-size: 100%; ">bit </span><span style="font-size: 100%; ">of yellow in </span><span style="font-size: 100%; ">my </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">eye whites... </span><span style="font-size: 100%; ">but I've </span><span style="font-size: 100%; ">noticed </span><span style="font-size: 100%; ">that </span><span style="font-size: 100%; ">on and off </span><span style="font-size: 100%; ">for a </span><span style="font-size: 100%; ">few </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">years </span><span style="font-size: 100%; ">when </span><span style="font-size: 100%; ">I </span><span style="font-size: 100%; ">don't </span><span style="font-size: 100%; ">drink enough </span><span style="font-size: 100%; ">water... </span><span style="font-size: 100%; ">but </span><span style="font-size: 100%; ">it has </span><span style="font-size: 100%; ">been</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "></span><span style="font-size: 100%; ">there a bit </span><span style="font-size: 100%; ">more often. </span><span style="font-size: 100%; ">I've </span><span style="font-size: 100%; ">been </span><span style="font-size: 100%; ">drinking </span><span style="font-size: 100%; ">more </span><span style="font-size: 100%; ">water.</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Yes, this stuff is concerning to me... and YES I'm going </div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">to see a Cardiologist!... that is my next <span style="font-size: 100%; ">point actually. I </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">moved </span><span style="font-size: 100%; ">cross </span><span style="font-size: 100%; ">country </span><span style="font-size: 100%; ">(Michigan to Northern California)... I </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">was </span><span style="font-size: 100%; ">trying to set up </span><span style="font-size: 100%; ">an appointment with an </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">Adult CHD Cardiologist here about </span><span style="font-size: 100%; ">2hrs from me. Well, </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><span style="font-size: 100%;">they </span></span><span style="font-size: 100%; ">Secretary </span><span style="font-size: 100%; ">was </span><span style="font-size: 100%; ">not very nice, they only had </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">ONE </span><span style="font-size: 100%; ">cardiologist </span><span style="font-size: 100%; ">who </span><span style="font-size: 100%; ">was booked </span><span style="font-size: 100%; ">(and I bet </span><span style="font-size: 100%; ">overworked), </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">they did </span><span style="font-size: 100%; ">not </span><span style="font-size: 100%; ">take my </span><span style="font-size: 100%; ">concerns to </span><span style="font-size: 100%; ">heart, </span><span style="font-size: 100%; ">etc. So in talking </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">heart </span><span style="font-size: 100%; ">to heart with </span><span style="font-size: 100%; ">Chris, </span><span style="font-size: 100%; ">we decided </span><span style="font-size: 100%; ">with </span><span style="font-size: 100%; ">research </span><span style="font-size: 100%; ">we </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">would </span><span style="font-size: 100%; ">find one </span><span style="font-size: 100%; ">of the </span><span style="font-size: 100%; ">best </span><span style="font-size: 100%; ">Cardiologists we could find that </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">had a lot </span><span style="font-size: 100%; ">of </span><span style="font-size: 100%; ">knowledge on </span><span style="font-size: 100%; ">Adult single </span><span style="font-size: 100%; ">ventricle Fontan </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">patients, like myself.. </span><span style="font-size: 100%; ">knowledge to include </span><span style="font-size: 100%; ">the </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">complications </span><span style="font-size: 100%; ">we can </span><span style="font-size: 100%; ">face like liver issues </span><span style="font-size: 100%; ">(which </span><span style="font-size: 100%; ">liver </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">issues are </span><span style="font-size: 100%; ">something </span><span style="font-size: 100%; ">recent they </span><span style="font-size: 100%; ">found </span><span style="font-size: 100%; ">in the pass </span><span style="font-size: 100%; ">few </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">years). </span><span style="font-size: 100%; ">SO after </span><span style="font-size: 100%; ">much </span><span style="font-size: 100%; ">research over </span><span style="font-size: 100%; ">a few </span><span style="font-size: 100%; ">weeks time </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">talking </span><span style="font-size: 100%; ">to the </span><span style="font-size: 100%; ">first </span><span style="font-size: 100%; ">Cardiologist </span><span style="font-size: 100%; ">I had the first </span><span style="font-size: 100%; ">22 years </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">of </span><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">life (love </span><span style="font-size: 100%; ">that </span><span style="font-size: 100%; ">man...</span><span style="font-size: 100%; ">saved </span><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">life... a picture </span><span style="font-size: 100%; ">of </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">him and </span><span style="font-size: 100%; ">I on </span><span style="font-size: 100%; ">the right sidebar... </span><span style="font-size: 100%; ">I'm still in contact </span><span style="font-size: 100%; ">with </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">him via e-mail).... </span><span style="font-size: 100%; ">we </span><span style="font-size: 100%; ">found an </span><span style="font-size: 100%; text-align: left; "><span>Pediatric </span></span><span style="font-size: 100%; text-align: left; "><span>Cardiologist </span></span><span style="font-size: 100%; ">who </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">also is </span><span style="font-size: 100%; ">an </span><span style="font-size: 100%; ">Adult </span><span style="font-size: 100%; ">CHD </span><span style="font-size: 100%; ">Cardiologist </span><span style="font-size: 100%; ">with 28 years </span><span style="font-size: 100%; ">of </span><span style="font-size: 100%; ">Fontan </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">patient </span><span style="font-size: 100%; ">experience </span><span style="font-size: 100%; ">young </span><span style="font-size: 100%; ">and old </span><span style="font-size: 100%; ">that we </span><span style="font-size: 100%; ">feel </span><span style="font-size: 100%; ">is the </span><span style="font-size: 100%; ">man </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">take </span><span style="font-size: 100%; ">good care of </span><span style="font-size: 100%; ">me... </span><span style="font-size: 100%; ">downside: </span><span style="font-size: 100%; ">he </span><span style="font-size: 100%; ">is out of </span><span style="font-size: 100%; ">state, </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">in </span><span style="font-size: 100%; ">Georgia... </span><span style="font-size: 100%; ">SO </span><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">Georgia (Atlanta) </span><span style="font-size: 100%; ">we will </span><span style="font-size: 100%; ">be going in </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">April </span><span style="font-size: 100%; ">for an </span><span style="font-size: 100%; ">appointment. </span><span style="font-size: 100%; ">We are </span><span style="font-size: 100%; ">going more in </span><span style="font-size: 100%; ">debit </span><span style="font-size: 100%; ">by </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">doing this, </span><span style="font-size: 100%; ">but </span><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">AMAZING husband </span><span style="font-size: 100%; ">who is my </span><span style="font-size: 100%; ">best</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "></span><span style="font-size: 100%; ">friend, rock, support, </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">everything </span><span style="font-size: 100%; ">said my </span><span style="font-size: 100%; ">health </span><span style="font-size: 100%; ">is </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">number </span><span style="font-size: 100%; ">ONE and would fly </span><span style="font-size: 100%; ">me </span><span style="font-size: 100%; ">anywhere </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">go into </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">debit for </span><span style="font-size: 100%; ">me </span><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">get the best </span><span style="font-size: 100%; ">care. I am SO </span><span style="font-size: 100%; ">lucky </span><span style="font-size: 100%; ">to have </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">Chris </span><span style="font-size: 100%; ">in my life. </span><span style="font-size: 100%; ">God sure </span><span style="font-size: 100%; ">has </span><span style="font-size: 100%; ">blessed </span><span style="font-size: 100%; ">me </span><span style="font-size: 100%; ">despite </span><span style="font-size: 100%; ">many </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">challenges. </span><span style="font-size: 100%; ">April 25th is my </span><span style="font-size: 100%; ">appointment... </span><span style="font-size: 100%; ">I will </span><span style="font-size: 100%; ">also </span><span style="font-size: 100%; ">be </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">seeing </span><span style="font-size: 100%; ">their </span><span style="font-size: 100%; ">liver </span><span style="font-size: 100%; ">specialist </span><span style="font-size: 100%; ">that </span><span style="font-size: 100%; ">has </span><span style="font-size: 100%; ">Fontan patient </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">knowledge </span><span style="font-size: 100%; ">on that </span><span style="font-size: 100%; ">day </span><span style="font-size: 100%; ">as well. </span><span style="font-size: 100%; ">It </span><span style="font-size: 100%; ">will be a long </span><span style="font-size: 100%; ">day, </span><span style="font-size: 100%; ">but </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">worth it </span><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">get </span><span style="font-size: 100%; ">answers </span><span style="font-size: 100%; ">and a </span><span style="font-size: 100%; ">plan. </span><span style="font-size: 100%; ">We </span><span style="font-size: 100%; ">have </span><span style="font-size: 100%; ">our </span><span style="font-size: 100%; ">flights </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">scheduled... </span><span style="font-size: 100%; ">we are leaving </span><span style="font-size: 100%; ">the </span><span style="font-size: 100%; ">night of </span><span style="font-size: 100%; ">April 23rd </span><span style="font-size: 100%; ">and </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">staying </span><span style="font-size: 100%; ">till the morning of </span><span style="font-size: 100%; ">April 28th. </span><span style="font-size: 100%; ">I'm </span><span style="font-size: 100%; ">hoping </span><span style="font-size: 100%; ">for </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">answers </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">feel </span><span style="font-size: 100%; ">better. </span><span style="font-size: 100%; ">I </span><span style="font-size: 100%; ">have high </span><span style="font-size: 100%; ">hopes </span><span style="font-size: 100%; ">and faith.</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-style: normal; text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-weight: normal; line-height: normal; "><i>**We will fly in to see this Cardiologist once a year or when I need any <span style="font-size: 100%; ">surgeries... anything else I may need will be taken care of here where I live by a local Cardiologist with CHD knowledge (</span><span style="font-size: 100%; ">basically</span><span style="font-size: 100%; "> this local one will just be following my out of state Cardiologist orders).**</span></i></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;"><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">Despite everything I still continue to live my life to the fullest I can. I may not get much house</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">cleaning done, but I relax, watch TV... on the weekends when Chris is home, he will take me out</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">for walks, rent free Redbox movies, buy some ice cream or M&M's, play video games, etc. I still</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">push myself to do the grocery shopping as I enjoy getting out of the house by myself once a week even though it means to wake up really early with Chris to take him to work (we only have one car). I "try" doing even two things a day is an </span>accomplishment<span style="font-size: 100%;"> to me (like doing some laundry, cleaning the kitchen counters, and cooking a small easy dinner)... though some days I do nothing, but sleep and eat, but that is OK. Chris is proud that I'm hanging in there and doing the best I can with everything. I am SO SO grateful for Chris... he is my rock, best friend, love of my life, and has been so supportive even though I know it's not always easy on him. But we are a strong couple and I have faith that we can get through anything together! We have already been through a lot and are stronger for it. </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;"><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">I have high hopes and goals for my future still... I'm slowly doing great things. These "minor" issues and setbacks will not hold me back... and things can ALWAYS be worse, so I try not to complain... I still have pretty good health, a wonderful hardworking husband, a roof over my head, a few good friends (though they live out of state), some supportive family members (though they all live out of state), and an awesome CHD community who supports me.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;"><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">**Chris and I have been married over 3 months now! Time flies!**</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;"><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; "><i><b>Some more news:</b></i> I'm now a Heartwaves,org blogger! </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">I'm very </span><span style="font-size: 100%; ">honored </span><span style="font-size: 100%; ">to have been </span><span style="font-size: 100%; ">asked to be one! </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">Heartwaves.org is a website </span><span style="font-size: 100%; ">dedicated to helping, </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">supporting, </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">informing </span><span style="font-size: 100%; ">Congenital Heart Defect </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">(CHD) families. </span><span style="font-size: 100%; ">Check out the site.</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;">Here is my first blog post: </span></span><a href="http://info.heartwaves.org/bid/130077/An-Adult-with-CHD?utm_medium=social&utm_portalid=142212&utm_source=facebook" style="font-size: 100%; text-align: left; ">http://info.heartwaves.org/bid/130077/An-Adult-with-CHD?utm_medium=social&utm_portalid=142212&utm_source=facebook</a></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; ">I'm also looking into something I can do during the week... </div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; ">like joining a book club <span style="font-size: 100%; ">or something so I can meet others </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">age with a </span><span style="font-size: 100%; ">common interest so maybe I </span><span style="font-size: 100%; ">can make a </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span style="font-size: 100%; ">friend or </span><span style="font-size: 100%; ">two... which </span><span style="font-size: 100%; ">would be nice. </span><span style="font-size: 100%; ">We'll see what I can </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span style="font-size: 100%; ">find </span><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">I will share </span><span style="font-size: 100%; ">what I end </span><span style="font-size: 100%; ">up doing.</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><span><span style="font-size: 100%;"><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; text-align: center; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I will update again when I have other news to share. :)</div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Sending *heart hugs* to all!!</div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><span style="font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family: verdana; "><div style="text-align: center;"><a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-57025719537458969562012-02-14T00:37:00.001-08:002012-02-14T23:52:38.937-08:00National Congenital Heart Defect Awareness Day.. Heart Day!!<div style="font-family: Georgia, serif; font-size: 100%; font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="font-family: georgia; ">Today is Valentine's Day for most...</span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; "><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: left; "><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>But the Chris and I don't celebrate it.</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>Actually before I even met him I thought it</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>was just a Hallmark Holiday... and still do.</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>Chris feels th</span><span style="font-family: georgia; ">e same.</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><br /></span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>You should tell the people you love, yo<span>u love</span></span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>them everyday... and maybe do something nice</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>for them every so often. Don't just wait for Valentine's</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>Day to do it!</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "></div><div><br /></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>Today holds a different meaning for some...</span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span>including myself. Today is</span></div><div style="text-align: center; "><span> National C</span><span style="font-family: georgia; ">o</span><span style="font-family: georgia; ">ngenital </span><span style="font-family: georgia; ">Heart Defect </span></div><div style="text-align: center; "><span style="font-family: georgia; ">Awareness </span><span style="font-family: georgia; ">Day or Heart Day.</span></div><div style="text-align: center; "><span style="font-family: georgia; "><br /></span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7VgItuurL-X-ZiR9gvw_93DwXpwAkjJtLFyHtTKzjlZObkdJRuiNGBodAfMe3Q9Xo8_r_7KU7VcAFHh1Rv2H4P21PcRiKA_2eCJ1V_IiiAnjaqsEfprulTxy5Vf0AVopb3HyAMIAEYEg/s200/CHDsurvivor.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5709135143710864786" style="text-align: left; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 200px; height: 177px; " /></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><br /></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">Today celebrates ALL CHDers... young AND old... as OVER 50% of CHDers are Adults. Today we spread CHD Awareness, remember the CHDers young & old who have gone before us, the surgeons who made all the life saving CHD surgeries (the 1st one all the way back in the 1940's!)... & ALL CHD surgeons as well as Cardiologists..</span><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">... to thank the older CHDers for being guinea pigs (I'm part of an Adult CHDer group, so I will do just that... but in a way I was a guinea pig for Single Ventricle Fontan-ers... the Fontan had only been around 17yrs when I had it.)...AND today is a day to also celebrate CHD Parents because without them, their would be a whole lot less of us CHDers. ♥</span></span></div></div><div style="font-variant: normal; text-align: left; "><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span><br /></span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">Being an Adult CHDer... I thought I'd share how much </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">CHDers </span><span class="text_exposed_show" style="font-size: 100%; display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">especially the </span><span class="text_exposed_show" style="font-size: 100%; display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">complex </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">CHDers like myself go </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">through by </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">the time </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">they hit </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">my age... </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">and so you </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">know, my list is in the middle </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">as I know </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">MANY </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">CHDers </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">with longer </span><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">lists, </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); line-height: 18px; ">but others with </span><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">shorter ones... </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">t</span><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">he point is... </span><span style="font-size: 100%; line-height: 18px; background-color: rgb(255, 255, 255); ">ALL of our </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">lists is </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">more than most Adults </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">will </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">ever </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">go through </span><span style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">in a lifetime.</span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); "><b><i>My List... So Far</i></b> (I have Tricuspid Atresia, Hypoplastic </span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); ">Righ</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; font-size: 100%; ">t Heart Syndrome...22yrs Post Fontan):</span></div><div style="font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span class="text_exposed_show" style="display: inline; color: rgb(51, 51, 51); line-height: 18px; background-color: rgb(255, 255, 255); "><br /></span></div><div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 18px; ">-2 open heart surgeries</span></div><span class="text_exposed_show" style="display: inline; background-color: rgb(255, 255, 255); "><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-2 heart caths</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-RSV days after being discharged from my 1st OHS,</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">so I was re-admitted for about few weeks</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-1 blood clot in right leg after 2nd heart cath</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-2-3 code blues (1 for pulling out my ve<span style="font-size: 100%; ">nt tube...</span></div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; "><span style="font-size: 100%; ">so naughty, </span><span style="font-size: 100%; ">1 for a d</span><span class="text_exposed_show" style="font-size: 100%; display: inline; ">angerous tachycardia ep..)</span></div><span class="text_exposed_show" style="display: inline; "><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-3 eye muscle surgeries (I have eye muscle disease w/weak eye muscles)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-Walking Pneumonia once (that was fun... NOT)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-6 stitches in my bottom right lip (my fault... </div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">I was 7 or 8)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-BAD case of Chicken Pox</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-BAD food poisoning w/a few hour ER stay & IV fluids</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-Over 3 months of my life spent in patient in the hospital</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-About 100 Cardio appointments (maybe more)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-Hundreds of pokes, prodes, tests, an</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; "><div style="color: rgb(0, 0, 0); line-height: normal; text-align: left; "></div></div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-Hundreds of doctor appointments for my heart, eyes, back (I have congenital scoliosis), & primary (sick appts)... oh let's not forget the dentist </div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">AND 1 1/2 of braces</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-I've taken countless amounts of antibiotics</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-Been on at least 20 different medications in my </div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">life so far.</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; "><div><div style="color: rgb(0, 0, 0); line-height: normal; text-align: left; "></div></div>.maybe more, idk (NOT all at once though... usually 5 or 6 at the most at a period of time... right now I'm on 3)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-I've had countless night terrors since I was little (between ages 2-10 they were BAD)</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-I've been battling an Anxiety disorder for years... but I will NOT let it rule me!</div><div style="font-weight: normal; font-style: normal; color: rgb(51, 51, 51); line-height: 18px; text-align: center; ">-And currently having some heart beat and heart rate issues that I'm trying to get to the bottom of (have a history of Tachycardia/very fast hear rate as well.. on meds of it)</div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span><span style="line-height: 18px; "><br /></span></span></div><span style="font-weight: normal; font-style: normal; line-height: normal; "><div style="text-align: center; "><span style="line-height: 18px; ">AND out of everything I've been through... I have about 22 scars or badges of honor on my body... 12 on my chest from just my 2 open heart surgeries.</span></div><div style="text-align: center; "><span style="line-height: 18px; "><div><div style="color: rgb(0, 0, 0); line-height: normal; text-align: left; "></div></div></span></div></span><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; font-size: 100%; "><br /></span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; font-size: 100%; ">I am a PROUD CHD Survivor! ♥</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><br /></div><span><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">I may physically have "half a heart" but I do NOT have half a life!! ♥</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">********************************************************************</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><br /></span></div><div style="line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; ">The one thing I <i><b>LOVE</b></i> about being an Adu</span><span style="font-weight: normal; font-style: normal; font-size: 100%; line-height: 18px; ">lt CHDer, is</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">spreading Hope and supporting CHD families anyway</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">I can.</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><br /></span></div><div style="line-height: normal; text-align: center; "><span style="line-height: 18px; font-size: 100%; "><i><b>***</b></i>I'd like to share pictures and some information</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">about some of the AMAZING CHD kiddos</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">(and their AMAZING families!)...</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">(this is just SOME... I've made MANY</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">MANY friendships with CHD families I will ALWAYS</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">Cherish!!)</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><span style="line-height: normal; text-align: left; "><div style="text-align: center; "><span style="line-height: 18px; "><div><div style="color: rgb(0, 0, 0); line-height: normal; text-align: left; "></div></div></span></div></span></span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><br /></span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">I gave inspiration, love, support, and friendship which </span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">made </span><span style="font-size: 100%; line-height: 18px; ">my </span><span style="font-size: 100%; line-height: 18px; ">mended heart </span><span style="font-size: 100%; line-height: 18px; ">so full of joy... BUT what I got in</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; "> return </span><span style="font-size: 100%; line-height: 18px; ">was </span><span style="font-size: 100%; line-height: 18px; ">even MORE </span><span style="font-size: 100%; line-height: 18px; ">special to me... I received</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; ">inspiration, </span><span style="font-size: 100%; line-height: 18px; ">strength, </span><span style="font-size: 100%; line-height: 18px; ">friendship, hugs, </span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; ">and suppor</span><span style="font-size: 100%; line-height: 18px; ">t.</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><br /></span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">These CHDers and their families will FOREVER</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">hold a special place in my heart... and I've made some</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">FOREVER friendships!! </span><span style="line-height: 18px; ">I gave Hope to these families for </span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; ">th</span><span style="line-height: 18px; ">eir </span><span style="font-size: 100%; line-height: 18px; ">CHDers, </span><span style="font-size: 100%; line-height: 18px; ">that CHDers CAN grow up... (</span><span style="font-size: 100%; line-height: 18px; ">even those </span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; line-height: 18px; ">with </span><span style="font-size: 100%; line-height: 18px; ">"half a heart"), and live </span><span style="font-size: 100%; line-height: 18px; ">a VERY fulfilling life!!</span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><br /></span></div><div style="font-weight: normal; font-style: normal; line-height: normal; text-align: center; "><span style="line-height: 18px; "><3 ~ <3</span></div></span></span></span></div></div></div><div style="font-style: normal; font-weight: normal; line-height: normal; "><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><div style="font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; color: rgb(51, 51, 51); font-family: georgia; text-align: center; background-color: rgb(255, 255, 255); "><span style="font-size: 100%; line-height: 18px; "><br /></span></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXVpHiGiHdMgwH4sZkCPNI_eoHK58nzR4wArzxo5_cDctnU5P2ElOUY6Q579KJh-RaS_DyMQd0dGY4b9mEO9lOiYdBmLd3PaTOuk2RYK387wB4PAiXlsttBKIyml3huGT-TWaI2zZnzFw/s320/MeetingLondanII.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708912533312885666" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><p class="MsoNormal" style="text-align: center;"><span style="color: rgb(34, 34, 34); "><span><i>This is Londan. He has Hypoplastic Left Heart Syndrome (the opp of me). He was 10 when I met him and his family for lunch. We got along very well. He is full of life and an overall spunky kid. He thought it was pretty cool I had scars on my chest too. The thing that touched me was when his mom told me that he said in the car on the way home that since I’m missing the right side of my heart and he is missing his left, that together our heart makes a whole heart. Beautiful. Today Londan is 12 years old, thriving, still full of life, and still full of smiles. </i><o:p></o:p></span></span></p></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><div style="text-align: center;"><span><3 ~ <3</span></div><div style="text-align: center;"><br /></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 220px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxCtH0bN6nYY9X1LcnrT78iL-ROImUVUt4cYreR03fAHgHdde7QdBwC_3l6PWdSZBqnqUAsaEfD3MjEr5m5akVlLOkngMGQoAbtB5ojlpCYqo4E2gWcznZGm5wRbZkA6_gB0Ij2JnFG18/s320/Meeting+the+Betos+018.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708912444074337874" /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><div style="text-align: center;"><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><i>This is Megan. She has Tricuspid Atresia, Hypoplastic Right Heart Syndrome like me. She was 6 when I met her and her family. She was very shy at first, but that is ok… actually it took me back to my childhood as I was super shy too. She opened up towards the end of dinner and hopped on my lap. She can’t wait to meet me again and I can’t wait to meet her again. Megan is just full of life! Today she is in 1<sup>st</sup> grade, doing awesome, living life, and will be 7 soon.</i></span></span></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><3 ~ <3 </span></span></p></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgas7l9uXwFyJFftBZXs3qaVl3zm4qooixQbRJzdPV6cuQK5oMMqU1JgkDMXksxKfFy58IdfnMJJ1MDAzZYJeWnrikIbYcOhY8GWawpqdyiY_ozKDbNUnqH17RKrgQVon8BAZcupzuRCd8/s320/Meeting+C%252C+K%252C+R.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708912014431968690" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 240px; height: 320px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><div style="text-align: center;"><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><i>This is Kyleigh. She has Tricuspid Atresia, HRHS like me. She was 8 when I met her and her family. I had known her mom for a year before we got to meet in person. Her mom, Crisse, and I talked ALL the time on the phone and I talked to Kyleigh a lot on the phone to… so when we FINALLY got to meet in person… it was AMAZING! I love Kyleigh like a little sister and her mom, Crisse, has become one of my best personal friends. I wish we lived closer to each other though… but we talk all the time via phone. Kyleigh is so full of life and just a spit fire! Love her! She is 9 years old now and considers me her big heart sister forever… and that makes my heart melt. Kyleigh is full of life and full of smiles!</i><o:p></o:p></span></span></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><3 ~ <3</span></span></p></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1uAcLFUrQhvJR_pIEhbMvsHkiW4B-Hr-205kU4NaMdqATsgxjbQUCmNzAHwnNLbXxUsPkfGInXvxWaKqsHVcvU5pNpy1Go7eXW-3PdRU5bqY6nVSByAR6WJ7i3O27SakaSVsx1ONZWgs/s320/Meeting+Hope+%2526+Paula+W+3.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708912287735819250" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 272px; height: 320px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; "><div style="text-align: center;"><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><i>This is Hope. She has Hypoplastic Left Heart Syndrome (opp of me). I knew her mom via internet since before Hope was even born! Hope’s mom found my blog, left a comment, and from there we have had a nice friendship and I feel so special I could offer her hope for Hope. Hope was almost 2 when I met her. She was a tiny thing, which I was tiny too. But boy lots of energy, curiosity, and love for life is packed into such a small package. She is on the go! My favorite moment was when I showed her my scar, than pointed to hers… she knew as she pointed at mine than at hers. She is 2 now and doing amazing despite some weight gain issues. </i></span><span style="font-family: Arial, sans-serif; "><o:p></o:p></span></span></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span><3 ~ <3</span></span></p></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0MbwX1_C-ZpgbaFhpUU5El-KeJ6H50yt9kmRV2l5NBzcSN2mfBrVph-v9UHgpIuEngN54vhyphenhyphenXGFcJpQ-5ROqAiqB7S2QFtsa4fksgROOEZZcvUWRKqug_dTGSWNAmdkETspwypnV_0lc/s320/IMG_0583.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708911588193054642" style="font-family: Georgia, serif; font-size: 16px; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-style: normal; "><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; "><p class="MsoNormal"><i><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">This is Joshua. He has complex CHDs. He was 2 when I met him. He played the whole shy yet I’m going to still look and smile at you cute game… adorable. He was more than happy to sit on my lap, smile at me, hug me… watch out Sarah he is a ladies’ man hehe. ;) Joshua is full of life and is wise beyond his years as you can tell through his eyes. </span></span></i></p></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="line-height: 18px; "><3 ~ <3</span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="line-height: 18px; "><br /></span></div><div style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-family: Georgia, serif; margin-right: auto; margin-left: auto; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3UwJ-82lMGAgXz0qgUzvtof3CqfYFEkY0I2yTQVS4dGDsqt8bLZqwi5zLGvtIJ5CMvXlsQyy2-qS4LetVMKQCMQV1O_MlC6YQbFmvgSIsBc-eHYklNf0fENODIjmX9sNMV7xgKd9Rkg4/s320/IMG_0587.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708911690677630162" style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></span><i><span><span style="color: rgb(34, 34, 34); ">This is Bayden. He has “pink” Tetrology of Fallot & 3 other CHDs. He was 2 when I met him. He is a spunky little thing! He is curious, </span><span style="color: rgb(34, 34, 34); ">adventurous</span><span style="color: rgb(34, 34, 34); ">, yet gives you a smile that melts your heart. Brittany you have a ladies’ man too hehe. ;) Bayden likes what he likes and has a kind spirit. He enjoyed sitting on my lap and taking pictures with me. He is full of life and full of energy! Amazing!</span></span></i></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><i style="font-size: 100%; "><span style="color: rgb(34, 34, 34); "><br /></span></i></div></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><3 ~ <3</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKVtpNaUXMXZM4q6jhQlF4D4MVxT9N8bYP7iKKEzK95NlzUAJJ07MNkGRue5jPnGSfme4I0i3kLLu2aivCNgM_DM5Qhl4g-SEqhtXH7WUXtA471Z2ZnOD63W0WZeQaST4BHfH37i_w-bo/s320/IMG_0592.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708911808576452354" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 240px; height: 320px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><p class="MsoNormal" style="text-align: center; "><span style="color: rgb(34, 34, 34); "><i><span>This is Jilliana. She has HRHS like me. She was 2 when I met her. She is adventurous, curious, and full of energy. She smiles a lot and knows what she wants. She was so sweet and enjoyed sitting on my lap… she seemed to like me. Jilly has a love for life and exploring. A cute moment during lunch is her eyes lightening up at the big cookie we gave her, yet she enjoyed eating my chips more… she sure loves to make friends… what a cutie. Amazing little girl she is.</span></i></span></p><p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; text-align: center; "><span style="font-family: georgia; "><br /></span></p><p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; text-align: center; "><span style="font-family: georgia; "><3 ~ <3</span></p></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><span style="font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family: verdana; "><div style="text-align: center;"> ~~ <a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a> ~~</div></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-66996204110513770662012-02-13T12:53:00.000-08:002012-02-14T00:34:51.842-08:00Connected By Heart ~ Day 4 ~ HOPE<div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; "><b><i>Connected By Heart</i></b></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">HOPE.</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">Despite all the sadness and heartache in</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">the Congenital Heart Defect world...</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">their is HOPE...</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">LOTS of HOPE!!</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">-Over 50% of CHDers in the world today are Adults!!</span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">-There is OVER 1 Million CHD Adults alive today</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">in the United States Alone!!</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><span>-About 80-85% of CHDers make it to Adulthood!!</span></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">So there is HOPE!!</span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">I myself, as you know, am a adult single</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">ventricle CHDer... and proud of it!!</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;"><br /></span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">I made a Hope post last year around</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span style="line-height: 14px;">this time... you can read it here:</span></span></div><div style="line-height: normal; font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><a href="http://laurensheart.blogspot.com/2011/02/hope-here-are-17-chd-adults-including.html">http://laurensheart.blogspot.com/2011/02/hope-here-are-17-chd-adults-including.html</a> </div><div style="line-height: normal; text-align: -webkit-auto; font-size: 100%; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; "><span><span style="line-height: 19px;"><br /></span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(34, 34, 34); line-height: 19px; text-align: -webkit-auto; font-size: 100%; ">Us CHD Adults CAN LIVE pretty "Semi-Normal",</span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(34, 34, 34); line-height: 19px; text-align: -webkit-auto; "><span>fulfilling, Happy lives!!</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(34, 34, 34); line-height: 19px; text-align: -webkit-auto; "><span><br /></span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(34, 34, 34); line-height: 19px; text-align: -webkit-auto; "><span><b><i>Hope</i></b> = is a virtue defined as the desire and search for</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(34, 34, 34); line-height: 19px; text-align: -webkit-auto; "><span>good...difficult, but NOT impossible to attain</span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="background-color: rgb(255, 255, 255); font-family: monospace; font-size: 13px; line-height: 19px; text-align: -webkit-auto; "><br /></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px; "><span>My parents always told me to not</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px;"><span>let my "half a heart" CHD define me...</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px;"><span>The always wanted me to <i>DANCE</i> (LIVE)</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px;"><span>every chance I could in life since I was given the</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px; "><span>chance </span></span><span style="font-family: georgia; line-height: 25px; ">to be able to grow up...</span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px;"><span>So to all the CHDers, young and old:</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px;"><span>No matter how long you are here...</span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; text-align: center; "><span style="line-height: 25px; "><span><i>DANCE</i> when you get the chance!!!</span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-size: 100%; text-align: center; "><span><span style="line-height: 25px;"><br /></span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; text-align: center; "><span><span style="line-height: 25px;"><iframe width="560" height="315" src="http://www.youtube.com/embed/RV-Z1YwaOiw" frameborder="0" allowfullscreen=""></iframe></span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-size: 100%; text-align: center; "><span><span style="line-height: 25px;"><br /></span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-size: 100%; text-align: center; "><span style="line-height: 25px; "><b><i><span>***Here are 4 stories of HOPE!!...</span></i></b></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: -webkit-auto; "><span><span style="line-height: 19px;"><br /></span></span></div><div style="font-size: 100%; line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; text-align: -webkit-auto; "><span><span style="line-height: 19px;"><br /></span></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><b style="font-size: 100%; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; "><i>Cissy's Story:</i></b></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">I was diagnosed with Tricuspid Atresia when I was three months old and had my first open heart surgery very soon after. Tricuspid Atresia is a type of congenital heart disease in which the tricuspid heart valve is missing or abnormally developed. The defect blocks blood flow from the right atrium to the right ventricle. I'm not sure exactly what when on during that first surgery. I believe there was a vein taken from my right arm and put somewhere in my heart. Now you can't get a blood pressure reading from my right arm. </span><br style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><span><br /></span></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">Years went by and all the time I was waiting to have my second surgery. Have you ever heard that saying.. When you’re young you think you’re going to live forever? Well I think that is a luxury kids with CHD never have. As a child I was always sick. Almost any kind of physical activity made me have arrhythmias and then I would always throw up. Just walking to the playground at my elementary school was hard on me. I hated PE because there was no way I could keep up with the other kids and if I even tried I would get sick. When I was seven I went in for my second open heart surgery. The fontan which if you don't know is a palliative surgical procedure used in children with complex congenital heart defects. It involves diverting the venous blood from the right atrium to the pulmonary arteries without passing through the morphologic pulmonary ventricle. I'm not really clear about what all that means myself but it was done to me and to my care bear. He was all bandaged up too when we came out of surgery. Even after this surgery I still could never keep up with the other kids and became sick very easily. I wish people would have been more educated about my heart condition back then so that school would have been easier for me. Even through middle school and high school I had a hard time keeping up with other kids my own age. I did eventually drop out of high school, but I think if there had been some exceptions made for me it would have been easier for me to try and finish.</span><br style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><span><br /></span></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><span>The older I got the more I learned to do what I could and to take my time doing things. I worked full time at a retail store until I was around 25. I had started feeling really bad so I went to the doctor and found out my heart had become enlarged and I was going to have to have another open heart surgery. My first thought was just not to do it. I really thought I could be content with just living until I died which the doctor said would be about a year form then if I didn't have the surgery. I know how crazy this must sound but all my memories from being in the hospital before were bad and I didn’t want to go through that again. With very much love and support from my friends and family I did have the surgery in June of 2002.</span></span></div><span style="line-height: normal; font-family: Georgia, serif; font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; "><span style="margin-right: auto; margin-left: auto;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIpn5sBns8aQyjh6jThi9HG7TaedPQglK3w710YU7NT4qdvlJj90L7FmopmfY9e-P7lsbY8oPA2SwzUNxN0x7GhmMuTuQyzhzgXqZJU0gbBhdVKPVo6frFWXyOBPwmrwbiXzerSwBTJRQ/s320/Cissy.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708733334605261778" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 229px; height: 320px; " /></span></span><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; font-family: Georgia, serif; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 11px; line-height: 14px; "> </span><span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">After the surgery my doctor said that my heart had become as big as a basketball so they'd had to cut some of it out and do some reconstructing to it and I had a maze p</span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">rocedure done. In maze heart surgery, a heart surgeon creates multiple cuts into the upper part of your heart (atria) in an intricate pattern, or maze. Your surgeon then stitches the incisions together to produce scars. Because the scars do not carry electrical signals, they interfere with stray electrical impulses that cause atrial fibrillation. This restores your heart's regular, coordinated heartbeat. I had a hard time recovering from this surgery. I was in the hospital for almost two weeks. After coming home it took me a long time to recover in general. I did not go back to my full time job, I didn’t physically feel like I could handle it anymore.</span> </span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; line-height: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); " ><br /></span></div><span style="font-variant: normal; font-style: normal; font-weight: normal; font-size: 100%; color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); " ><div style="text-align: center;">I was okay for a while after this surgery but then I got really sick in March of 2003. My stomach got really huge and I couldn't get out of the bed some days. So again I went to the doctor, and if you don't know I've had the same cardiologist since I was three months old . We've been through a lot together and kind of have a love hate relationship. I think because I'm not a good patient. I always want to do what I want to do not always what she thinks I should do. I do trust her with my life and she is usually right, but this time in the hospital she didn't know what was wrong with me. So I was admitted and stayed for a week while they ran tests on me, and I've had so many catheterizations that they can't go through my legs anymore due to scar tissue. They have to go through my neck which really hurts if they don't knock you out all the way.. After a week they decided I was in heart failure and that all the fluid from my heart was just kind of sitting at my stomach instead of going to my ankles like most people. I was sent home and told to live like a slug until I could come back the next week and have my pacemaker implanted. So on April 3, 2003 I got my first pacemaker. I have to say I love my pacemaker. I can’t remember the last time I really got sick from doing physical activity, I wish I had a pacemaker my whole life. </div></span><div style="font-variant: normal; font-size: 100%; "><div style="line-height: normal; font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">In May of 2004 totally against the advice of every doctor at Duke I gave birth to my son. The do</span><span style="font-size: 100%; color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><span>ctors only gave me a fifty percent chance of survival during childbirth. They didn’t know how my heart would react to pregnancy. I had a hard pregnancy and was on bed rest for most of it. I had to go to Duke every week for blood work and an echo sound. My cervix became incompetent and my doctors would do nothing to stop the baby from coming because they felt my body knew I couldn’t handl</span></span><span style="font-size: 100%; color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">e the pregnancy and was trying to get rid of the baby on its own. I had my baby when he was just 24 weeks along, he weighed 1 pd. 11ozs. He is seven now and doing very good. Since then I've had my pacemaker changed once, in October of 2010.</span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; "><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; "><div style="font-style: normal; font-weight: normal; text-align: center; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyJGmXjTKQD-99cIRM5AKa50ZvDHxR3rOGApzChGtaBbUya491cfxW_fyQsdmaBwR5qdwTQ0WHu9oSwGp7jOlqsXygzr4quZjbP0WOgTpyLN8oIzk6cy-gclIw9V-bZGNvAfkgSfLj7lg/s1600/2.jpg" style="text-align: left; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyJGmXjTKQD-99cIRM5AKa50ZvDHxR3rOGApzChGtaBbUya491cfxW_fyQsdmaBwR5qdwTQ0WHu9oSwGp7jOlqsXygzr4quZjbP0WOgTpyLN8oIzk6cy-gclIw9V-bZGNvAfkgSfLj7lg/s320/2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708733408220318850" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 249px; " /></a></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><span>I pray every day that my health will continue to be stable and I will get the chance to see my son grow up.</span></span> </div><div style="font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span><b><i><br /></i></b></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span><b><i>Yasmin's Story:</i></b></span></div><div style="font-style: normal; font-weight: normal; "><p class="MsoNormal"></p><div style="text-align: center;"><span><span style="color: rgb(34, 34, 34); ">Hey There. My name is Yasmin and I am 26 yrs old, and I was born with a heart condition called<span class="apple-converted-space"> </span></span><a href="http://congenital-heart-defects.co.uk/tetralogyoffallots.aspx" target="_blank" style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><span style="color: rgb(17, 85, 204); ">Tetrology of Fallot</span></a><span style="color: rgb(34, 34, 34); "><span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">. I have had two open heart surgeries and I had my first one at the age of three and my second at the age of twenty.<span class="apple-converted-space"> </span></span></span></span></div> <div style="text-align: center;"><span><br /></span></div> <span><span style="color: rgb(34, 34, 34); text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">When I was born, my parents were wondering why I wasn't a pink baby! I was a "blue baby" and I stayed blue for a very long time. My Drs ran all the tests such as<span class="apple-converted-space"> </span><a href="http://congenital-heart-defects.co.uk/noninvasivetests.aspx" target="_blank"><span style="color: rgb(17, 85, 204); ">X-rays</span></a><span style="text-align: left; "><span style="text-align: -webkit-auto; ">,<span class="apple-converted-space"> </span></span></span><a href="http://congenital-heart-defects.co.uk/noninvasivetests.aspx" target="_blank"><span style="color: rgb(17, 85, 204); ">ECHOs</span></a><span style="text-align: left; "><span style="text-align: -webkit-auto; ">,<span class="apple-converted-space"> </span></span></span><a href="http://congenital-heart-defects.co.uk/noninvasivetests.aspx" target="_blank"><span style="color: rgb(17, 85, 204); ">EKGs</span></a><span style="text-align: left; "><span style="text-align: -webkit-auto; ">, and<span class="apple-converted-space"> </span></span></span><a href="http://congenital-heart-defects.co.uk/noninvasivetests.aspx" target="_blank"><span style="color: rgb(17, 85, 204); ">CT scans</span></a><span style="text-align: left; "><span style="text-align: -webkit-auto; ">; they didn't find anything in the X-rays, but when they did the ECHO and the EKG they discovered that I had<span class="apple-converted-space"> </span></span></span><a href="http://congenital-heart-defects.co.uk/ventricularseptaldefect.aspx" target="_blank"><span style="color: rgb(17, 85, 204); ">VSD (Ventrical Septal Defect also known as pinhole)</span></a><span class="apple-converted-space" style="text-align: left; "><span style="text-align: -webkit-auto; "> </span>and ToF (Tetralogy of Fallot).<span class="apple-converted-space"> </span></span></div></span><span class="apple-converted-space"><div style="text-align: center;"><br /></div> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;"><span class="apple-converted-space" style="text-align: left; "><span style="text-align: -webkit-auto; ">I was closely monitored while growing up and I was fine until the pinhole in my heart didn't close on its own and the Drs had to surgically close it. My first surgery was at<span class="apple-converted-space"> </span></span></span><a href="http://www.childrenshospitalla.org/" target="_blank"><span style="color: rgb(17, 85, 204); ">Children's Hospital in Los Angeles</span></a><span class="apple-converted-space" style="text-align: left; "><span style="color: rgb(34, 34, 34); "><span style="text-align: -webkit-auto; "> </span></span><span style="color: rgb(34, 34, 34); ">in 1988 and the Drs closed my small VSD (ventrical septal defect) and they put a homeopathic conduit it to connect the left and right side. I was told that because I was growing that the child's size wouldn't fit and this is why the Drs put an adult conduit in. On a return visit for a check-up I got the petal stuck on the sink (they had the ones where you stepped on the petal and washed your hands), and so they moved us to a new room. In the second room I was playing on the bed and my Dr had his hand on my head so that I wouldn't bump it. The bed had a storage area under it. I was doing great, and the Drs said " I would have to have a second one at the age of thirteen" but I didn't need it then because I was growing perfectly.<span class="apple-converted-space"> </span></span></span></div></span></span><span class="apple-converted-space"><div style="text-align: center;"><br /></div> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;"><span class="apple-converted-space" style="text-align: left; "><span style="text-align: -webkit-auto; ">By the time I was twenty I was already showing signs of needing another open heart surgery, and the reason that my Dr and my parents came to that conclusion was because I was pale and my blood pressure rose (it was 300/91, or 200/90). I was 20 years old and on blood pressure meds. In November of 2005 I went in for my second open heart surgery where they replaced my conduit and they also put a metal stent in. They used the stent to widen my arteries that were small and narrow and they also replaced my pulmonary valve. This was performed at<span class="apple-converted-space"> </span></span></span><a href="http://www.ucla.edu/" target="_blank"><span style="color: rgb(17, 85, 204); ">UCLA (University California Los Angeles)</span></a><span class="apple-converted-space" style="text-align: left; "><span style="color: rgb(34, 34, 34); "><span style="text-align: -webkit-auto; "> </span></span><span style="color: rgb(34, 34, 34); ">by my surgeon, Dr. Hilal Laks who did a wonderful job. However, during my second surgery I had a few complications: like my heart was sticking to the sack that holds it in place so it doesnt hit the ribs, and that was bloody. Then a few days before I was supposed to be released my white blood cell count flew through the roof. I then somehow had gotten an infection and my left lung filled with fluid and collapsed. The Drs drained it and I was released November 25, 2005. a.k.a Thanksgiving Day.</span></span></div></span></span><span class="apple-converted-space"><div style="text-align: center;"><br /></div> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">I am currently doing great health and spirits.<span class="apple-converted-space"> </span></div></span> <div style="text-align: center;"><span style="background-color: rgba(255, 255, 255, 0.917969); ">I have just married my soulmate on July 10, 2010 and living life one step at a time.</span><span class="apple-converted-space" style="background-color: rgba(255, 255, 255, 0.917969); "> </span></div> <div style="text-align: center;"><span style="background-color: rgba(255, 255, 255, 0.917969); ">I found my heart as a blessing, and it has taught me compassion, love, and wisdom.</span></div><div style="text-align: center;"><span style="background-color: rgba(255, 255, 255, 0.917969); "><br /></span></div></span></span><p></p></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8jCEh6fQVrH53Dm5wDyDP-mWB87D3jzXtEhM8sJRhW_bULOE0g0UGzn7cX3haYxiajTUXFpQkY6f9mALS8gxpbp0lhrXtPp7snRnzFvbN9Tx-CDTOZfqofUtcnBo3OuDr6eYrVU28LSg/s1600/Yasmin1.jpg" style="font-style: normal; font-weight: normal; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 170px; height: 219px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8jCEh6fQVrH53Dm5wDyDP-mWB87D3jzXtEhM8sJRhW_bULOE0g0UGzn7cX3haYxiajTUXFpQkY6f9mALS8gxpbp0lhrXtPp7snRnzFvbN9Tx-CDTOZfqofUtcnBo3OuDr6eYrVU28LSg/s320/Yasmin1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708731179804488594" /></a><br /><div style="font-style: normal; font-weight: normal; text-align: center; "><br /></div><div style="font-style: normal; font-weight: normal; text-align: center; "><i><b><span><br /></span></b></i></div><div style="font-style: normal; font-weight: normal; text-align: center; "><i><b><span><br /></span></b></i></div><div style="font-style: normal; font-weight: normal; text-align: center; "><i><b><span>Julie's Story:</span></b></i></div><div style="font-style: normal; font-weight: normal; text-align: center; "><p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span>My name is Julie Ann and I am 29 years old. I am a daughter, sister, and a friend. I graduated from high school in 2001 and in 2003 I completed and received my degree in dental assisting. In 2005 I completed and received two Associate Degrees and most recently, December 2011, I graduated and received my Bachelors Degree in Psychology. I currently work <span style="line-height: 150%; text-indent: 0.5in; ">as a dental assistant at</span><span style="line-height: 150%; text-indent: 0.5in; "> my dad’s dental practice and I am also a part-time nanny for a single parent family. I enjoy sleeping as well as reading great books, doing outside activities, a good workou</span><span style="line-height: 150%; text-indent: 0.5in; ">t at the gym, being in the mountains hiking and camping. I also enjoy quality time with my family and friends.</span></span></p> <p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span>I am also a warrior and a survivor. I was born with a congenital heart defect, which was diagnosed at three months of age, and have had three open-heart surgeries with numerous other minor surgical procedures within the years. I was born with a single ventricle, HRHS (hypoplastic right he<span style="line-height: 150%; text-indent: 0.5in; ">art syndrome), which means that I am missing my right ventricle</span><span style="line-height: 150%; text-indent: 0.5in; "> or that it was underdeveloped, and numerous other anomalies. My second open-heart surgery was when I was three years old and my last, and hope to be final, open-heart surgery was when I was eight years old.</span></span></p> <p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span>My entire family all played their roles in helping me get my strength back after each of my surgeries. My parents raised me to be the active young child not afraid of anything in life. Sure they had their doubts on whether or not I can physically do something, but they always allowed me to try a<span style="line-height: 150%; text-indent: 0.5in; ">nd most times they watched me succeed. I succeed in many things and even have done more than anyone had e</span><span style="line-height: 150%; text-indent: 0.5in; ">ver imagined I could do. Through all my struggles I gained fear of needles and endless visits to the doctor. As the years went by my parents and doctors taught me about my health. I now understand why I was constantly tired, screaming and crying when I was just at the normal routine checkup visit with the cardiologist. Today, I embrace them knowing that I am still alive considering what I have b</span><span style="line-height: 150%; text-indent: 0.5in; ">een through and blessed with.</span></span></p></div><div style="font-style: normal; font-weight: normal; text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaGLsExkju5nkGEAZ9jGaO3UWXYkva2jDmozhe3XpkqfzHgaPFlAguasqVNh-nAjubSibrK73cZqI3HBwUdMj6M0nVrdhA2DFUmf4ZU_vOFR7Uku3bCUdHkZqOBi4WER-OU9BRCn-1UKg/s320/IMG00091-20110504-2121.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708730574877811218" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 150%; text-indent: 0.5in; "><span>Being a Psychology major I had to study about health, depression, labels, as well as many other psychology topics. I have never been too open about my health up until recently. My family and extended family always loved me and supported me when I dealt with medical issues. My friends at school always have known about my scar and knew something was wrong with my heart but they don’t know the extent of my condition. Opening up has always been hard on me emotionally and physically. I was afraid by opening up that I was just putting a label on myself, which I did not want. I had the option of receiving special education services all throughout my schooling but my parents always had denied it. In elementary and middle school I had tutors but they were outside of the school so my peers never knew about my additional help.</span></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "> <p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span>Throughout the years I opened up about my health so I can share my story for another family going through the same thing. I love going into the cardiologists office and giving all the other parents hope for their children. My parents never had much hope for me and never knew about the future of my health. Today, technology has advanced and there is that hope for babies born with a heart condition. When a stranger asks me about my scar on my chest I set my fear aside and embrace it and share my story. I don’t like to say I’m a survivor but I am. This condition doesn’t heal by itself and doesn’t go away over night, it stays with me every day and I have learned to embrace it. I believe that we are all given a hand of cards when we are born. I believe I was given the dealt of cards I was given to show strength, courage, and hope for my family as well as others. Going through medical procedures is hard emotionally and physically but I am strong not only for myself but for my family as well. My family also has their way of dealing with my medical condition, whether is to show me that I am a strong person and they are there supporting me and helping me through all the obstacles. </span></p> <p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span>Since I found out about my late uncle’s health I have always believed that I am living life for him as well as myself. My late uncle was diagnosed with Teteralogy of Fallot at a young age and he lost his battle at only six years of age. His diagnoses and death affected my father and his family and they continue to keep his memory alive. When I was born, I was told that we looked similar and that my diagnoses could be similar to his. My dad did not remember what his brother’s symptoms were, but since he has some medical knowledge he knew that something was just not right with my health. Also having an older sister five years of age, at the time of my birth, my parents realized that something was wrong since my older s<span style="line-height: 150%; text-indent: 0.5in; ">ister did not show any symptoms, at my age, that I was showing then.</span></span></p><p class="MsoNormal" style="text-indent:.5in;line-height:150%"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPKf4rrjsrMPn4SZWul85XbN6XWL1SLLm2ACQgUyFs9NLogT4hw0qLyRgI-8VRaZXO6wU_zps8v4ZkFQW2zw2XGzGAXCTbgCwvuYkTs2S3FqGZDgTrUjy4HZwmNaNPSV7iCMk46kEQrV0/s320/retouched_second_pic.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708730676112689426" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 256px; height: 320px; " /></p><p class="MsoNormal" style="text-indent: 0.5in; line-height: 24px; "><span>My story doesn’t end he<span style="line-height: 150%; text-indent: 0.5in; ">re. </span><span style="line-height: 150%; text-indent: 0.5in; ">My st</span><span style="line-height: 150%; text-indent: 0.5in; ">ory conti</span><span style="line-height: 150%; text-indent: 0.5in; ">nues each day and at </span><span style="line-height: 150%; text-indent: 0.5in; ">beach doctors visits. There is a greater hope of survival into my late adulthood since technology is rapidly advancing. There is even hope of one day achieving my dream of becoming a mother naturally. Throughout all the years I have been able to reflect on my life, my struggles, and my health. One thing that will never change is that I am human and have feelings. I am thankful for each day that I am given to be sharing with my family and friends. I always say I may have half a heart, but my heart is full of love for life. I am thankful for all opportunities to be able to share my story and struggles with. ~Julie</span></span></p><p class="MsoNormal" style="text-indent: 0.5in; line-height: 24px; "><span style="line-height: 115%; ">Julie's E-mail: Jewles702@gmail.com</span></p><div><br /></div><div><br /></div></div><div style="font-style: normal; font-weight: normal; "><br /></div><div style="font-style: normal; font-weight: normal; text-align: center; "><i style="font-family: Georgia, serif; font-size: 100%; "><b>Alexia's Story:</b></i></div><div style="font-style: normal; font-weight: normal; "><p class="MsoNormal" style="text-align: center;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size:12.0pt;line-height:115%">I was born December 29<sup>th</sup>,1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn’t until I </span><span style="font-size: 12pt; line-height: 115%; text-align: center; ">was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD’s and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done. I was hospitalized for a month after that. At six months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.</span></p></div><div style="font-style: normal; font-weight: normal; "><div></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 231px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXRRxQ8AbpUGotd44nzABtmQbhS1SsYL1faYmpHvplFH2cWXqNWsfpCTmbsKLw7qJm6WNlObYk0FsC-SlJKQgvJJbGMMUhvZpiBOmE6sSsE0Dy16OcShAf7le709I7A_xhR9bHJd7UWUE/s320/birth.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708729020237859010" /></div><div><div style="text-align: center;"><span style="font-size: 12pt; line-height: 115%; ">When I was eighteen months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 ½ drive to San Francisco every six months.</span></div><div style="text-align: center;"> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">So by the age of 2 I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in our family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask most of the questions when the three of us went to the appointments.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA with my grandmother’s husband and my uncle.I had a cath done to check the pressures and so that the surgeon who would be operating on me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%"> So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In Early August we went back down to UCLA where Dr. Laks told us that he thought I would be a perfect candidate for the experimental surgery he wanted to do. Apparently I was his ginuea pig.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.<o:p></o:p></span></p><p class="MsoNormal"></p><p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">The kitten was a gift from my grandmother’s husband after my surgery at 4 ½.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">When I was six, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">When I was eight years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a moth. </span></p><p></p></div></div><div></div><span><span style="font-size: 16px; margin-right: auto; margin-left: auto; "></span></span><span><span style="font-size: 100%; margin-right: auto; margin-left: auto;"></span></span><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ8SI44P6MzwthOEich_VA4EHeMhBpQmsROIpKlcvR1ZxmcJpHg8a8-pWeZZRw1bsslcujFYTznCz-s3xzUr84B1xFZxePlaFhgwFJW5GLgV_HbE1CuK6UGBCKUOC63t8r7TC6YjzvjNA/s320/Molly.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708729129005203026" style="font-family: Georgia, serif; font-size: 16px; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 247px; height: 320px; " /></div><div style="font-style: normal; font-weight: normal; "><div style="text-align: center;"><span style="font-size: 12pt; line-height: 115%; ">Also this time my mother attempted to admit me to the hospital. My mother took me to the registration desk at the hospital and told the lady behind the desk that she (my mother) was admitting me. At this time my cardiologist, Dr.</span><span style="font-size: 12pt; line-height: 115%; "> </span><span style="font-size: 12pt; line-height: 115%; ">Juris happened to walk by. He asked my mother what she was doing and my mother told him that she was admitting me. He told her that she cannot admit her own child. He listened to my lungs and my heart right there in the middle of the hospital lobby. He told my mother that I had pneumonia and that he would call in some meds for me.</span></div><div style="text-align: center;"> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">About six months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I needed an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn’t breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then lean over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">It wasn’t until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said “What if it’s my heart?” My grandmother immediately said “It’s not your heart” On February 5<sup>th</sup>, I proved I was right.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">I was drinking fries and a chocolate milkshake when I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I needed an Aortic valve replacement on that day or I was going to die.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">That afternoon I was rolled into the OR. 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">I continued to have problems. My sats were so unstable that I couldn’t be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don’t think green grapes had ever tasted that good. <o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother’s tutoring I was not held back.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">When I was sixteen I began dating an old friend of mine. It was a whirlwind romance and he proposed after 2 months together. A week after he proposed, I called it off knowing that I was no where near ready for marriage. We dated for a little bit after that but then we called it quits. We still remain good friends to this day.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years. However I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good. <o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">June 13<sup>th</sup>,2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. The only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.<o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">They attempted a Cardiac MRI during the month of June as well but I freaked out. They had had to adjust the leads on my chest several times and then push me in and out of that tiny tube multiple times. I informed the techs that I was going to throw up. They got me out of there and then I sat up and the room seemed to swim. I was a hysterical mess. I was crying and begging them not to make me go back in that tube. Even after a Valium I flat out refused to go back in. The next day I had a Cardiac CT and the only issue there was the techs wouldn’t listen to me when I told them where to put the IV in for the contrast dye to be administered. This resulted in nearly 30 minutes of sticking me. Finally the radiologist himself had to stick me himself and he got me on the first try. <o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:12.0pt;line-height:115%">Monday July 11<sup>th</sup>,2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn’t get moving until 8:00am. I don’t remember rolling down the hallway to the OR at all. The next thing I remember it’s Wednesday and they are pulling chest tubes. I didn’t get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just </span><span style="font-size: 12pt; line-height: 115%; ">8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me sever</span><span style="font-size: 12pt; line-height: 115%; ">al months to get my energy back but I finally got it and I felt better </span><span style="font-size: 12pt; line-height: 115%; ">than I had in a long time.</span></p><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha35vCqLiRxCyoCnw509MhKtx0XggmSD3t-LIgdOdm4wPw3uEtjFJds7eNqompACMeyjMWtTK3zXs8Y2qCxG4B0yj8yScOn3inc1ALf9SaRn7sH-KP2TR44i4udoRJx777pZJ3gVv0KBU/s320/TAHOE.bmp" border="0" alt="" id="BLOGGER_PHOTO_ID_5708729201880647202" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /><p class="MsoNormal"><span style="font-size: 16px; line-height: 18px; ">It took me a long time to figure out what I want to do with my life but just recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child’s life and in the lives of their families.</span> </p></div><div style="text-align: center;"><br /></div></div><div style="text-align: center; "><b><i><br /></i></b></div><div style="text-align: center; "><b><i>**NEVER loose HOPE!!</i></b></div><div style="text-align: center; "><b><i><br /></i></b></div><div style="text-align: center; "><b><i>1 in 100 are born with a </i></b></div><div style="text-align: center; "><b><i>Congenital Heart Defect!!</i></b></div><div style="text-align: center; "><b><i>Be Aware!!**</i></b></div><div style="font-style: normal; font-weight: normal; "><span style="font-size: 16px; line-height: 18px; text-align: center; "><br /></span></div><div style="font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 18px;"><br /></span></div><div style="text-align: left;font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><span style="font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family: verdana; "><div style="text-align: center;"> ~~ <a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a> ~~</div></span></div></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-58474101757452448672012-02-13T01:20:00.001-08:002012-02-13T12:38:59.085-08:00Connected By Heart ~ Day 5 ~ In the Family<div style="font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-family: Georgia, serif; text-align: center; "><i><b><span ><span style="line-height: 17px; ">Connected By Heart</span></span></b></i></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><i><b><span ><span style="line-height: 17px; "><br /></span></span></b></i></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">Sometimes Congenital Heart Defects effect more </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">than </span></span><span style="line-height: 17px; font-family: georgia; ">one person in a family...</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">That 1 in 100 happens more than once... without the 100.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">Most CHDs have NO known cause...</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">AND MOST of the time they are NOT Genetic...</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">BUT once there is one CHDer in the family,</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">the chances of another CHDer is higher...</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">usually higher to have either sibling CHDers</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">or a CHD Adult having a CHD child.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">Here are Litter Brother, Big Sister CHD stories...</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">2 amazing children... one now in heave, the </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">other on earth who have inspired and </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">forever impacted their family.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">First, here is beautiful and emotional</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">song I dedicate to siblings... the ones who</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">have one in heaven...</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">This song is a sister, sharing her love</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">for her heavenly brothers, who when I earth</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; ">were her angels in waiting:</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; text-align: center; "><span ><span style="line-height: 17px; "><br /></span></span></div><div style="text-align: center; "><span style="font-size: 15px; line-height: 17px;"><iframe width="560" height="315" src="http://www.youtube.com/embed/E8k5WiHvpoM" frameborder="0" allowfullscreen=""></iframe></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><i><b><span ><span style="font-size: 15px; line-height: 17px; "><br /></span></span></b></i></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><i><b><span ><span style="font-size: 15px; line-height: 17px; "><br /></span></span></b></i></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><i><b><span ><span style="font-size: 15px; line-height: 17px; ">Austin's Story: </span><span style="font-size: 15px; line-height: 17px; ">(Little Brother)</span></span></b></i></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><span style="font-size:11.0pt;line-height:115%; font-family:"Calibri","sans-serif";mso-ascii-theme-font:minor-latin;mso-fareast-font-family: Calibri;mso-fareast-theme-font:minor-latin;mso-hansi-theme-font:minor-latin; mso-bidi-font-family:"Times New Roman";mso-bidi-theme-font:minor-bidi; mso-ansi-language:EN-US;mso-fareast-language:EN-US;mso-bidi-language:AR-SA"><br /></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><span style="font-size: 11pt; line-height: 115%; "><span >With the birth of our son Austin came a world wind of emotions. We knew even though we were putting an end to the complicated pregnancy, that his birth would bring so many more challenges. At 22 wks. pregnant my husband and I went in for a routine ultrasound and came out not knowing the road ahead may bring. After two more ultrasounds our worst fears were confirmed… our precious unborn son’s heart did not develop right. We met with Dr. Kanakaria who bless his heart kept telling us that we did not do anything to cause this, he promised us that when Austin was born he would make sure he got the best of care. It did not keep us from wondering what we did, and making us feel like our world was being taken from us. In utero he was diagnosis with Common Atrium, Single Ventricle, Pulmonary Stenosis, and possible Heterotaxy Syndrome, and asplenia, and until he was born they would not be able to draw any further conclusions. On July 3, 2005 Austin Skylar Gregory was welcomed to this world. As soon as he was born I got to hold my precious son in my arms, and within a matter of seconds he was whisked away from my arms and taken down to NICU. I did not want to let him go, but made sure my husband followed him and watched him closely. Not long after his birth he was vented, but seemed to remain stable. As the days went on we thought he was progressing well and soon would be on his way home. Then we got the call…and when we thought the ride was coming to an end, we QUICKLY realized it was just getting started. One minute we were told that our son would be coming home in a few days, and the next Dr. K decided that Austin was going to need to get the BT Shunt placed in after all. Three days later he was in surgery. Dr. Bailey said the surgery worked great and said that he should be home by that weekend, but that night he had a few setbacks. My husband, Suzy, and I watched as the doctors calming starting bagging our son. In a matter of days he turned for the best…the ride was looking good. Once again we prepared to bring our precious angel home. The day we were getting ready to bring him home, he starting having complications with his breathing and heart. Dr. K and Dr. Bailey decided to do an catherization... We were told that the procedure should only take an hour, well an hour turned into a few hours. All of a sudden we got the call to meet the doctor on the heart floor. We were told that Austin would need emergency open-heart surgery. The BT Shunt was clotted. The doctors gave him little chance for survival. They did not foresee him making it out alive. All we could do was cry and hold each other hoping for the best. My husband and I got to spend about an hour with our son before going into surgery. He lay there hooked up to machines, he looked so peaceful, but yet his heart was still broken. Would he ever be whole again?? Me and Mitch got to go down with him to the OR, when the time came to leave him there not only were we but the nurses eyes were filled with tears, we all feared the worst. The Surgery was a SUCCESS; it did not take long at all. Dr. Bailey and his team did a great job. Austin once again proved just how strong he was. He was a fighter And like papa called him he was a TIGER. </span></span></div><div style="font-variant: normal; font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><span style="font-size: 11pt; line-height: 115%; "><span ><br /></span></span></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEGhV3Vf9P0xYAUi4qjIFYPo8ZVVK5ZsaFne60fx0tAHOhDLf72NrxPRDYy9bzh_AvzZxGC5Hm89tQOmy8gt1ypiQ05pczLlSGcQhBFTWYw3BveTGTwBJIGL82O77GQUn0rtKOSK-KuRI/s1600/Picture+065.jpg" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEGhV3Vf9P0xYAUi4qjIFYPo8ZVVK5ZsaFne60fx0tAHOhDLf72NrxPRDYy9bzh_AvzZxGC5Hm89tQOmy8gt1ypiQ05pczLlSGcQhBFTWYw3BveTGTwBJIGL82O77GQUn0rtKOSK-KuRI/s320/Picture+065.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708547959732746514" /></a><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span ><u><br /></u></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 115%; "><span >They had to leave his chest open, because of the swelling. They decided not to put any more pressure on his chest. He was in critical condition but he was doing well. We had spent the next day by bedside watching our angel, and within ten minutes of leaving his side he started to have a heart attack. Luckily Dr. Bailey was at his bedside and literally used his fingers to pump Austin’s heart. Austin’s body functions started to fail at time but the doctors always seemed to make everything work again. He then got NEC and his abdomen soon became swollen, after about a week he fought it off with the help of strong medication. He was looking good again. I finally got to hold him, but it was not for long he seemed to not be doing well off the ventilator, so they had to re-intubate him. Then his central line got infected and when they pulled it our blood clots released into his body. Austin did not let them get him down; he fought and kept fighting harder than ever. It was so hard to just sit there and watch our son go through all of this knowing there was nothing we could do to make things better for him. Why couldn’t it have been us? We would have done anything to take his place. A week later, Austin suffered from a neurological stroke. He was down for some time. Dr.’s feared the worst. What kind of damage happed to him during that down time?? They thought he may have lost his vision. After that he just laid there helpless. They were no longer able to take blood from the line, and he was getting bedsores. The NEC came back. Things were not looking good. We had to start deciding how far we were going to push our son. The doctors wanted to place a broviac in but the day they planned to do it, they soon realized his veins and arteries in his upper body were no longer any good. They were thinking about placing it in his upper thigh. They sent in someone to let us know what the changes would be. My husband asked her what the chances that this will work are and what are his chances of survival. She looked at us with tears in her eyes and said it would only give him a few more days of life, that they knew he would not live to see his first birthday. We were so overcome with emotions; all we could do was lay our heads by our sons and cry. After some more tests were taking they realized that his body had been full of at least 35 blood clots and inside the clots were sepial fungus. They said they could get rid of the fungus, but they would have to get rid of the clots first, and that could take months to do. Austin did not have months. He was swollen from head to stomach, and sometimes you could see blood at the edge of his eyes. He was not looking good, and you can see he was getting tired. He no longer held our fingers like he once did, and he just lay there lifeless, even though he had been off the drugs for a while. He would not wake up. </span></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span ><u><br /></u></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gKK4pyjT7o66SxbatDzMEUgyUm4a7KE251thJbF4oCPy7nvNmVu1hsR8oRLlD1Gb-cIxeNztUWLUPDAuw6Lb0911ytg5xDv9DztRXnE6-7RUOSkpp0KHFeyb1fv2xJtADOXtHHBXuIw/s320/austin2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708547850982398226" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 214px; " /><span style="text-align: left; font-size: 11pt; line-height: 17px; font-family: Calibri, sans-serif; "></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 115%; "><span >Then the news came that his head was swelling. Apparently he had a blo</span></span><span style="line-height: 115%; "><span >od clot on the base of his brain blocking the blood from leaving his brain. They wanted to put drains in his </span></span><span style="line-height: 115%; font-family: georgia; ">head to take care of the blood problem. But they said there is a good chance that he would die in OR. They said a healthy child does not have a good chance of survival, so his were really not good. When we looked at our precious son we knew he was tired and it was time to just let him rest. I couldn’t put him through any more pain. My husband and I struggled on what was the best decision for him. After a lot of tears we decided to place him on comfort care, it was the hardest decision a parent would ever have to make, but we had to do what was best for him and not us. We left the vent on and continued his medication, but did not allow any more intervention. If he started to pass they were to call us. Four days later, on August 29, 2005 we received a phone call that it is time and for us to get there quick. We lived about 45minutes away so we called his godmother Suzy and asked her if she would go sit with him. We wanted someone that loved him as much as we did there with him if he passed away before we got there. When we got there we were a companied by his godfather Scott, godmother Suzy, and Janet a family friend. My husband and I went up to his room. We got him dressed in his coming home outfit, and as sad as it was he was going home just not with us. We talked to him and </span><span style="line-height: 115%; font-family: georgia; ">told him that we loved him so much, and we would really miss him. That he will always be in our heart and we would be okay. Then we had them take everything off of him. We did not want him to pass hooked up to wires and machines. My husband Mitch made sure they gave him plenty of drugs so he would not feel pain. And then we took turns rocking him. It was only the fourth time I held him and my husband’s 3rd. Mitch knew how important it was for me to be the one who held him as he passed. I was to first to hold him when he came into this world and I was going to hold him as left. It took him 15minutes and I fetl that he was in no pain. He gasped for a breath three times and on the third one he passed away. He looked so peaceful, like a little angel. My husband rocked him, and then I got my first and last dance with him. It felt like he was in heaven dancing with me. After Scott, Suzy, Janet, Joey (Mitch’s brother) and Mitch’s dad came in and held him too. W</span><span style="line-height: 115%; font-family: georgia; ">hen the time came to take him down Joey wanted to go with him, and it made my husband and I realize we could not let him go alone. So with a lot of persuading they let me sit in a wheel chair and carry him down. We took him into the morgue and gave him kisses and told him that someday we will all be together again. He service was beautiful; Mitch and I dressed him, did his hair, and arranged all of his tigers around his casket. It was our way of showing him to all those who never got to see him. His life was never easy but he was a strong fighter. We were not only proud, but also blessed to be his parents. Looking back on the experience it was a long roller coaster ride, but well worth it. We promised ourselves that as long he got one breath of life then we did him right, we did not let them talk us into aborting him when we were pregnant, because we knew he was special and deserved a chance. Austin was too precious to live on this earth. God had something else planned for him. He is now our angel. We knew that it was his time; we had to let him go to heaven so he co</span><span style="line-height: 115%; font-family: georgia; ">uld be hole again. We did not do it for ourselves. This was all about his quality of life. My husband and I may now live with a broken heart, but our son’s heart is whole again, and that’s what matters. We will never be the same people again, but we learned that family is what matter and nothing else. Austin will forever be remembered. He had such a huge impact on people’s lives. We thank you Austin forever thing you taught us, you are truly a miracle, and a beautiful angel. We know you are up there in heaven watching out for all the other heart babies. WE LOVE YOU!!!!</span></div><div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 115%; "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 115%; "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: Calibri, sans-serif; font-size: 11pt; line-height: 115%; "><br /></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 115%; "><o:p><b><i><span >Makayla's Story: </span></i></b></o:p></span><b style="font-family: georgia; line-height: 115%; "><i>(Big Sister)</i></b></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "> <p class="MsoNormal"><span style="line-height: 115%; "><span >After what seemed to be a normal pregnancy I gave birth on April 8, 2002 to a beautiful seemingly healthy baby girl. It would only be after five years that we would fully understand the situations that led up to the day that changed our lives forever. It all began when Makayla was two weeks old and hospitalized for at the time we were told a simple viral infection. She was admitted for about three weeks of blood draws and spinal taps. Once again at three months old she started displaying signs that something was wrong and was admitted into the hospital. This time only staying for two weeks, we left with the same diagnoses of a viral infection. At 6months and 9 months she was readmitted for the same thing, each time we never got any answers other than they could not figure out what was causing her so many problems. This was sadly becoming the pattern of our lives and right after her first birthday we were back in the hospital demanding answering and feeling helpless that we could not fix whatever was wrong with our precious daughter. We watched time and time again these doctors poking her with needles. Throughout the first year she developed according but just seemed to have a week immune system and suddenly our hospitalizations stopped. All of the doctors chalked it up as her body getting stronger but I always feared there was something else going on. After that last hospital stay Makayla went on to develop into an intellectual little girl, with a love for learning and life. <span ><o:p></o:p></span></span></span></p> <span style="line-height: 115%; "><span >Suddenly when she was three years old our words were turned upside down. We discovered that her little brother would be born with sever Multiple congenital Heart Defects. Makayla loved visiting her brother at the hospital and would sit and read him stories she memorized. After numerous procedures and open heart surgeries he passed away at fifty six days old. As heart breaking as this was we would later discover he was a blessing in disguise. </span></span></div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="line-height: 115%; "><span ><br /></span></span></div><div><span style="font-size: 100%; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gKK4pyjT7o66SxbatDzMEUgyUm4a7KE251thJbF4oCPy7nvNmVu1hsR8oRLlD1Gb-cIxeNztUWLUPDAuw6Lb0911ytg5xDv9DztRXnE6-7RUOSkpp0KHFeyb1fv2xJtADOXtHHBXuIw/s1600/austin2.jpg"></a></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6gKK4pyjT7o66SxbatDzMEUgyUm4a7KE251thJbF4oCPy7nvNmVu1hsR8oRLlD1Gb-cIxeNztUWLUPDAuw6Lb0911ytg5xDv9DztRXnE6-7RUOSkpp0KHFeyb1fv2xJtADOXtHHBXuIw/s1600/austin2.jpg" style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7eY8OhxLwekk86XEXldCU9SfIjndZMwdX63RUT3w0EG_-N7d5oL-c63o9iy36ffCPU_Ri3oykYKNo0J_LXTvglzc6966DtwP2ag7HEix50ajQRIEWP8TN-LFQenMhfFjIQ-AbjG5fIVg/s320/Picture+090.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708548072027242562" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></a><div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; "><div style="text-align: center;"><span style="font-family: georgia; line-height: 115%; ">Then two years later everything started making sense. I can remember my daughters Kindergarten physical like it was just yesterday. It started like any other doctor visit, but quickly turned into a mother’s worst nightmare. Her doctor was listening to her heart and it seemed like it was forever when she turned to me and said “I didn’t know your daughter had a heart problem too.” Those words hit me like a ton of bricks and I froze, no words would come out of my mouth. I remember just wanting to grab my daughter and run far away from that place. When I looked at Makayla her eyes were filled with tears and she asked me, “Mommy am I going to die too.” You could see the fear in her eyes a</span><span style="font-family: georgia; line-height: 115%; ">nd the innocence in her heart. We sat quietly in the office while appointments were made to see a Cardiologist. From that point on everything seemed to happen so fast, it was like we were outsiders looking in. But for the first time in five years all of her past hospitalizations finally made sense, if the doctors would have taken the time to check her heart this could have all been fixed while she was a baby and not a little girl scared for her life. We spent the next few days preparing her for Cardiologist appointments and comforting her. The day came to meet the cardiologist and they gave us a diagnosis of a Large ASD. They were astonished that it was never found before then, because it was very obvious. They said that the right side of her heart was so enlarged it was working at the pace of a 35 year</span></div><p class="MsoNormal" style="text-align: center;"><span style="line-height: 115%; "><span >s old smoking man’s heart. They weren’t even sure how she was functioning from day to day life and were surprised she hadn’t gone into cardiac heart failure yet. When we met with Dr. Bailey he said the whole was too large and lop sided too be fixed through a catherization and would need open heart surgery. Dr. Bailey had a way to him that made us all feel at peace, he was also our son Austin’s surgeon and we trusted him. When the day came for her surgery I remember Makayla looked at me and her dad with such strength in her eyes. She told us “Mommy and Daddy don’t worry God and Austin is with me, God will make sure I’m okay.” At that moment she seemed wise beyond her years and was wheeled away from us. The hours she spent in surgery seemed to be the longest hours of my life, pacing and wondering if she was okay. When we call the call from the OR that she was okay we rushed up to recovery in tim</span></span></p><p class="MsoNormal" style="text-align: center;"><span style="line-height: 115%; "><span >e to see her coming down the hall. It was amazing how beautiful and full of color she looked. At that moment I realized that in the last five years she has never had so much color to her skin. She always looked pale, greyish and her eyes looked sunk in. God gave us or baby girl back! When she finally woke up her first words were “I told you I would be okay, now can I go home?” You could see the pain in her eyes but she hid it with a smile on her face. As soon as Dr. Bailey came in the room she asked him the same thing, and he said you have to walk first. So she said fine lets walk! A few hours after surgery she walked the halls slowly and crying in pain but she was determined to go home. Dr. Bailey told her she was a strong little girl and who was wise beyond her years. The next morning she was discharged from the hospital and recovered quickly. Makayla even got to start Kindergarten with all her friends.<o:p></o:p></span></span></p><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvV2GE3gfzIw1St6yWyD54VrtO3ZJzcqhidRNb9D6_w-gqYuqxHWnnrrcg2x2PmmR8uHS62amRCDf9YhGAQTp9oTepuuW8mq3nK-yUwTumsej34CxtxxZHzRCmUx6TOkeF_i4G6lgyo-o/s320/08-07-07_1806.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708547718222014034" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></div><div><div style="font-size: 100%; font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-size: 16px; font-family: georgia; line-height: 18px; ">Since her heart surgery she has had tubes placed in her ears, adenoidectomy, and tonsillectomy. Two years ago when she was seven they discovered that she has tricuspid valve regurgitation, mitral valve regurgitation and slightly enlarged right side</span><span style="font-size: 16px; font-family: georgia; line-height: 18px; "> </span><span style="font-size: 12pt; line-height: 115%; "><span >of her heart. Makayla has decided to let God be in control of her life and always tells people God is watching out for her. When the time comes to get those valves replaced she said God will get her through it. Since her surgery Makayla has decided she wants to go to school to be like Doctor Bailey. She wants to save th</span></span><span style="font-family: georgia; font-size: 12pt; line-height: 115%; ">e lives of babies and kids, just like he saved hers and tried to save her brothers. When people tell her she doesn’t look sick, she always tells them it’s because you can’t see my heart. At nine years old Makayla has had to learn her limits and pay attention to her heart. She refuses to let her CHD control her life but knows she has certain limits. She loves her zipper (surgery scar) because it reminds her of what she went through and that she is part of a special group of kids who were handpicked by God. Not once has Makayla asked “why me”, but always says “God has a plan for all his children.” My daughter is my hero; her faith has taught me so much in life. </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><span style="font-variant: normal; line-height: normal; "><div style="text-align: center; "><b><i><span >**CHD Awareness Week 2012...</span></i></b></div><div style="text-align: center; "><b><i><span >Be Aware!**</span></i></b></div><div style="font-size: 100%; font-family: verdana; font-style: normal; font-weight: normal; text-align: center; "><br /></div><div style="font-size: 100%; font-family: verdana; font-style: normal; font-weight: normal; text-align: center; ">~~ <a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a> ~~</div></span></div></div></div></div></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-37141167339763051242012-02-12T23:53:00.000-08:002012-02-13T02:31:06.837-08:00Connected By Heart ~ Day 6<div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><div style="text-align: left; "><div style="text-align: center;"><b style="font-family: Georgia, serif; "><i>Connected By Heart</i></b></div></div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; "><br /></div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">Congenital Heart Defects effect 1 in 100...</div><div style="font-size: 16px; font-family: Georgia, serif; "><br /></div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">To me that means 1 in 100 is a superhero miracle (I guess </div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">since I'm a CHDer, I'm included in that)</div><div><br /></div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">Superheroes come in all shapes and sizes...</div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; "><br /></div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">It sure is not easy being a CHDer... but somehow our </div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; ">superhero powers always shine through.</div><div style="text-align: center;font-size: 16px; font-family: Georgia, serif; "><br /></div><div style="text-align: center; "><span><iframe width="420" height="315" src="http://www.youtube.com/embed/GRz4FY0ZcwI" frameborder="0" allowfullscreen=""></iframe></span></div></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; font-size: 12pt; "><b><i><br /></i></b></span></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; font-size: 12pt; "><b><i><br /></i></b></span></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><b style="font-size: 12pt; font-family: georgia; "><i>Christopher's Story:</i></b></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; font-size: 12pt; "><br /></span></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span><span style="font-size: 12pt; ">I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and I was told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, </span><span style="font-size: 12pt; text-align: left; ">something that can be grown into, </span><span style="font-size: 12pt; text-align: left; ">or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk. Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like ?(non-compacted)?. When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff.</span></span></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div> <span style="font-family: Georgia, serif; font-style: normal; font-weight: normal; "><div style="text-align: center; ">We took him home at 45 days of age and he was admitted into hospice the next day. The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. </div></span><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; "><span><span style="margin-right: auto; margin-left: auto;"><img style="text-align: center;display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2TUaB-LvJPsqNNUXiOMcCtZiCB5YRNVFw8AoDAq60m1LLEgFvB6FC7OPaoNSLSBe5j2AiQdqdQ2VeroG32oICbQ_-R59KCGotaP5eldL1HB4K1wCccsTMdALBqtdDWnCEn38HOXpTyU8/s320/yyyyyyyyy.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708541618318906818" /></span></span><div style="text-align: center; "><span><span style="font-size: 12pt; ">God is the only reason I made it through that period of time, an</span><span style="font-size: 12pt; ">d I never let go of my faith that God would make my baby whole and it was a win win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know </span><span style="font-size: 12pt; ">his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay. </span></span></div></div><div style="font-family: Georgia, serif; font-style: normal; font-weight: normal; "><div style="text-align: center; "><span><span style="font-size: 12pt; "><span><br />Some people called it denial, some people called it an amazing a</span></span><span style="font-size: 12pt; ">ct of faith - I tend to agree with the latter. </span></span></div><div style="text-align: center; "><span><span style="font-size: 12pt; "><span><br />I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We </span></span><span style="font-size: 12pt; "><span>had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and </span></span><span style="font-size: 12pt; "><span>when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at </span></span><span style="font-size: 12pt; "><span>his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good consc</span></span><span style="font-size: 12pt; ">ience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.</span></span></div><div style="text-align: center; "><span style="font-size: 12pt; "><br /></span></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdkitTKnguc3fec8L_BVZxOgz1BgZa5WW49EDkNp80JsVsh_3u08zN6ffNRHBw8TxDTxFAyPkf5YaMWzeNRHJTdo-54EzgJ06Vta8qD5Inz5K4cVZkkRg0bfxjtBxSsCXiDUn59lYckTg/s320/h.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708542493800117618" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 240px; height: 320px; " /></div><div style="font-style: normal; font-weight: normal; "><div style="font-family: Georgia, serif; text-align: center; "><span style="font-size: 12pt; "><span><br /></span></span></div><div style="font-family: Georgia, serif; text-align: center; "><span><span style="font-size: 12pt; "><span>In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy. Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, less than 200 known cases worldwide. So much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.<br /><br />He is now 3 years and 8 months old, his 4th birthday is rapidly approaching and I am basking in every minute with him. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today.</span></span><span style="font-size: 12pt; "> </span></span></div><div style="font-family: Georgia, serif; text-align: center; "><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="font-size: 10pt; color: rgb(34, 34, 34); "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo4qG0c3FR3_4U2tNB6n0FTZPzXzfjDToHUTTuk9i7kSxXtlYK7_ls-Dqb7p03QO0rFkFy2EfHP2VGKW_bP-UbqxM4Aa32ZqUF70v0eJGyZ4G_PCW6UEWU5xy7Hd6sfHlO7KBanSiwnDE/s320/smile.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708541760119414626" style="color: rgb(0, 0, 0); font-family: 'Times New Roman'; font-size: medium; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 242px; " /></span></p><div style="font-family: Georgia, serif; "><p class="MsoNormal"><span><span style="color: rgb(0, 0, 0); font-size: 16px; ">God is still in the miracle business. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book. I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD awareness</span><span>.</span></span></p> <p class="MsoNormal" style="color: rgb(34, 34, 34); font-size: 10pt; "><span><span style="font-size: 12pt; "><span>You can read more about Barth syndrome at: </span></span><a href="http://www.barthsyndromefoundation.org/" target="_blank" style="font-size: 12pt; "><span style="color:#1155CC">http://www.barthsyndromefoundation.org/</span></a></span></p><p class="MsoNormal" style="font-size: 10pt; "><span style="font-size: 12pt; "><span> And you can follow updates on Christopher here: </span><a href="http://www.caringbridge.org/visit/cj08/mystory" target="_blank" style="color: rgb(34, 34, 34); "><span style="color: rgb(17, 85, 204); ">http://www.caringbridge.org/visit/cj08/mystory</span></a></span></p></div><p class="MsoNormal" style="font-family: Georgia, serif; "></p><div style="text-align: left; font-size: 16px; font-family: Georgia, serif; "><br /></div><p style="font-family: Georgia, serif; "></p><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><b><i>Natalie's Story:</i></b></span></p><p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); ">Carrying Natalie, before being born, was awesome. Even the nausea, compared to her big brother, was mild. She went easy on me while I was pregnant with her. Everything was uneventful and normal. During the course of my pregnancy, I decided to switch my ob/gyn around 20 weeks along which probably ended up being the beginning of a big mistake. Seriously soon-to-be mamas: don't switch if you don't have to. Lesson #1. The only reason I switched was to deliver at a hospital that was supposed to be "top notch" (it ended up being just as good as the hospital where my son was born). As opposed to my old OB, I had no idea but my new ob/gyn was totally against using ultrasounds hardly at all since my firstborn was born healthy and full term. I had to pretty much beg for an ultrasound since I hadn't had one yet, so at 26 weeks I finally found out that Natalie was a "she". During the scan, the tech noticed that Natalie was very wiggly and the shots of her heart were not clear at all. She told me to tell my doctor, so she can send me for another scan another day. Totally cool. When I followed up at my checkup with the ob/gyn I asked her "so I hear the scans weren't clear enough at the ultrasound" and she states that everything was perfectly fine. </span><span><o:p></o:p></span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); ">Now I know to never even take a doctor's word as the final word when I feel uncomfortable. But at the time, I just let it slide, even though I felt frustrated, but I just</span><span style="color: rgb(34, 34, 34); "> </span><i><span style="color: rgb(34, 34, 34); ">knew</span></i><span style="color: rgb(34, 34, 34); "> </span><span style="color: rgb(34, 34, 34); ">that everything was probably..well..fine with Natalie. <o:p></o:p></span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">The pregnancy went to full term and I had to evict Natalie by scheduled induction on April 21st, 2007- the same day as her daddy's birthday. </span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">The labor was fast and furious and she was born 3 1/2 -4 hours after labor was induced. She was also born with a clean bill of health and nice and pink. Apgar scores both 9, we were so ecstatic. Every thought about our unclear sonogram photos went totally out the window. The nurses and doctors all heard Natalie's murmur pretty soon after the birth, but we were told not to really worry because it's so common to be born with a murmur that closes up quickly. Right before our 24 hour discharge from the hospital, the nurse who checked Natalie out said the murmur was gone and we were given the discharge papers. Home here we come!</span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">We got home and right that evening, my mom in law noticed how purple Natalie's feet were. I was so deliriously tired that I shrugged it off as nothing serious, that "well, she has really fair skin like her daddy". We never noticed much of the "purple spells" again so our overly exhausted brains didn't think much of it. We followed up with our regular pediatrician for the usual few day old checkup and sure enough, our doctor heard the heart murmur loud and clear. Our doctor couldn't believe no one caught it before we left for home a few days ago. The murmur never went away. Getting a bit concerned, our doctor gives us a referral to go and see a heart specialist at Johns Hopkins Children's Center. Within about 2 weeks later, we were in the pediatric cardiologist's office. Natalie's oxygen saturation was 90%, but her weight and color were normal. At the time, I didn't know much of the pulse ox numbers, but now I know why they rushed to get her into the room to have her heart scanned. They knew something wasn't right- 90% is not normal.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">While scanning her heart during the echocardiogram, the doctor walks in about 20 minutes into the test and heavily stares at the screen for a moment, then sits down next to the tech and says "hmm..Natalie you're even trickier than I thought". He went from kind of concerned to really concerned. I'm sure my heart rate went up, but I did what I could to keep Natalie comfortable. She laid there like a champ. The echo had to be at least an hour. <o:p></o:p></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">A little bit after getting settled into the exam room, the cardiologist walks in, really stern face, sits down with me and tells me how sick Natalie is. He explains all of these medical terms..but my ears aren't letting much of it in... neither were my eyes because the tears kept me from seeing his diagrams.. finally the tears fell so I could see the diagram he took some time to draw: something to show me exactly how Natalie's heart looked. He explained how she wasn't born with a right ventricle, that it wasn't functioning at all. That she has a VSD and an ASD but those 2 defects typically came with the defect of Tricuspid Atresia and that her ASD (Atrial Septal Defect) was actually helping to keep her alive. It was so much to take in. I was so scared to hear more, but I knew I had to hear him talk, but I wanted him to stop talking. He let me cry and even left the room for a little bit to let me cry it out. Poor James and my mom in law were sitting in the room, too. I was holding Natalie and giving her a bottle and just was in such denial that she was sick. I kept repeating that she didn't look sick- even her fingers and feet looked nice and pink. </span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">From the time that Natalie was diagnosed to the time that she had her 1st of a few surgeries, the doctors at Hopkins and our pediatrician all kept a really (really) close eye on Natalie. We went in for daily weigh-ins a few days a week. We spent almost everyday at a doctor's office. My husband and I studied the anatomy of the heart and I tried my best to figure out exactly how a Tricuspid Atresia defect functioned. As a new "heart mom" I wanted to be the expert at everything- all the way from diagrams down to exactly what to expect when she's an adult. I was terrified of having more horrible surprises. I guess that was part of my grieving process- grieving the loss of a perfectly healthy baby girl. </span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">Even with Natalie's cyanotic spells (now we knew why she turned so purple the day we brought her home and there was even a term for it!), Natalie managed to still gain enough weight to keep everyone happy. She was a little skinny and slept a lot, but she was getting closer and closer to the bi-directional Glenn operation, and getting more past the need for a BT Shunt. The focus was keeping Natalie stable and if she could skip the typical first surgery, we were told her outcome was even better. Her oxygen numbers were always in the high 80s or low 90s and with each point she went down, her age went higher. A few months before her surgery we "beefed" Natalie up with concentrated formula and she went from slim to super chunky. They wanted a chunky baby and they got one! With heart babies, the extra weight is actually great for them, during the surgery and for recovery. She had her very first heart catheterization, to help prepare the Hopkins team, about a week before Natalie's scheduled heart surgery. Right after they finished, the cath doctor tells us "well..we can't wait longer than a week for this surgery, she needs it no later, her heart is showing signs of declining. Please make sure the date does not change." My husband's jaw dropped. I remember how gray Natalie's skin was those few weeks before surgery. It was a good 50% of the time where she looked really sick. Her pulse ox dropped into the lower 80s. It was time.<o:p></o:p></span></p><p class="MsoNormal"></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span>On Monday, October 1st, 2007 Natalie had her very first open heart surgery: the Glenn Shunt. This surgery helps to prepare her blood flow to skip past the malformed right ventricle. The goal is to eventually have enough blood flow to the lungs without having to use that side, but use the left ventricle 100%. </span><span><o:p></o:p></span></span></p><p></p></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOjKiQC88-CHGcSX_1-Bw6DHqpQ03lz5t3JbZGp24CGE3mZOzR8jIbmqfYpOu2njzyT_7gJNSv5QsBMp73XkPuziMgO06Ujk7oUm5tCdH5V1ZrrmQWUrwfHrQcOJUGJH5e6mHbeC8AegI/s1600/34588_1503637800451_1519428543_31271070_2669766_n.jpg" style="font-family: Georgia, serif; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOjKiQC88-CHGcSX_1-Bw6DHqpQ03lz5t3JbZGp24CGE3mZOzR8jIbmqfYpOu2njzyT_7gJNSv5QsBMp73XkPuziMgO06Ujk7oUm5tCdH5V1ZrrmQWUrwfHrQcOJUGJH5e6mHbeC8AegI/s320/34588_1503637800451_1519428543_31271070_2669766_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708538716439666178" /></a><div style="font-family: Georgia, serif; text-align: center; "><p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">It was a textbook case to the Hopkins medical team. But it was a miracle to us. I remember the advanced students (they called them "fellows") who visited the PICU would visit each patient 2 times a day to check their progress and document everything. They would always visit Natalie last because they used her as the example of a great outcome. They would always smile at me and there was never any shortage of compassion. Here, my 5 month old daughter lay there with tubes and wires coming from every direction, but she was kicking ass and they reminded me of that. I kept holding onto that. And with each day, more and more wires and tubes came out. Freedom!<o:p></o:p></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">By Friday, October 5th, 2007 Natalie left for home! Her surgery went perfect and her body responded perfectly to the surgery. She was sore, but the incision (scaring the crap out of me, I can't lie) was the only most difficult part of the physical care. I was so scared to do something wrong. And hearing Natalie cry from the pain... no mom or dad wants to see their baby in real, uncomfortable pain like that. But within a week of being home, Natalie was showing tons of signs that she was handling it more easily and she was feeling more comfortable. </span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">From the time we brought her home until 2009, we just enjoyed her. She was able to do physical therapy and finally started walking around 22 months. Her energy, everyone could tell, was pretty good! At one point during Natalie's recovery, her cardiologist said "Natalie's body was made for this" (meaning, her heart defect). </span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">In April of 2009 Natalie turned 2, we moved to Colorado from Maryland, but Hopkins gave us the all clear that she should be able to handle higher altitude. We were told that she probably wouldn't need her 2nd open heart surgery- The Fontan completion, until around the age of 4 or 5. We had more time to just enjoy Natalie.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">The move went well, we quickly found a new pediatrician to help us keep an eye on Natalie's health, but during the summertime we noticed that Natalie wanted to rest more and her purple spells were more furious and happening more frequently. She still played and was active, but you could tell there was a drop. She would want to sit and lay around more often than play. We were finally able to get squeezed in to visit our new cardiac doctor at The Children's Hospital of Denver in mid-September for a sedated echocardiogram. That's when they threw a huge curve ball at us- the decided that Natalie was ready for the completion of her heart surgery and they wanted to operate ASAP. We were stunned. We thought we had a few more years!</span></p></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOjKiQC88-CHGcSX_1-Bw6DHqpQ03lz5t3JbZGp24CGE3mZOzR8jIbmqfYpOu2njzyT_7gJNSv5QsBMp73XkPuziMgO06Ujk7oUm5tCdH5V1ZrrmQWUrwfHrQcOJUGJH5e6mHbeC8AegI/s1600/34588_1503637800451_1519428543_31271070_2669766_n.jpg" style="font-family: Georgia, serif; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnRA4NtB2NM-VKTY-DXAug6Cz5MBbgq47n3y1Kr-Z7vf03YARizkMOItcuv6Vr7Xahu3hEiFfvzuriT9FHwFC4lurJgHLILQZc-HBzTi8Gapbe_Q7ACHqXCmrKAYj3cl6R63ycaykA3eo/s320/Screen+shot+2012-01-16+at+11.16.01+AM.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5708538831176607730" /></a><div><div style="font-family: Georgia, serif; text-align: center; "><span style="color: rgb(34, 34, 34); font-size: 10pt; "><br /></span></div><div style="font-family: Georgia, serif; text-align: center; "><span style="color: rgb(34, 34, 34); ">We had a heart catheterization scheduled for October 8th, 2009. This was a way to prepare the heart team at Children's: to really get a closer look at her heart and past surgery. </span></div><div><div style="font-family: Georgia, serif; text-align: center; "> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">We had another curve ball- the heart team found 3 collateral veins that had to be closed off right away. These veins grew at some point over the year or so to overcompensate for the insufficient blood flow. But instead of helping Natalie they decreased her blood flow, which is why she was getting so tired all of the time. After a night stay in the hospital, Natalie recovered well enough to go home and rest. About a week later, Natalie's energy was THROUGH THE ROOF. She was like a totally different kid. She was jumping and running and being a crazy 2 year old. Her collateral veins were closed off with platinum so there's always a running joke now how expensive Natalie's insides are. The only thing missing now are diamonds, which if Natalie could have demanded diamonds she would have.</span></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">On the early morning hours of Tuesday, January 12th, 2010, we brought Natalie back to Children's for her Fontan operation. We were so very lucky to enjoy her through Halloween, Thanksgiving, Hanukkah, New Years, but now it was time to get back down to business. </span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">Her body was ready for this operation even if us parents were not. Other than some extra "oozing" as the surgical team calls it, Natalie's transfer from off of the heart/lung bypass machine was a success. The operation took a whole lot longer than her first surgery, but this was it. This surgery was to "finish off" what her heart and lungs needed. <o:p></o:p></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">We had some little scares during the days in the CICU but nothing that hindered her ability to recover. At one point her kidneys were a bit "freaked out" with the amount of fluid and blood pumping in her body right after surgery, but her body worked it out. There was also a scare with her blood pressure dipping way low at times, particularly for the 2nd night, but just like her kidneys, her body worked that out, too. <o:p></o:p></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">By Monday night, January 18th we were all HOME. She did need continuous oxygen for a while, but we were prepared. <o:p></o:p></span></p> <p class="MsoNormal"><span><span style="color: rgb(34, 34, 34); "><o:p><span> </span></o:p></span><span style="color: rgb(34, 34, 34); ">Natalie recovered beautifully. It was, once again, a text book case. We were all so thrilled. Within about a week of coming home, it was so hard to get Natalie to take it easy. Her energy level was pretty great and it became tricky to keep her from hitting her incision. But her incision healed beautifully. There were even moments we were given the green light to let her have a break from the continuous O2. As you can imagine, that was like heaven to Natalie. </span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); ">We used the oxygen therapy until about April and we didn't look back (except for when she had a nasty case of RSV in 2011 when she needed it again for a like a week). </span></p> <span style="color: rgb(34, 34, 34); ">Since her surgery, Natalie has evolved into such a spunky, energetic, wild and crazy 4 (almost 5) year old. She asks about her scars once in a while and tells us that her tummy and chest scars are "cool". To date, Natalie has about 9 visible scars from her surgeries- her "zipper", chest tubes scars, wrist scars, and neck scars from various lines. But just like her scars, the memories that Natalie has about her surgery seem to slowly fade away. She has attended preschool, a dance class (and another one coming this summer), loves horses, has had a Make a Wish trip to Disney World, and visited a real beach for the first time recently. She loves the big waves of the ocean. She's the kid, out of the 2 we have, that we'll have to keep a close eye on, but not just because of a heart condition, but because Natalie is a true thrill seeker. </span></div><span style="font-family: Georgia, serif; "><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyAneODiwZem49YvSjqW1EyV9OK9kcqV0JT8-48Cc9kA1W0j8x0MDT0mzCzu7bLEciDTP34yJLxA2OPtWWVj8p3waa2-99r4rAsm9y4kn0bTma9PGUvrapUSAJoCrYM6AchmOPyt-Zes8/s1600/P6130014.JPG" style="font-family: Georgia, serif; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 205px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyAneODiwZem49YvSjqW1EyV9OK9kcqV0JT8-48Cc9kA1W0j8x0MDT0mzCzu7bLEciDTP34yJLxA2OPtWWVj8p3waa2-99r4rAsm9y4kn0bTma9PGUvrapUSAJoCrYM6AchmOPyt-Zes8/s320/P6130014.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708538634123713234" /></a><div style="font-family: Georgia, serif; text-align: center; "><span><br /></span></div><div style="font-family: Georgia, serif; text-align: center; "><span><span style="color: rgb(34, 34, 34); "><span>Watch out world! Here comes your present day Shirley Temple! : </span></span><span style="color: rgb(34, 34, 34); "><span>)</span></span></span></div><br /><div style="font-family: Georgia, serif; text-align: center; "><br /></div><div style="font-family: Georgia, serif; text-align: center; "><span><br /></span></div><div style="font-family: Georgia, serif; text-align: center; font-variant: normal; line-height: normal; font-size: 100%; "><b><i><span>Zander's Story:</span></i></b></div><div style="font-family: Georgia, serif; "><p class="MsoNormal" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><span style="color: rgb(34, 34, 34); ">Zander was born 31st July 2010 14 days over due. Normal pregnancy 4 scans and no </span><span style="color: rgb(34, 34, 34); ">signs of any problems. Zander was born naturally, weighing 10lb 3 3/4oz. But when Zander was just 9 hours old we were told Zander had a loud heart murmur and we was asked to stay overnight and a midwife check on zander hourly on his temperature and saturations and breathing I had at that point no idea what saturation moniter was.</span></span></p> <p class="MsoNormal" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><span style="color: rgb(34, 34, 34); ">That was a long and very stress full night the unknown was scary. The next morning we was seen at 9am, Zander went for a check with a dr who confirmed Zanders murmur was still there and loud and </span><span style="color: rgb(34, 34, 34); ">wasn't going to go away on its own.</span></span></p></div><div style="font-family: Georgia, serif; "><div style="text-align: center;"></div><div style="text-align: center;"><span style="color: rgb(34, 34, 34); ">He said because Zander was feeding well and sats were good we were allowed home but if Z had any blue/grey spells to contact hospital asap he explain what a blue spell was to us and said we would receive an appointment for a detailed heart scan within the next two weeks to see if the murmur had gone.</span></div> <p class="MsoNormal" style="text-align: center; "><span style="color: rgb(34, 34, 34); ">We put things to back of our mind a little as Z was eating well and doing well.</span></p><div style="text-align: center; "></div><div style="text-align: center;"><span><span style="color: rgb(34, 34, 34); ">We got an appointment for August 19th 2010 I took Zander and his heart healthy sist</span><span style="color: rgb(34, 34, 34); ">er, Avril to rotherham general hospital where he was born for his scan I was dreading it. Zander was so good laid w</span><span style="color: rgb(34, 34, 34); ">ell. I remember well Z let off the loudest trump and the ladies commented on it.</span></span></div> <p class="MsoNormal" style="text-align: center; "><span><span style="color: rgb(34, 34, 34); ">The scan seemed to take forever then we had to go to out patients and wait to </span><span style="color: rgb(34, 34, 34); ">be seen by a consultant. This took forever. Then I was called into a consultants’ room, I could tell by his face it wasn’t good news.</span></span></p> <p class="MsoNormal" style="text-align: center; "><span style="color: rgb(34, 34, 34); ">He drew me a picture of a heart & went on to say several things about Zanders and his</span></p><p class="MsoNormal" style="text-align: center; "><span><span style="color: rgb(34, 34, 34); "> problems. Then said he think he has something called TOF, tetralogy of fallots. But we had to be referred to </span><span style="color: rgb(34, 34, 34); ">leeds for a more in depth check with the specialists.</span></span></p></div><div style="font-family: Georgia, serif; "><span style="margin-right: auto; margin-left: auto; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf3deePvDOBij1hs0rS6jXPbooy7skfn0EUlUF5ooIMav99iSObLVhwXl3HlT-4ff0rt_3k67W-4nFH2FGfM1U3z-DCN2yNsAqKH5Uh9Ei0M4iJYLqBSlqw-auffncvBzQwMfCQ0gTSm0/s320/ummmm+879+%25281%2529.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708533874866931090" style="font-size: 16px; font-family: Georgia, serif; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 240px; height: 320px; " /></span></div><div style="font-family: Georgia, serif; "><span style="margin-right: auto; margin-left: auto; "><div style="text-align: center;"><br /></div></span></div><div style="text-align: center; font-family: Georgia, serif; "><div style="text-align: center;"><span>While he tried to contact Leeds, I rang Dan (at the time </span></div><div style="text-align: center;"><span>my partner) & explained </span><span style="color: rgb(34, 34, 34); font-size: 100%; ">what </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">I </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">could to him from what </span></div><div style="text-align: center;"><span style="font-size: 100%; color: rgb(34, 34, 34); ">has sunk in </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">from the consultant. </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">Dan was trying to </span></div><div style="text-align: center;"><span style="font-size: 100%; color: rgb(34, 34, 34); ">arrange </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">a </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">lift </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">to the hospital to be </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">with us. The </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">consultant </span></div><div style="text-align: center;"><span style="font-size: 100%; color: rgb(34, 34, 34); ">managed </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">to </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">contact Leeds </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">and </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">said we would </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">be </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">called </span></div><div style="text-align: center;"><span style="font-size: 100%; color: rgb(34, 34, 34); ">with </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">an </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">appointment. They </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">rang </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">the next day, </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">at 12pm </span></div><div style="text-align: center;"><span style="font-size: 100%; color: rgb(34, 34, 34); ">and </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">I had to </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">get </span><span style="font-size: 100%; ">us a taxi </span><span style="font-size: 100%; ">to Leeds for 2pm </span><span style="font-size: 100%; ">as all the </span></div><div style="text-align: center;"><span style="font-size: 100%; ">family was </span><span style="font-size: 100%; ">working.</span></div><div style="text-align: center;"><span><br /></span></div><div style="text-align: center;"><span>The scan seemed even longer than the previous day. </span></div><div style="text-align: center;"><span>Zander's consultant Dr. </span><span style="font-size: 100%; ">John </span><span style="font-size: 100%; ">Gibbs an amazing Dr., </span></div><div style="text-align: center;"><span style="font-size: 100%; ">confirmed </span><span style="font-size: 100%; ">Zander had </span><span style="font-size: 100%; ">ToF with a large VSD </span><span style="font-size: 100%; ">and </span></div><div style="text-align: center;"><span style="font-size: 100%; ">Pulmonary </span><span style="font-size: 100%; ">Branch Stenosis. What the </span><span style="font-size: 100%; ">heck was this </span><span style="font-size: 100%; ">I </span></div><div style="text-align: center;"><span style="font-size: 100%; ">thought?!!? He went on </span><span style="font-size: 100%; ">to</span><span style="font-size: 100%; ">say that </span><span style="font-size: 100%; ">if Zander behaved and </span></div><div style="text-align: center;"><span style="font-size: 100%; ">stay well he </span><span style="font-size: 100%; ">would </span><span style="font-size: 100%; ">need open heart </span><span style="font-size: 100%; ">surgery </span><span style="font-size: 100%; ">before his </span><span style="font-size: 100%; ">1st </span></div><div style="text-align: center;"><span style="font-size: 100%; ">birthday. What? </span><span style="font-size: 100%; ">Why </span><span style="font-size: 100%; ">would my tiny </span><span style="font-size: 100%; ">baby </span><span style="font-size: 100%; ">need open </span></div><div style="text-align: center;"><span style="font-size: 100%; ">heart surgery?! </span><span style="font-size: 100%; ">Please </span><span style="font-size: 100%; ">tell me why?! Some </span><span style="font-size: 100%; ">bits went over </span></div><div style="text-align: center;"><span style="font-size: 100%; ">my </span><span style="font-size: 100%; ">head, </span><span style="font-size: 100%; ">feeling like </span><span style="font-size: 100%; ">my world was </span><span style="font-size: 100%; ">crumbling.</span></div></div><div><div style="font-family: Georgia, serif; text-align: center; "> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">We was aloud home the same day, he gave us a booklet on TOF that I have read over and over since that day.</span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">For the first 5 months Zander did really well he thrived and apart from regular heart checks, appointments a sedated echo he was doing well. He was our page boy in Oct 2010 he looked fabulous. But he started to get blue tints to his hands lips and feet. By ec time he was completely off his bottles and food. and from D</span><span style="font-size: 100%; color: rgb(34, 34, 34); ">ec-April that was a downward spiral with no one listening to me. During this time Zander started having TET Spells. the first was in Feb 2011. it was awful one minute he was eating the next he was screaming then white and floppy, while I was on the phone to the ambulance he came round. His sats were low and we were admitted to RGH over n</span><span style="font-size: 100%; color: rgb(34, 34, 34); ">ight the next day Zander was put on beta blockers propananol (spelt wrong sorry), </span><span style="font-size: 100%; color: rgb(34, 34, 34); ">3 times a day to try and keep spells at bay.</span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">Feb 14th Zander had a heart cath at leeds done by dr john gibbs as they needed more details for Zanders surgeon. </span><span style="color: rgb(34, 34, 34); ">He had more spells another bad one in April 2011. Another admission to hospital his sa</span><span style="color: rgb(34, 34, 34); ">ts were low 70s late 60s.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">At this time we were finally referred to a dietician. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">We came home the same night. Zander from December he had become more blue an</span><span style="color: rgb(34, 34, 34); ">d more and more breathless. In April we met Zanders surgeon Mr Kevin Watterson (God).</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">He explained Zanders heart was a very tricky condition and would be a long and very risky surgery, he said it would be sometime in the next six month his surgery. Oh my 6 months that see</span><span style="color: rgb(34, 34, 34); ">med a lifetime away.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">But at Zanders regular cardio app in May Dr brown Zanders cardiologist decided it was time to push Zanders surgery forward hi sats were dropping he was so tired. She said she talk to his surgeon. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">Dr brown rang a week later saying Zander had pre op appointment for the following week. Oh wow so soon. We went May 31st nd Zander had lots of tests and we met his anithn</span><span style="color: rgb(34, 34, 34); ">atists, </span><span style="color: rgb(34, 34, 34); ">bloods done ecg etc.</span></span></p><div style="font-family: Georgia, serif; text-align: left; "><div style="text-align: center; "></div></div><p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">We was told surgery would be within two weeks dr brown rang me that Thursday to tell me Zander should have had surgery that day but had to be cancelled. We was rung weds 8th June dinner time by Zanders surgeons secretary Zander was due for Surgery Friday 10th we had to go for admission by 2pm the next day. Was awful mixed feelings at home, what ifs etc. Also Avril not knowing what was happening she </span><span style="color: rgb(34, 34, 34); ">was only just 3.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">Was hard leaving her with family. We got there for 2pm, was given a room, and we</span><span style="color: rgb(34, 34, 34); "> waited for Z's endless tests for checking he was well enough for the next day.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">We went in playroom, tried to keep as normal as possible Mr. Watterson came with consent forms and went over surgery plans again as said it could be 8 hours even longer. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">The rest of the night me & Daniel played hangman tried to keep upbeat. I was awake by 6.30 just watching Zander sleep. Was so hard knowing what was happening that day. It was dark in the room, I was so scared so damn scared. I just prayed my boy would be brought back to me. They brought a gown for Zander ab</span><span style="color: rgb(34, 34, 34); ">out 8am, we took the long (well not so long but very scary walk to the theatre and they</span><span style="color: rgb(34, 34, 34); "> gave Zander his mask to send him to sleep was awful to watch saying goodbye was hardest hated leaving that room, was harder watching him go to sleep this time than when he had his cath done :'(..)</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">We went back to ward 10 we had been offered parents accommodation in the old nurses building so we moved our stuff over there. We walked into leeds centre in a daze. We went to the pub longest pint ever had. We sat with our phones close by at all times. We decided to go to the cinema knowing that it would be several more hours until Z was out of surgery and we had our phones on our knee the whole time. We went to see Hangover 2 but I have to say I spent more time looking at my phone than the film, we went back to parents accom and waited and waited, when it was around 8 hours we went back to ward 10 and waited in the parents room, </span><span style="color: rgb(34, 34, 34); ">it then got to 9 hours than 10 hours than 11 hours we was stressing th</span><span style="color: rgb(34, 34, 34); ">inking the worst.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">It was almost 12 hours I went to the nurses’ station they said Zander was just being taken to CICU by the time we got took to ICU it was gone 10pm and Mr Watterson wanted to see us first he said surgery had been more complicated than expected and Zander was a very tough case. He had also found Z had several more layers of narrowing in his branched arteries and it was very severe. He patched up what he could get too and closed the hole. But he still had narrowing between heart & lungs and hoped they grew in time. He went on to say it was up to Zander next and the next 12 hours were critical and he still might not make the night. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); ">We finally got to see Zander almost 15 hours later he looked so puffy but So PINK! He looked amazing in color. But he struggled lots and those first 4 days were very up/down touch and go. He had b</span><span style="color: rgb(34, 34, 34); ">ad temperature problems, he was on dialysis, his heart rate was very low, he went into complete heart block, he had s</span><span style="color: rgb(34, 34, 34); ">hadows on his lungs, enlarged liver. By day 7 he had still not got his own heart rate/rhythm back. Mr Watterson had decided Zander was going to have a permanent pacermaker impla</span><span style="color: rgb(34, 34, 34); ">nted. A Pacemaker?!! He was 10 months old!!!</span></span></p><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPMSHbxymRup-JXI4P_AorRFVfkAzweeyQJCey3OWJw1kJiHBpM07N3xmiMbLfoLR6ftXUowlvDXAxiYfUvo_cfSPvE69hLlzdNiv8Lhp0PhOtB6L0u92TFeULZiKKwZ7XPlidvusDKNY/s320/june+008.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5708535039718200802" style="font-size: 16px; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 180px; " /></span></p><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">Mr. Watterson explained his surgery would last around 2 hours and they was slight risk of infection with the pm being a foreign body :(. </span></p><p class="MsoNormal" style="font-family: Georgia, serif; "> </p><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">I broke down near Zanders bed Adrien the nurse was amazing i had to know would his heart be stopped again and so much more. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">I rang Daniel that morning and explained everything he was already coming that day so was relieved.</span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">Daniel arrived early pm, we saw Zander for an hour. We had a call about 5pm Zander was going for surgery. We decided to go to pub and a wander, we was called at 7.30pm to let us know Zander was on the ward and surgery went well. They slowly started weaning him of the vent and other medicines. Though he started showing signs of infection and was blue tinted for first time since surgery :(. He was put on a course of antibiotics. Saturday 18th we saw him with his eyes open properly. It was beautiful, he moved beds and then by Monday he moved into a side room. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">Tuesday he was moved up into HDU ward 10, he ate his 1st food in 11 days by mouth too, and Avril was with me that day and me Avril & Zander had our first cuddles since surgery was amazing!!! Love that amazing lil dude and his big brave sister!! <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">Zander moved into his own room the next day he was getting stronger and stronger. He was allowed home Sunday 26th June 16 days post surgery. He came home with 2 lots of diuretics and some other medications. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">He went from strength to strength crawling shortly after his 1st Birthday, his 1st birthday </span><span style="color: rgb(34, 34, 34); ">was very emotional. </span><span style="color: rgb(34, 34, 34); ">And lots of people came. Thank you all. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">August he had a cardio app and was taken off his diuretics. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); ">Oct 2011 we had his 2nd pacemaker app with Dr. Blackburn. Dr. Blackburn found that since August Zanders inlet Valve had broken causing enlargement on the right side of his heart :'( meaning possible surgery sooner for valve replacement or repair. Oh Geeez what else did my poor lil mr has to go through?! He was put back on his Diuretics. <o:p></o:p></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">Dec we had his 3rd Pm appointment no change :'( scary to hear. Zander does get slightly breathless still and very very sweaty we are back in leeds Feb 14th I pray for improvement. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">Also have had endless other appointments and checkups scans/etc. Too many to mention all. </span></span></p> <p class="MsoNormal" style="font-family: Georgia, serif; "><span><span style="color: rgb(34, 34, 34); "><o:p> </o:p></span><span style="color: rgb(34, 34, 34); ">I just want to say above all this Zander is a very happy maybe tiny but amazing 17 month old who amazes me daily. I Hate to think of the future but enjoy life daily. </span></span></p><div style="font-family: Georgia, serif; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKjVuZ8TTKGuNnY2tVSTOHEN9FEgteIUru37UDXpMn6TZu3s-eKajvvbCMcxgy1I6Wea9EHtCjJvMfGX90AZ_7tePTW9t6QAawxqGwn8wLy1wDQJqYq6Mx8TXWL_CBF4jGm7ZxL-fWOZE/s320/Z.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5708535572923723026" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div><span><span style="color: rgb(34, 34, 34); "><span>Thank you for reading A Shortened version of Zanders life, so far his amazing journey.</span></span><span style="color: rgb(34, 34, 34); "> </span></span></div><p></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "> </span></p><p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span lang="FR"><span>Cassie Zanders Mummy! x x x</span><span style="font-size: 10pt; "><o:p></o:p></span></span></span></p><p class="MsoNormal" style="font-family: Georgia, serif; "><span style="color: rgb(34, 34, 34); "><span lang="FR"><span><br /></span></span></span></p><p style="font-family: Georgia, serif; "></p></div> <p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; "><span style="font-size:10.0pt;font-family:"Arial","sans-serif"; mso-fareast-font-family:"Times New Roman";color:#222222"><o:p> </o:p></span></p> <p class="MsoNormal" style="text-align: center; font-family: Georgia, serif; font-size: 100%; "><br /></p><p class="MsoNormal" style="text-align: center; font-size: 100%; "><b><i><span>**Remember: 1 in 100 are born with a CHD</span></i></b></p><p class="MsoNormal" style="text-align: center; font-size: 100%; "><b style="font-size: 100%; "><i><span>BE AWARE. EDUCATE. SPREAD AWARENESS!!**</span></i></b></p><p class="MsoNormal" style="text-align: center; font-family: Georgia, serif; font-size: 100%; "><span style="font-size: 100%; "><br /></span></p><p class="MsoNormal" style="text-align: center; font-family: Georgia, serif; font-size: 100%; "><span style="font-size: 100%; ">~~ </span><a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; font-family: verdana; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a><span style="font-size: 100%; "> ~~</span></p><p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; "><br /></p><div style="font-family: Georgia, serif; "></div><div style="font-family: Georgia, serif; text-align: center; "><span><br /></span></div><div style="font-family: Georgia, serif; "><div></div><div style="text-align: center;"><span><br /></span></div><div></div></div><div style="font-family: Georgia, serif; "><div style="text-align: center; "></div></div></div></div></div></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-77632946834834597022012-02-10T10:23:00.000-08:002012-02-10T13:51:41.956-08:00Connected By Heart ~ Day 3 ...Scary Reality<div style="font-style: normal; font-weight: normal; line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><i style="font-size: 100%; "><b><span>Connected By Heart</span></b></i><span style="font-size: 100%; ">...</span></div><div style="font-style: normal; font-weight: normal; "><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The Congenital Heart Defect communit<span style="font-size: 100%; ">y is always</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">there to support each other. They share </span>triumphs<span style="font-size: 100%; "> and </span></div><div style="line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><span><span style="font-size: 100%;">share hea</span></span><span style="font-size: 100%; font-family: Georgia, serif; ">rtache.</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">CHDs are the world's number ONE birth defect... </div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">And the world's number ONE birt<span style="font-size: 100%; ">h</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="font-size: 100%; ">def</span><span style="font-size: 100%; ">ect KILLER.</span></div><div style="line-height: normal; font-size: 100%; font-family: Georgia, serif; "><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><div style="font-family: 'Times New Roman'; font-size: medium; "></div><div><br /></div></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">- 1 in 10 CHDers will not be diagnosed till they hav<span style="font-size: 100%; ">e </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">already </span><span style="font-size: 100%; ">passed away!</span></div></div><div style="line-height: normal; font-size: 100%; font-family: Georgia, serif; "><div style="text-align: center;"><span><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">-4,000 CHDers in the U.S. will not live to see</div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "> their 1st <span style="font-size: 100%; ">birthday</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">-Thousands more will not make it to adulth<span style="font-size: 100%; ">ood</span></div><div style="font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; font-family: Georgia, serif; text-align: center; "><span style="font-size: 100%; ">and thousands </span><span style="font-size: 100%; ">more will die before the age of 40</span></div><div style="font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; font-family: Georgia, serif; text-align: center; "><span style="font-size: 100%; "><br /></span></div><div></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">This is a HARSH and SCARY reality for CHD parents, </div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Adults CHDers l<span style="font-size: 100%; ">ike myself, </span><span style="font-size: 100%; ">Spouses/partners of Adult </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">CHDe</span><span style="font-size: 100%; ">rs,</span><span style="font-size: 100%; ">CHDers fr</span><span style="font-size: 100%; ">iends </span><span style="font-size: 100%; ">and family. </span><span style="font-size: 100%; ">I KNOW something </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">could </span><span style="font-size: 100%; ">happen </span><span style="font-size: 100%; ">that is wh</span><span style="font-size: 100%; ">y </span><span style="font-size: 100%; ">I L</span><span style="font-size: 100%; ">IVE my </span><span style="font-size: 100%; ">life to the </span><span style="font-size: 100%; ">FULLEST </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">I </span><span style="font-size: 100%; ">possibly </span><span style="font-size: 100%; ">can!! I </span><span style="font-size: 100%; ">try to make </span><span style="font-size: 100%; ">no </span><span style="font-size: 100%; ">excuses why... </span><span style="font-size: 100%; ">I may </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">have </span><span style="font-size: 100%; ">"half a heart" </span><span style="font-size: 100%; ">(one </span><span style="font-size: 100%; ">of </span><span style="font-size: 100%; ">the </span><span style="font-size: 100%; ">severe CHDs), </span><span style="font-size: 100%; ">but </span><span style="font-size: 100%; ">I will </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">NOT let </span><span style="font-size: 100%; ">it stop me </span><span style="font-size: 100%; ">from LIVING... </span><span style="font-size: 100%; ">as </span><span style="font-size: 100%; ">what is </span><span style="font-size: 100%; ">the point of </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">all </span><span style="font-size: 100%; ">the </span><span style="font-size: 100%; ">HARD </span><span style="font-size: 100%; ">emotional and </span><span style="font-size: 100%; ">heart-aching</span><span style="font-size: 100%; "> journey </span><span style="font-size: 100%; ">my </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">pa</span><span style="font-size: 100%; ">rents </span><span style="font-size: 100%; ">went </span><span style="font-size: 100%; ">on </span><span style="font-size: 100%; ">for </span><span style="font-size: 100%; ">me </span><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">be here!!</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">I OWE it to everyone to LIVE... </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">and </span><span style="font-size: 100%; ">you </span><span style="font-size: 100%; ">know w</span><span style="font-size: 100%; ">hat?!?!...</span></div></div><div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">EVERYONE </span><span style="font-size: 100%; ">heart healthy or not should LIVE to the</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "> fullest... </span><span style="font-size: 100%; ">make every day</span><span style="font-size: 100%; ">, every moment COUNT!!</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "></div><div style="font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; font-family: Georgia, serif; "></div><div style="font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; font-family: Georgia, serif; text-align: center; "></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I have many personal heroes.... but on my list of heroes is </div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">ALL <span style="font-size: 100%; ">CHD Angels. </span><span style="font-size: 100%; ">The CHDers young and old who have </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">fought </span><span style="font-size: 100%; ">a long, ha</span><span style="font-size: 100%; ">rd, and brave fight; who </span><span style="font-size: 100%; ">are amazing </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">and inspiring... </span><span style="font-size: 100%; ">and who h</span><span style="font-size: 100%; ">ave left a legacy.</span></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; "><div style="text-align: center; "></div></div><div style="font-size: 100%; font-family: Georgia, serif; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">**Here is one song I love and I dedicate this song to all </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; ">CHD </span><span style="font-size: 100%; ">a</span><span style="font-size: 100%; ">ngels </span><span style="font-size: 100%; ">(young and old):</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="line-height: normal; font-size: 100%; font-family: Georgia, serif; text-align: center; "><span><iframe width="420" height="315" src="http://www.youtube.com/embed/iOufqWodFNo" frameborder="0" allowfullscreen=""></iframe></span></div><div style="font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; font-size: medium; font-family: 'Times New Roman'; "></div><div style="font-size: 100%; font-family: Georgia, serif; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; font-weight: normal; line-height: normal; "><i><br /></i></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; "><i>Here are just three <b>Hero</b> stories (get out some tissues)</i><span style="font-weight: normal; font-style: normal; ">... </span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Let's keep <span style="font-size: 100%; ">there memory alive </span><span style="font-size: 100%; ">and spread CHD Awareness:</span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span style="font-size: 100%; "><br /></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; "><span style="font-size: 100%; "><b><i><br /></i></b></span></div><div style="text-align: center; font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; "><span style="font-size: 100%; "><b><i><br /></i></b></span></div><div style="font-size: 100%; font-family: Georgia, serif; text-align: center; font-variant: normal; line-height: normal; "><span><b><i>Faith's Story:</i></b></span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-variant: normal; line-height: normal; "><span><br /></span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-variant: normal; line-height: normal; "><span><span><span>I am the luckiest Mom ever.</span><span> </span><span>Faith was and always will be the most amazing little girl that ever lived and my husband and I consider ourselves to be so blessed to have been her parents.</span><span> </span><span>Faith could light up a room with her smile and made it her personal mission to make everyone she came in contact with laugh.</span><span> </span><span>She was more compassionate and loving than any other two year old I’ve ever met and our lives are better for having known her.</span></span><span> </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-variant: normal; line-height: normal; "> <p class="MsoNormal"><span>My pregnancy started out blissfully normal. I had no morning sickness, gained very little weight, felt great. When we found out we were having a little girl in May of 2008, we were thrilled. When I went back to my doctor two weeks later, she said they were concerned the baby might have clubbed feet and to go see the high risk specialist but that it was no big deal. The high risk doctor was going to be on vacation for a couple weeks and , since we were told it was no big deal, we scheduled the appointment for about 4 weeks later when I was 26 weeks pregnant. We never, ever thought there would be something wrong with our little girl and saw it as another opportunity to get more pictures of our little princess.</span></p><p class="MsoNormal"></p><p class="MsoNormal"><span><span>On June 24, 2008 we went to the high risk specialist and our world turned upside down. The ultrasound took forever and then the doctor told us he thought the baby was missing part of her heart. He said in his career, he had only seen one other case like ours, of a woman who had been in a few weeks earlier. The doctor called a friend of his down at Columbia University Medical Center in New York City who set us up to come down the next day to be evaluated by another doctor. The drive to my parent</span><span>s’ house from the doctors was horrible. We couldn’t’ stop crying, couldn’t believe what was happening. Couldn’t believe that the baby that we wanted and loved so much had something so major wrong with her. Telling my family that day was one of the hardest parts of this journey since they too loved her and were so excited over another granddaughter, another niece. It was awful but we remained hopeful that maybe things were not so bad, maybe the doctor was wrong.</span></span></p> <p class="MsoNormal"><span><span>My parents went with us to Columbia the next day for the first of many appointments and tests. I kept hoping there was some misunderstanding but when we finally sat down with the doctor and she gave us the news….we were devastated. Our baby was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS affects 1 in 50 thousand babies and is the most severe Congenital Heart Defects (CHD). In HLHS, the left side of the heart is either severely underdeveloped or non-existent and is 100% fatal without intervention. In our case, one chambers was completely missing, the other was so tiny it was useless and there was significant narrowing in the veins. We were given three options: late term abortion (only done in 2 states after 24 weeks pregnant – not ever a real option for us); compassionate care (let the baby die of natural causes within the first week of life); or a series of three open heart surgeries designed to redirect the blood flow throughout the body. After having an amniocentis done to rule out any chromosomal deficiencies that would make the baby ineligible for the surgeries, we decided the only real option for us was the three part surgeries.</span></span></p> <p class="MsoNormal"><span>The day the baby’s heart condition was diagnosed; naming her became our top priority. All the names we had been considering just felt inadequate now. We wanted her to have a name with strength and power to it and decided on Faith Margaret. Faith to give her strength, Margaret after my mother, grandmother, and great-grandmother. It was the perfect name for our little warrior.</span></p> <p class="MsoNormal"><span>Knowing our daughter was going to have a bumpy road ahead of her changed the rest of my pregnancy. I was scared of everything. I would buy an outfit, then panic and not do anything for days after. I was so afraid we were going to lose our little girl before we even got to meet her. I couldn’t bring myself to set up a nursery but had a baby shower both before and after she was born (one before as proof of our belief our little girl was going to be ok, one after her first surgery as a celebration of how well she was doing). I would cry for no reason and wanted to keep her inside of me forever, where she was healthy and thriving. We had to move to New York City two weeks before Faith was scheduled to be induced to ensure that she would be born where we wanted her to be rather than the local hospital. Everything I had planned for went out the window when Faith’s heart was discovered.</span></p> <p class="MsoNormal"><span>I was admitted to the hospital on Sunday, September 28 and induced for delivery on Monday. Faith, however, had plans of her own and was ultimately born on Tuesday, September 30, 2008 by c-section. We didn’t get to hold her, though they did take pictures of her before whisking her away to the NICU to be hooked up to different machines. My husband got to see her that afternoon but they wouldn’t let me go to her until almost 12 hours later. By this point I was in full fledge panic and all I wanted was to see my little girl for the first time.</span></p><p></p></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih9DwW7oHPRBJd4pwQlZZ1250b_q3fx3Gw4STXp97MEOsGdM3n5lX7KAeMwkUvn7wOinvP7WrFPoJLLejMupmuQIA8SRQPlQcBoYvBdlHa18lVsBCwhM5pGjRmBN5nE6KOEB3eSxuTkQM/s320/F1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707603622218196530" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><p class="MsoNormal"><span>We didn’t get to hold Faith until she was three days old because of all the wires and things she was hooked up to but spent hours at her bedside, talking to her and touching her. She had her first surgery when she was 6 days old (the Norwood). This surgery put in a temporary shunt to hold open the PDA in her heart until she was big enough for the second surgery. The surgery went well but that night, fluid starting building up in her chest and Faith’s oxygen levels dropped causing her to crash and have her chest reopened. We rushed back to the hospital at 3 AM but by the time we got there, she was stable. Faith’s chest was open for the next couple days while her body adjusted. She finally was able to come home after three long weeks in the NICU, just in time for Halloween.</span></p> <p class="MsoNormal"><span>Faith thrived at home. She wouldn’t take a bottle and had to be tube fed but was such a happy little baby. She had her second open heart surgery on February 12, 2009 and had no major issues. The Glenn operation removes the shunt and redirects the blood flow in the top half of the body. We were home in 2 weeks and Faith bounced back immediately at home. She continued to thrive, meeting all milestones and making us happier than we have ever been.</span></p> <p class="MsoNormal"><span>On July 21, 2009, Faith went back to Columbia for a catheterization. Things did not go well. They found that her right pulmonary veins were very narrow and didn’t give us much hope. For the first time in her life, we had to face the very real possibility we would lose our little girl. The doctors were grim, giving her at best 50/50 odds of having the Fontan surgery but they really didn’t have a plan as to how to treat the veins other than to pray they grew. We were devastated but were not going to give up on the love of our lives.</span></p> <p class="MsoNormal"><span>With the help of our pediatrician and cardiologist, we found out Boston Children’s Hospital had an entire department devoted to kids like Faith. Armed with our parents, my husband and I took Faith up to Boston in December 2009 for a variety of tests. When we met with the doctor, she said Faith had Pulmonary Vein Stenosis. Pulmonary Vein Stenosis is an extremely rare condition with little research done on it. Cells grow within the vein and stop blood from being able to flow from the heart to the lungs. A lung scan showed that Faith was getting less than 1% blood flow to her right lung and there was a very real chance of her losing use of that lung. We were scared but the doctors were very confident that putting Faith on an experimental chemotherapy called Gleevac could stop the stenosis. Like cancer, cells were growing where they shouldn’t be and the Gleevac was targeted to destroy these unwanted cells. Faith had a cath done on December 21, 2009 to see if she’d be eligible for a surgery that would restore use of her right lung. We were the only people rooting for Christmas in the ICU because it would mean Faith would be eligible for surgery. The cath was a success and Faith had her third open heart surgery on December 23, 2009. This surgery was successful, we were thrilled! We spent a week and a half in the hospital after this surgery and took Faith home, armed with Gleevac and a plan. We were so confident this medicine was going to save our little girl.</span></p></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8OXUYDIw_FtpUQJuKrfGGfCGhGPfsM36fv_TFoRLs77BtyzOP220l_yU6s_ZNrvtRVadWUO368LOvme78oTCQBjldwmzNRnNg6AdiKBN-LS2BgoX0eAA7gpo8PbEaNWkAd2BxUFJFY60/s320/F2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707603785400424690" style="font-size: 16px; font-family: Georgia, serif; text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; "><p class="MsoNormal" style="text-align: center; "><span>2010 was a year filled with hospital visits for us. Once a month my mom and I would take Faith up to Boston for a sedated echo and lung scan and to evaluate the effectiveness of the Gleevac. Things were overall, positive. Faith was responding to the medicine and her stenosis was becoming manageable. She had two caths during the year, both of which were successful and Faith continued to amaze us in every way. She was such a talker! She had more words than any other two year old I’ve ever met and LOVED to snuggle. She was a late walker and always preferred to be carried but she could do it and would get this little devil grin each time she succeeded. </span></p> <p class="MsoNormal" style="text-align: center; "><span>After Halloween, things began to change. Faith began to retain fluid in her face and stomach. We asked all of her doctors about it but no one seemed concerned or have any thoughts on what was causing it. In early December 2010, her doctor decided another cath was in order to see if they could find out what was going on with the fluid. We scheduled the cath for January 3, 2011.</span></p> <p class="MsoNormal" style="text-align: center; "><span>On Saturday, December 18, Faith started randomly screaming and complaining her tummy hurt. Her stomach was very large and distended. She would wake up in the middle of the night screaming but I would go in and give her a drink and rub her tummy and she’d go back to sleep immediately. On Tuesday, both Faith and I were exhausted so I called the pediatrician, cardiologist, and GI doctors. Her pediatrician finally got back to me late that evening and suggested I take her to the Emergency Room at Yale-New Haven to rule out an intestinal blockage. After a few hours in the ER, we were discharged saying to give her Maalox. </span></p> <p class="MsoNormal" style="text-align: center; "><span>Wednesday, Faith was very sleepy but I thought it was just because she was so exhausted. No one had been getting much sleep so I thought it was just catching up with her. Her pediatrician called around 3 to see how things were going and I said they were the same, Faith was still screaming, still complaining. He suggested I bring her in to see him at 5:15. At 4:45, my mom and I got her ready to go. Faith was fine, she was talking, acting like a sleepier version of Faith but nothing major. </span></p> <p class="MsoNormal" style="text-align: center; "><span>Something happened on the ride over to the doctor’s office. I don’t know what. She was grunting in the car but I couldn’t see her because it was dark out. We got into the lobby and she didn’t look right. I was so scared. Her eyes were rolled back and she was nonresponsive to me. I thought she’d had a stroke and we quickly hurried upstairs to the office. When we got in the office, she seemed to snap out of it a bit and cried when I got her undressed, sat on the scale on her own. I started to think maybe I’d imagined it. The nurse left us and almost immediately Faith’s back gave out and she started turning blue. My mom ran and got the doctor and they came in and started working on her. I was holding her when all of a sudden she stopped breathing and I felt her little soul leave her body. They kicked me out of the room to work on her while they were waiting for the ambulance. I went to my mom but I knew in my heart she was gone. It is a feeling I can’t describe other than to say I literally felt her leave me, I knew she wasn’t coming back. We were rushed to the ER and they worked on her for over an hour before it was time to let her go. </span></p> <p class="MsoNormal" style="text-align: center; "><span>Our world has been turned upside down since December 22, 2010 when we lost our little princess. Nothing is the same without her here. We are so blessed to call ourselves Faith’s parents and consider ourselves lucky to have known and loved her. </span></p></div><div style="font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; font-family: Georgia, serif; font-size: 100%; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzv0Pf4LZuBUjUxiAozcyIPpKJlNPDLFS6saZcVE26Ei_Cg9hL3zwoOjqyxL1-ZpWCmNIFrac4SY4KiA_lRWp77O5s82MW2lHumTypdIebnQuUcanc2aGUgcwzbYYmV5AAKu3Y_Rt1S1o/s320/F3.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707603725578724834" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 213px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; "><p class="MsoNormal" style="text-align: center; "><span>Being on the CHD roller coaster has had its ups and downs but all in all, we are better people since she was here and we wouldn’t trade her for the world. We had our second child, a heart healthy baby girl on June 21, 2011. Hope Margaret looks just like her big sister and has so many of Faith’s personality traits. We always said that if she has half the personality and spunk of Faith, we will be twice blessed as the luckiest parents there ever were and so far, that’s proving true. </span></p> <p class="MsoNormal" style="text-align: center; "><span> Faithy truly loved the world and the world loved Faithy but we know she dances with the angels now and lives forever in our hearts.</span></p></div><div style="font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; font-family: Georgia, serif; font-size: 100%; "><br /></div><div style="font-variant: normal; line-height: normal; font-weight: normal; font-style: normal; font-family: Georgia, serif; font-size: 100%; text-align: center; "><span><br /></span></div><div style="font-variant: normal; font-weight: normal; font-style: normal; "><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; text-align: center; "><div style="text-align: left; "></div></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; text-align: center; "><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-variant: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><i><b><br /></b></i></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-variant: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><i><b>Corbin's Story:</b></i></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">At our routine 20 week ultrasound, the doctors </span><span style="line-height: 18px; ">found something wrong with our baby's heart.We</span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">were sent to a specialist for </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">fetal echocardiograms. </span></span><span style="line-height: 18px; ">During that visit, we learned that our baby boy had</span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">a Congenital Heart Defect (CHD), a fatal heart </span><span style="line-height: 18px; ">condition called Hypoplastic Left Heart Syndrome.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Basically, he had only half a heart. </span><span style="line-height: 18px; ">These were the options we faced: </span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">have a late-term abortion; offer </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">the </span></span><span style="line-height: 18px; ">baby only comfort and care after birth </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">and let </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">him pass away within hours;</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">place our </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">baby on a heart transplant</span></span></div><div align="left" style="background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">list and await a donor; or </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">find a </span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">hospital that </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">would perform </span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">experimental surgery to </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">try and </span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">save </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">his life.</span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">The last option meant immediate </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">heart to enable it to function with only </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">one </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ventricle. That surgery would be </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">the first in a series of three op</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">en heart </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">surgeries over a course of two years. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Needless to say, the </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><span>situation was overwhelming and the </span></span><span style="line-height: 18px; "><span>and the decision daunting.</span></span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><div style="text-align: center; line-height: normal; "><span style="line-height: 18px; "><span><br /></span></span></div></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><div></div><span style="line-height: 18px; text-align: -webkit-left; "></span></span></div><div align="left"><span class="size10 BookmanOldStyle10" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; min-height: 18px; "><div align="left" style="text-align: center; line-height: normal; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">We immediately knew we would try and save our son's precious, God-</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">given life and began immediately searching for a hospital. We chose the hospital at the University of Michigan and traveled to Ann Arbor to give birth to our son, whom we named Corbin. After much prayer, </span><span style="line-height: 18px; ">we chose the three-surgery option. Just three days old, Corbin had his first open heart surgery.</span></div><div align="left" style="text-align: center; line-height: normal; "><span style="line-height: 18px; "><br /></span></div><div align="left"><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><div align="left" style="line-height: normal; "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "></span></div><div style="line-height: normal; text-align: center; "><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">Corbin was released from the hospital several weeks later. What joy </span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">it gave us to bring home our little baby boy! But, as thrilling as it was, </span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">it was equally frightening. He was outfitted with a feeding tube that </span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">ran from his nose to his tu</span><span style="font-size: 100%; line-height: 18px; ">mmy. He needed to be fed every two hours. </span><span style="font-size: 100%; line-height: 18px; ">He also took five different medications for his heart.</span></div></span></div></span><div style="line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; "><div align="left" style="text-align: -webkit-left; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><div style="line-height: normal; text-align: center; "><div style="text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbBTW6tI8xe-uVuImNAKH5w9OqKyH0fll90n8zAA08vuTdCxWavjlD88zdIazCuZZUS1qdPnBdamUn8dSP2n2urnIoJkcE-VTcKNA6T_05oc8-hlMGAjmY7lmoTKe4UijzD3xJyEGNMIE/s320/1_birth__36_.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707584797640611650" style="font-size: 100%; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div></div></span></div></div><div style="line-height: normal; "><div style="text-align: center;"><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">We adjusted well and life was good, but then things went terribly wrong. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin was losing weight and was very blue. One evening </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">we rushed Corbin to the emergency room because he was not</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> responding. Once there, they rushed him into </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">the operating room to perform a h</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">eart catherization to take pictures o</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">f the inside of his heart. They found he was not getting enough oxy</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">gen</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">because his heart was not functioning properly. He was placed on a </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ventilator to help him breath and was flown by life flight back to M</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ichigan.</span></span></div></div><div style="line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; "><span><br /></span></div></div></span></div></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; "><div align="left" style="line-height: normal; background-color: rgb(255, 255, 255); "><div style="text-align: center;"><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin was very ill. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">After weeks of testing, we learned that Corbin had developed a blood disorder from the way they had re-routed his </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">heart. It was critical that he have another surgery as soon as </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">possible. His second heart surgery wasn’t supposed to take </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">place for another three months, at the soonest, so he would have a </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">chance to heal and grow. But, events s</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">uperseded this initial plan and, </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">at 8 weeks of age, we once again watched our son go off for heart s</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">urgery. After 7 hours in the operating room, we learned that Corbin </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">was critical and would be in the ICU in a few hours. Three hours later, we were able to see him.</span></span></div></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; background-color: rgb(255, 255, 255); "><span><br /></span></div><div align="left" style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><div style="line-height: normal; "></div><div style="text-align: center;"><span class="size10 BookmanOldStyle10" style="min-height: 18px; ">That evening, Corbin’s heart stopped and he was rushed down for his 2nd emergency heart catherization. His heart was just giving up. At</span><span class="size10 BookmanOldStyle10" style="min-height: 18px; ">midnight, Corbin was placed on an ECMO (extracorporeal membrane</span><span class="size10 BookmanOldStyle10" style="min-height: 18px; ">oxygenation) machine that pumped his heart and oxygenated his body </span><span class="size10 BookmanOldStyle10" style="min-height: 18px; ">for him. The goal was to enable his tired, tired body to heal and rest.</span></div></span></div><div align="left" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">Corbin never stabilized, however, despite the rest the ECMO pr</span><span style="font-size: 100%; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ovided. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">So, at 1</span></span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">0 weeks of age, the doctors decided to try another time to repair and re-route his heart. We watched, again, as our precious boy </span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">was wheeled into the operating room. After a grueling 9 hours in</span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; "> surgery, Corbin was taken off the external heart and lung machine. </span><span class="size10 BookmanOldStyle10" style="font-size: 100%; line-height: 18px; min-height: 18px; ">We were so excited to learn that he </span><span style="font-size: 100%; line-height: 18px; ">was brought up to the ICU with his own heart doing all the work!</span></div><div align="left" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin began the slow process of healing. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">But, o</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ne morning we arrived at ICU to learn that Corbin had once again taken a turn for the worse. He was</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> rushed down to the heart </span></span><span style="line-height: 18px; ">catherization OR. We learned that some of his arteries were closing off. And so, we watched the doctors t</span><span style="line-height: 18px; ">ake Corbin to his 4th surgery--in only three months.</span></span></div><div style="line-height: normal; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><br /></span></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-left; background-color: rgb(255, 255, 255); "></div><div style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-left; background-color: rgb(255, 255, 255); "></div></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; text-align: center; "><div style="font-family: Georgia, serif; font-size: 100%; text-align: -webkit-left; background-color: rgb(255, 255, 255); "><span style="margin-right: auto; margin-left: auto; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-VGvyHjdzIf4hDvwS6eh2i5NB9M-nkYCTlhyphenhyphen9Xz_M0Hd-Sa7wUSDm8KJWeLK9bBGDxM99-__lnpknPWGnd_tNBMqH-zdTtZgD5RQAnl3a_o18gTVL-NwhH-GiO5MLQf-otgCejOlue-Q/s320/Corbin_March.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5707585433969848962" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 240px; height: 320px; " /></span><div style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">How very difficult it was to see him go through so much and fight so </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">hard. We questioned if we were doing the right thing. But then Corbin showed us how strong he was. He immediately bounced back </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">and finally came off the ventilator and began breathing on his own. We were so relieved to see such progress.</span></span></div></div><div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><img src="http://www.corbinsfunrun.net/tp.gif" alt="" border="0" width="30" class="lpxtab" style="height: 1em; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; border-image: initial; width: 30px; border-style: initial; border-color: initial; " /></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">But as time went on, we learned that Corbin was draining fluid from</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> the tubes in his chest. He was losing important proteins and </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">fats to help his body heal. So after a long discu</span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ssion with the team,</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> Corbin went in for his 5th surgery. This time, instead of operating through his chest, they entered through his side to stop the bleeding, </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">clear out hi</span><span style="line-height: 18px; ">s chest cavity, and give him a faster recovery. </span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">At six months of age, Corbin was finally ready to come home again. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">He was still a very sick little boy. He flew home with a pump that fed him constantly since he was still unable to suck or swallow without it </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">going into his lungs. He was on oxygen for his lungs and to keep the </span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">pressure in the arteries to his lungs down. His medications were </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">many a</span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">nd overwhelming--he was on 21 different medications given </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">over 60 times a day. And, even though he was six months old, he was </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">developmentally at a newborn level.</span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; "><span class="size10 BookmanOldStyle10" style="min-height: 18px; "><br /></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">During Corbin’s hospital stay, Travis' job transferred us from North Carolina to Virginia, a move which positioned us better financially to handle the looming medical bills. We found a great medical </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">team in Virginia and Corbin made amazing progress. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">He dropped to </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">only six heart medications daily and needed oxygen only at night. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Further, Corbin made great strides developmentally. He learned to eat completely on his own, a skill we wondered if we'd ever witness since he spent so much of his life on a feeding tube.<br /></span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><img src="http://www.corbinsfunrun.net/tp.gif" alt="" border="0" width="30" class="lpxtab" style="height: 1em; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; border-image: initial; width: 30px; border-style: initial; border-color: initial; " /></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">We were so enjoying life with Corbin, which had become relatively </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">stable. B</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">ut </span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">April 2006 started a new chapter. It was then we </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">faced </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">another surgery to repair Corbin's heart. On April 13, 2006 Corbin went in for </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">his 6th open heart surgery. We praye</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">d it would be his last for years </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">to come. He went in physically strong </span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; background-color: rgb(255, 255, 255); "><span style="line-height: 18px; "><span>and the odds were fairly good.</span></span></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; text-align: center; background-color: rgb(255, 255, 255); "><span style="line-height: 18px; "><span><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-left; background-color: rgb(255, 255, 255); "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0nJQmo4hFgBpG4QxRgFk-hIsx988VZJhvM_PxsQV768-XqWPmHWni-nMlv6pzUQL94Spgdir0kVQLAaprQgxnAUssy1MJGTXWVANVzmTEAZexH7eXdOOOu40mirOuB34z7HkL9-YlAig/s320/Christmas_2005_photos_032.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707586598264929474" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 213px; " /></div><div style="text-align: -webkit-left; background-color: rgb(255, 255, 255); "><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; "><span><span style="line-height: 18px; ">The surgery went perfectly. But on the elevator ride from the OR to ICU Corbin’s heart stopped. When we finally saw him, he was critical and bleeding badly from the chest compressions performed to revive him. There was nothing left to be done but wait.</span><span style="line-height: 18px; "> </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; "><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><img src="http://www.corbinsfunrun.net/tp.gif" alt="" border="0" width="30" class="lpxtab" style="height: 1em; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; border-image: initial; width: 30px; border-style: initial; border-color: initial; " /></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></span></div><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Amazingly, he responded over the coming week. We were down graded </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">from ICU to general care and were overjoyed. But, within an hour of</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">leaving the ICU, Corbin's heart stopped while he was in my arms and</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">began bleeding profusely. He was rushed back to ICU. We learned </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">after several hours that they could not get his heart to function again. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin was once again placed on the ECMO to keep his body alive. Again, the hope was to enable him to rest while allowing the surgeons</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "> to determine a course of action. Meanwhile, his need for donated blood </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">was very high; he used over 500 units in just three days. The chest </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">compressions performed to save his life damaged the walls of his chest </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">cavity, causing intense bleeding. They needed to operate again to s</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">top the bleeding or he would not survive.<br /></span></span></div><div align="left" style="text-align: center; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">They stopped the bleeding and we were overjoyed! He remained on ECMO for three more weeks. Then, we celebrated again as he was downgraded from ICU to a unit requiring less care. But our hopes quickly faded when, within days, we learned </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin was not getting any blood flow into his left lung. This would require intervention once </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">again. </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><img src="http://www.corbinsfunrun.net/tp.gif" alt="" border="0" width="30" class="lpxtab" style="height: 1em; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; border-image: initial; width: 30px; border-style: initial; border-color: initial; " /><br /></span></span></div><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><img src="http://www.corbinsfunrun.net/tp.gif" alt="" border="0" width="30" class="lpxtab" style="height: 1em; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; border-image: initial; width: 30px; border-style: initial; border-color: initial; " /></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></span></div><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">After reviewing many options, it was decided to attempt a heart</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">catherization to open the artery. Thus, Corbin was wheeled away for </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">his 10th heart catherization surgery. During the procedure, </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">complications arose and they lost two of the stents that would have </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">opened the artery. Those stents had to be removed from his heart. So Corbin was taken for emergency surgery to remove the stents and r</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">epair his heart. Although they worked for 12 hours, the doctors were </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">able to remove only one stent. The next day, they performed his 9th </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">open heart surgery to remove the final stent.<br /></span></span></div><div align="left" style="text-align: center; "><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><br /></span></div><div align="left" style="text-align: center; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">It was during this surgery that a major complication arose. Corbin was</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">placed on a </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">heart lung pump during surgery and a blood clot passed through </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">to his brain. This caused major bleeding in Corbin's brain.</span></span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; "><span>Corbin never awoke from his last surgery. On June 29, 2006, Corbin passed away after an amazing fight.</span><br /></span></div><br class="Apple-interchange-newline"></div><span style="margin-right: auto; margin-left: auto; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGpkA7_nqqkQhidH-YizK1jo22tKHR04l9Ys_PybOr0WWrlIYU_U_ic3YZJNcZROIG0H75rNPPI5Vyudkird-lh44fTGzj9TbHMfbkj8duhHO7DgaeKv5jJGfgt8rIST_cviYRMkJPW-Q/s320/Corbin.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707587483527091090" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 229px; height: 320px; " /></span></div><div style="text-align: center; background-color: rgb(255, 255, 255); "><span style="margin-right: auto; margin-left: auto; "><span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">We miss Corbin greatly. But we are grateful to God that He gave Corbin to us, even though it was only for a short 23 months. In his </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">brief life on earth, </span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">Corbin taught many big lessons. He taught us perseverance. He taught us to find joy in pain and suffering. He taught us what it means to sacrifice for loved ones. And he taught us to cling to God in prayer.</span><span class="size10 BookmanOldStyle10" style="line-height: 18px; min-height: 18px; ">This was God's plan for Corbin's life, and ours, and God faithfully is guiding us through this trial, for He never leaves us nor forsakes us. Praise be to God. </span></span> </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-left; background-color: rgb(255, 255, 255); "></div><div align="left" style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; background-color: rgb(255, 255, 255); "><span class="size10 BookmanOldStyle10" style="font-size: 13px; line-height: 18px; font-family: 'Bookman Old Style'; min-height: 18px; "><span style="font-family: Georgia, serif; line-height: normal; text-align: center; "> </span></span></div></div></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><br /></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; font-variant: normal; line-height: normal; "><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "><div style="text-align: left; "></div></div><div style="font-family: Georgia, serif; font-size: 100%; "><b><i><span>Soren's Story:</span></i></b></div><div style="font-family: Georgia, serif; font-size: 100%; "><b><i><span><br /></span></i></b></div><div style="font-family: Georgia, serif; font-size: 100%; "><span><span style="color: rgb(34, 34, 34); ">My husband Scott and I found out we were pregnant with baby # 4 in April 2007. We were so excited to find out that we were having another boy. We decided on the name Soren Blake Shafer. Two boy’s two girls! How perfect! I had a rough pregnancy. I was sick all the time. I had lost about 26 pounds during the pregnancy and the doctor wanted to make sure the baby was big enough. So at 30 weeks we went to a high risk specialist to check the baby’s size. He was in the 95th percentile. The ultrasound took what seemed to be a lon</span><span style="color: rgb(34, 34, 34); ">g time. When he was done he said very compassionately, I wish I had better news for you. Your baby’s heart does not look normal. I was in shock. I said, that can’t be right, we are here just to see if he is big enough. I can’t remember much after that. I remember they said it would be wise to do an amino test to check for chromosome problems. I did not know what to do. I had gone to the appointment with my mother so she could see the baby. I really did not think any thing would be wrong and I was just happy to get another sonogram. My husband was at work. My mom called him and told him what the doctor had said. I was so upset I could not talk or think straight. We made plans to go to have the amino test later that day. We went for the test and when we received the results back it was negative for any chromosome problems.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; "><span><span><span> <br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">The high risk doctor made me an appointment to see a cardiologist. At the appointment they did a fetal echo cardiogram. After they were done they asked us to wait in another room</span></span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">. Not too long after the Doctor came in. He said your baby has Hypo-Plastic Left Heart Syndrome. He explained to us that the left side of his heart was so underdeveloped that it was of no use. With out treatment there is no chance of survival. There are 3 options, Compassionate care, where we would just keep him comfortable and spend what time he had with him, Open heart surgery in 3 stages, the Norwood, the Glen and the Fontan, Or a transplant. We were told that even the treatments could not guarantee anything. But we were given hope that he could live. So we left and had a lot to think about and discuss. In our minds we only had two options. God has given man the knowledge to help us. He tells us how precious life is. I believe we should do what we can. So we were left to talk about the 3 stage surgeries or transplant. We decided to </span></span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">go with the 3 stage surgeries. It was the recommendation of Soren’s cardiothoracic surgeon.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; "><span><span> <br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">We had many appointments with cardiology to prepare for his birth. His heart was on the wrong side of his body and backward. It was hard for the cardiologist to tell what was what because every thing was backward and so many of the connections to and from the heart were in the wrong places. We were even told at one point he had hypo-plastic right heart syndrome, because every thing was so backward they thought the right was left and the left was right. That was once again changed back to hypo-plastic left h</span></span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">eart syndrome. We also found out that he had double outlet right ventricle and pulmonary stenosis.</span><span class="apple-converted-space" style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; "></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; "><span> <br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">My OB care was transferred to the high risk ob team at Loma Linda. I began to have monitoring and ob visits there. I was monitored twice a week at Loma Linda and twice a week in Apple Valley. I was given and induction date of Jan 3rd 08.<span class="apple-converted-space"> </span></span><span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">January 2nd came and I went in for an amino test to check to make sure his lungs were mature. If they were the induction would go as planned for the next day. As they were doing the scan for fluid they saw that there was none. I needed to have the induction that day. I was also having some contractions on my own and was also dilated to 3cm. So everyone was called, and everyone came down to the hospital for the birth.</span><br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> </span><div></div><div><span><br /></span></div> <span><span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">The induction started with an IV and a medication called pitocin. I began to have more contraction but they were very weak. I went all day having these really weak contractions. They were giving me as much pitocin as they could and nothing really was happening. At 6 pm they broke my water. At 6:14 pm Soren Blake Shafer was born. He weighed 7 lb 9 oz and was 19 in long. The NICU team started their work. They stabilized him and took him to the NICU. It was 12 hours before we were allowed to see him.</span><br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> <br style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "> <span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">When we went to the NICU to see him it was so surreal. We were showed how to scrub in and we had to put hospital gowns on. After we were scrubbed up we were taken back to him. He looked so perfect. To </span><span style="color: rgb(34, 34, 34); ">Look at him you would never know how sick he was. He had many lines. He had lines coming from his bally button and IV’s in his arms. He had heart monit</span><span style="color: rgb(34, 34, 34); ">ors and monitors to check his oxygen saturation. It just seeme</span><span style="color: rgb(34, 34, 34); ">d like so much for such a little guy.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; "><span style="color: rgb(34, 34, 34); font-family: georgia; font-size: 100%; "><br /></span></div><div><span style="color: rgb(34, 34, 34); "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpZOoZoK3u-2xjjvATO7-4tymLt_TvNHzzocQVVEiIhn6rQ3o9kDv6WLQYyaPJRQWtSuL42z-hUAVGgZ94zNpJMQ5R2HWnYaznvjrh72aQZihyigdFSyFQj5v2ng1ZOweV2qsjnG1XOtw/s320/Soren1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707583356721767762" style="color: rgb(0, 0, 0); font-family: 'Times New Roman'; font-size: medium; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 240px; height: 320px; " /></span></div><div><span style="color: rgb(34, 34, 34); "><br /></span></div><div><span><span style="color: rgb(34, 34, 34); ">He was being given a medication called prostin so keep a duct open in his heart that normally closes after birth. If this duck closes he has no way for his body to get any oxygenated blood, so this medication was needed to keep him alive. One of the side effects of this medication was apnic episodes. Soren would forget to breath. This was happening very frequently so he was put on a ventilator. It was hard to see another tube in him but it was needed. It also ma</span><span style="color: rgb(34, 34, 34); ">de it so we could not hold him much.</span></span></div></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "> <div style="text-align: center; "><div></div><div><span><br /></span></div></div> <span><span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">The doctors and specialist came together and had a conference to decide what was the best way to treat Soren and how and what to do in surgery. Surgery was scheduled for January 11th. Soren was having the Norwood procedure.</div></span> </span><div style="text-align: center; "><span><br /></span></div> <span><span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">Meanwhile I had become ill. I was admitted back to Labor and Delivery with preeclampcia. I did not even know you could get it after delivery but found out you can develop if for up to six weeks post partum. I was there a couple of days. I was getting better and was released. That same night I was rushed back in severer pain. They took me back to Labor and Delivery assuming that is was a complication of delivery. They spent the whole day doing tests and could not figure out what was wrong so I was sent down to the E.R. The E.R ran tests.<span class="apple-converted-space"> </span></div></span> </span><div style="text-align: center; "><span><br /></span></div> <span><span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">This was the morning of January 11th. I was still in the E.R and Soren was going into surgery. The E.R let me go and hold him and say good-bye before they took him back. While he was in surgery, all my tests came back. I had kidney stones. I was so relieved that it was not something worse. I was given pain meds and told what to do. I was released tat the same time we received the call telling us Soren was out of surgery. I was so glad he had made it through surgery.</div></span></span><div style="text-align: center; "><span><br /></span></div> <span><span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;">As soon as I was released we went to his room. He had been in the NICU before and after surgery he went to the Pediatric Cardiac Intensive Care Unit. Soren’s kidneys were not functioning after surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.<span class="apple-converted-space"> </span></div></span></span><div style="text-align: center; background-color: rgba(255, 255, 255, 0.917969); "><div><span><br /></span></div><span><span>We went to the desk and were showed to his new room. I was shocked at what we saw. I don’t know what I expected him to look like but this was the first time he really looked very sick. I just cried. He was so swollen and he really looked like he was dead. It was so hard to see him like that. It was difficult to deal with, but we were so grateful that he was alive and now we were focusing on getting him better. </span><span style="text-align: left; color: rgb(34, 34, 34); ">Soren’s kidneys were not functioning af</span><span style="text-align: left; color: rgb(34, 34, 34); ">ter surgery so he had to be put on a mild form of dialysis. After a few days his kidneys were functioning again so he was taken off the dialysis.</span></span><span class="apple-converted-space" style="font-size: 100%; text-align: left; color: rgb(34, 34, 34); font-family: Arial, sans-serif; "> </span></div><div style="font-size: 100%; font-family: Georgia, serif; "><br /></div><span style="font-family: Georgia, serif; font-size: 100%; "><span style="font-family: georgia; text-align: center; background-color: rgba(255, 255, 255, 0.917969); "></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHEKc4e6aKH6al557VXIkoA6xqBiJHl2gG0hQMGbFs_pzXthk9DVzSYgfOVL63INMIkcSMYJWY3Q_eCafgESl2-o7-rBK0y7tcQ7JeHs39g4dsMVj1zizQ-QWoQfBahDdr_G6ljhNB2RU/s320/soren-+Im+fighting+Mommy%2521.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707579690570275858" style="font-family: 'Times New Roman'; font-size: medium; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="font-family: Georgia, serif; font-size: 100%; text-align: center; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">Soren continued to get better each day. He was looking like </span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">him self again. He looked beautiful. On January 17 I received a call that they were going to take him of the ventilator. I was so excited. I rushed back to the hospital and there he was. Not a single tube going in to his face. I had missed seeing his beautiful face with out all the tubes. We were able to get so many beautiful pictures. That day the occupational therapist came in to see where he was as far as learning to take feeding by mouth. He had never had anything by mouth so he did not know how to suck. But he was doing so well, we were told he would be coming home soon. He just needed to learn to eat. He was going to be worked with to learn how to feed. The next day January 18th, a NG tube was put back in to fe</span><span style="background-color: rgba(255, 255, 255, 0.917969); text-align: -webkit-auto; ">ed him while he learned to eat. I had been pumping my breast milk for him so he began to get breadstick through the NG tube. His sisters were able to come for a visit. His brother Brayden had a cold and could not visit. It was wonderful. The girls held him and kissed him and just loved being there with him. They could not wait for him to come home.</span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "> <div style="text-align: center;"><span><br /></span></div> <span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;"><span>On January 19 around 4:00 am I received a call from the PCICU that they had to put Soren back on the ventilator. I had heard many times that sometimes </span><span style="text-align: -webkit-auto; ">if they are taken of too early they might have to be put back on it. I just figured that was what happened. I knew that it was one step forward two steps back, with all these heart babies. So that morning I got up and rushed to the hospital to see him.</span><span class="apple-converted-space" style="text-align: -webkit-auto; "> </span></div></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "> <div style="text-align: center;"><span><br /></span></div> <span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;"><span>I got to the hospital about 7:00 am. I went to his room and took one look at him and knew something was wrong. He looked very sick and did not even open his eyes. I stayed with him for a while and kept telling his nurse he does not look good, something is wrong.</span><span class="apple-converted-space"> </span><span>I had been staying at Ronald McDonald House, Loma Linda. I went back there to get something to eat and meet my husband who was coming down from where we live. We both went back to the hospital and he was shocked to see how much worse he looke</span><span style="text-align: -webkit-auto; ">d. Soren belly was so swollen and it had become ridged. I asked his nurse to get a doctor in there. All day I had bee told that the doctor would be coming in to check on him during rounds. I did not want to wait anymore. His nurse told me it was probably air in his belly from being bagged when he had coded during the night. I told him I just could not imagine how uncomfortable that must be for him. I know when I get even a little bit bloated I feel awful. Can you imagine how much that must hurt to have so much air that your belly is so distended and hard! He got the doctor for me and the doctor looked at him and told his nurse that they need to use a machine that has a gently suction to suction his stomach. I was glad something was going to be done. We had to leave so they could do it. We went back to Ronald McDonal</span><span style="text-align: -webkit-auto; ">d House. We had not been gone long and got a call to come back to the hospital. We were met by the Pediatric surgeons‘. We were told they need to do and emergency abdominal exploration surgery because they were very concerned about what they had found while doing the suction and an x-ray had also been done and it did not look good. We were told it would be about 2 hours. The baby in the room with him and had a similar set back where a part of his bowel had died and it had to be cut out. But he had come through it was doing ok. I was thinking this was the same thing. I was worried but not too much. I thought they would just fix it and he would recover. We decided to get something to eat as we had not eaten yet and knew we would not want to leave once he was back form surgery. We picked up a sub to eat and went back to Ronald McDonald house. We walked in to our room to eat and t</span><span style="text-align: -webkit-auto; ">he phone rang. It was the PCICU. They asked us to come back. It had only been a half hour since we left and we were told it would take a couple of hours. I asked how he was doing and the lady on the phone told me the doctor would talk to me about everything when we got there. I knew it must be bad when they would not tell me how he was.</span></div></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "> <div style="text-align: center; "><span><br /></span></div> <span><span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center;"><span>We got to the hospital and went to his room. Soren was in there, but the other baby was gone. I thought that was strange but I was so happy he was in there and he was alive. I had begun to think maybe he did not make it through surgery when they would not tell me how he was.</span></div></span> </span><div style="text-align: center; "><span><br /></span></div> <span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><div style="text-align: center; "><span>The surgeon came in, and told us, his heart was not able to get enough oxygenated blood to his digestive organs and everything had died. There was nothing mo</span><span style="text-align: -webkit-auto; ">re they could do for him. He was going to die. I was devastated. I could not believe there was nothing they could do. I told them can’t you do something! This is my baby! God gave him to me because he wanted me to have him! I even asked if they could take mine and give it to him. Anything to save him. All they could say was they were very sorry but there was nothing they could do. We called our family and every came. My Mom and Dad had already been on there way when I called to tell them he was going into surgery. So they got there and they called everyone else and had everyone come to say their good-byes. My parents, my sisters, my sister Lisa’s boyfriend Richard, By brother John, a dear family friend Hea</span><span style="text-align: -webkit-auto; ">ther, my good friend Randa, who also had a baby in the hospital and was staying at Ronald McDonald House, and our children Allison, Jocelyn and Brayden ala came. We all took turns holding him. We were able to take our only family picture that night. We prayed and cried. At 4:10 am on January 20th, Soren Blake Shafer died in my arms.</span></div></span></div><div style="font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; font-family: Georgia, serif; "><div style="text-align: -webkit-auto;"><br /></div></div><span style="font-family: Georgia, serif; font-size: 100%; font-variant: normal; line-height: normal; font-style: normal; font-weight: normal; "><span style="margin-right: auto; margin-left: auto; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8gQUA0Nbs9eg1TKJdkC1LIdGSahyphenhyphenJSOfrwR0zJ6V2Cj-hvi2jq565GE3jyAU1-uwaFG_0SyXd3-UqLleAVIS0GY57coXenqvdJccfLobdX_H7MUGx3KBf6qSUNSWAE35ZUqg42-WQ6Kg/s320/soren.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707579774082113442" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></span></span><div style="font-variant: normal; line-height: normal; "><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); ">I miss my Beautiful Baby. I will never forget you Soren. Never was there a baby more loved or wanted. You were a remarkable little boy. In just 17 days you completed what God sent you here for. You did what takes most of us a lifetime in just a few short days. Even God knew how special you were and called you home. I love you so much.</span> </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: Georgia, serif; font-size: 16px; text-align: -webkit-auto; background-color: rgba(255, 255, 255, 0.917969); "><br /></span></div><div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><br /></div><div style="text-align: center; "><b><i><span ><br /></span></i></b></div><div style="text-align: center; "><b><i><span >**PLEASE tell ONE person about Congenital</span></i></b></div><div style="text-align: center; "><b><i><span >Heart Defects!!! Just ONE!!!</span></i></b></div><div style="text-align: center; "><b><i><span >I DARE you!!!**</span></i></b></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><span style="font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; font-family: verdana; "><div style="text-align: center;">~~<a href="http://www.mylivesignature.com/" target="_blank" style="font-size: 100%; "><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a>~~</div></span></div></div></div></div></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-61844598520104374782012-02-09T00:12:00.000-08:002012-02-09T19:19:39.674-08:00Connected by Heart ~ Day 2<div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><b><i><span>Connected By Heart...</span></i></b></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span>The Congenital Heart Defect Journey CHDers and </span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span>CHD </span><span style="font-family: georgia; font-size: 100%; ">parents </span><span style="font-family: georgia; font-size: 100%; ">travel on is never easy, but it can be filled </span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-family: georgia; font-size: 100%; ">with so much </span><span style="font-family: georgia; font-size: 100%; ">joy despite everything and CHDers give </span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-family: georgia; font-size: 100%; ">so much joy</span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><i><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: pointer; "><b>Journey: </b>passage</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">or</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">progress</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">from</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">one</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">stage</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">to</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">another</span></i></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><i><b><span name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; "><br /></span></b></i></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "><b><i>Joy:</i></b><span> </span></span><i><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: pointer; ">something</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">or </span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "></span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">someone</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">greatly</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">valued</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; ">or</span><span style="font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; "> </span><span id="hotword" name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">appreciated </span></i></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><i><span name="hotword" style="position: static; font-family: verdana; text-align: left; background-color: rgb(255, 255, 255); font-size: small; cursor: default; ">& the emotion of </span></i><i style="background-color: rgb(255, 255, 255); font-family: verdana; font-size: small; text-align: left; ">great happiness</i></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><i><span><br /></span></i></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-weight: normal; text-align: center; "><span><i>Today is all about J's... </i>What better way to represent </span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span>the journey </span><span>and the joy than three CHD warrior stories </span></span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-weight: normal; text-align: center; "><span><span>that </span></span><span style="font-size: 100%; "><span>all </span></span><span style="font-size: 100%; font-family: georgia; ">have a name </span><span style="font-size: 100%; font-family: georgia; ">starting with J...</span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-style: normal; font-weight: normal; text-align: center; "><i style="font-family: georgia; font-size: 100%; ">Today is the three J's...</i></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><br /></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span><b><i>Jacob's Story:</i></b></span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><p class="MsoNormal"><span style="color: rgb(51, 51, 51); "><span>It all started when I was going for my six month ultrasound and I was told I was having a healthy baby girl, I was a bit confused because I didn't feel like I was carrying a girl. So as I patiently waited on the arrival of my second daughter I told a few people that Lisa was going to have a sister. Got a few gifts cute girl clothes pink teddy bears and such. On July 1st, 2001 I hit my 42nd week the doctor said to go to the hospital to be induced. When I arrived the doctor gave me Pitocin to induce the labor. I was progressing along ni</span></span><span style="color: rgb(51, 51, 51); "><span>cely the </span></span><span style="color: rgb(51, 51, 51); "><span>pain wasn't too bad until I was about 7 cm dilated I needed an epidural. It's a wonder drug, I felt nothing. After about 7 hours I was ready to deliver I had trouble with the pushing either due to the epidural (cause I couldn't feel anything) or cause his head was so huge. When I finally pushed him out the doctor told me I had a beautiful baby girl I named her Arianna. As he handed my daughter over to the nurse to be cleaned she called him over. They were talking amongst themselves and the doctor came over to me and said we are not sure if the baby is male or female and they were going to place him in the NICU as a precaution. As the nurse was giving him tests she heard a murmur and proceeded to do an echo </span></span><span style="color: rgb(51, 51, 51); "><span>on him. This is where they found he had Hypoplastic Left Heart Syndrome. They gave him medication so the ductus arteriosus would remain open. This was the only thing that was flowing oxygenated b</span></span><span style="font-family: georgia; color: rgb(51, 51, 51); ">lood through his body this is why he wasn't blue at birth. If it wasnt for the ambiguous genitalia they would have put him in the regular nursery where the ductus arteriosus would have closed and he would have had nothing but deoxygenated blood flowing through him. He was then transported to Columbia Presbyterian to have his first surgery done. He had his first open heart surgery at six days old they gave him a surviva</span><span style="font-family: georgia; color: rgb(51, 51, 51); ">l rate of 80% becaus</span><span style="font-family: georgia; color: rgb(51, 51, 51); ">e he had a good weight. He was 7 pounds 13 ounces (I still the 7 pounds was all head) Jake was almost not a candidate for the surgery cause the small stent was too </span><span style="font-family: georgia; color: rgb(51, 51, 51); ">small and the medium one was too big.</span></p><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjadxkzHdu-k8qK_cueZFqmLfQG6n4Mse_Zesh-RAlgzqaG9QkLSnnI-PKI3BPAVFCJsUhi12wnApb7JSQSGaTpLUdJuy6zNwFtFVXvFTN2TRWn19PCwXeI0BakeH19WwZ-fi0wED-zN_M/s320/Jacob1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707245487239402178" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 235px; " /></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; "><div style="text-align: center;"><span style="font-family: georgia; color: rgb(51, 51, 51); text-align: left; ">His surgeon Dr Ralph Mosca was awesome he cut the medium stent till it fit. He was in the hospital for 3 months after the surgery just known as Baby Rosa. During the time there he had some genetic testing done to see what his sex was. Was it a boy, was it a girl, or just a hermaphrodite. When the test came back it showed XY Chromosome he was a boy (xx=girl) (xy=boy)(xxy=hermaphrodite) So he was now Jacob Ryan Rosa. When I finally brought Jake home he was loaded with medications around the clock and a feeding machine. I needed a visiting nurse who was late he was screaming cause he was </span><span style="font-family: georgia; color: rgb(51, 51, 51); text-align: left; ">hungry, he wouldn't bottle feed so I tried the bolus it leaked all over him I cried to my mother to bring him back to the hospital because I didn't know how he worked. Jake is now 4 months old I see a huge bump on his head. I brought him into the ER where they x rayed him while waiting on the xray he fell asleep a nurse walked by and looked at him and asked if he was OK when I looked at him he started turning grey the nurse went took his blood and it was coming out purple he had no oxygenated blood flowing through him. They admitted him upstairs by the time he got upstairs the bump was completely gone. Jake wa</span><span style="font-family: georgia; color: rgb(51, 51, 51); text-align: left; ">s soon transported to Columbia Presbyterian where he was put in an oxygen bubble which didnt work. So he went to the OR for an angioplasty. His O2 sats were still poor so they decided to do the second stage of the surgery early. His weight wasn't good enough for it but without it he will die. He came out of the surgery with few complications and was released in 5 days. He was doing great. By the age of 2 he went for his last surgery. For the next few years he was doing very well. By age 4 his heart rate was dropping to 40 BPM so he had to wear a 24 hour heart monitor upon reviewing the results the doctor said that Jake was flat lining every 3 seconds throughout the night it was time for a pacem</span><span style="color: rgb(51, 51, 51); font-family: georgia; text-align: left; ">aker.</span></div><p class="MsoNormal"><span style="color: rgb(51, 51, 51); "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4oIJUqQ_JjnJnYtfjAhW-IY08_ggd5q4xPiGGOPLlSNTd7Em06c3dPI8MHYiisXdJCW0Yh6I4216h4RKKcxmQQ2ueQNzo7agw4NN5wdhLJa7A0pTxhNaKZdO5qSxObSPKdp-5FjPI03s/s320/Jacob2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707245644737217314" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 240px; height: 320px; " /></span></p><p class="MsoNormal" style="text-align: center;"><span style="color: rgb(51, 51, 51); "><span>He is now 10 and bouncing around like a typical 10 year old boy should. He is about 2 years behind his physical age. He is in Special Ed and takes speech and occupational therapies he no longer needs physical therapy. </span></span><span style="font-size:10.0pt;font-family:"Tahoma","sans-serif";mso-fareast-font-family: "Times New Roman";color:#333333"><o:p></o:p></span></p></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span><br /></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; "><span><span class="apple-converted-space"><span style="color: rgb(34, 34, 34); "><b><i>Joshua's Story:</i></b> </span></span></span></p><p class="MsoNormal" style="font-family: Georgia, serif; font-size: 100%; "><span><span style="color: rgb(34, 34, 34); ">I was about 16 weeks along when I went for an ultrasound. I've alwa</span></span><span style="font-size: 100%; "><span style="color: rgb(34, 34, 34); ">ys been high-risk </span></span><span style="font-size: medium; color: rgb(34, 34, 34); font-family: georgia; ">because </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">of being diabetic and losing 5 babies. I saw the flicker of the baby's heartbeat and thought everything was ok. </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">Then the </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">doctor came in and said "As you know, we're looking at a</span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); "> large hole in the heart." No, I didn't know. The next few </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">weeks were a </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">whirlwind of genetic testing and the OB kept </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">asking if I wanted to abort. For me, no matter what the </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">outcome would be, I couldn't do that. April 28, 2009, Joshua </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">was born via c-section. The NICU at th</span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">e hospital gave him to </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">me to see for only 2 minutes before they transferred him via </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">ambulance to the Children's Hospital of Michigan. I busted </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">my butt to g</span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">et discharged so I could be with my baby. I </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">didn't get my staples out for a month because I wouldn't </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">leave him to go back to the other hospital. First time I saw </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); "> him, I was terrified. I wasn't prepared for him to look like </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">that, with all those wires and tubes. :( They had done </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">testing to see </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">what all was wrong and he was diagnosed with </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">Tetrology of Fallot, Pulmonary Atresia, Complete </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">Atrioventricular Canal Defect Type A, as well as a T3 </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">hemi-vertebra and an inferior and swiveled right kidney. The </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">BT shunt was done at 8 days old. Unfortunately, my sister, </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">brother and cousin were also due around that time so I was </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">alone. He </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">was in the NICU for 3 weeks and before he could be </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">discharged, I had to learn CPR as well as how t</span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">o place his </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">NG feeding tube. The NG tube was the scariest for me and </span><span style="font-size: medium; font-family: georgia; color: rgb(34, 34, 34); ">deserv</span><span style="font-size: medium; color: rgb(34, 34, 34); font-family: georgia; ">edly so.</span></p><span><span style="font-size: 100%; margin-right: auto; margin-left: auto;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY4z7D264LNWjI3rCbFWyoaHDwSQdYOqNQ9n0ag5HX9fWfLdQSxteHbLhIKezCT7BO-Z-qBHhnyYc-FJceblI0hxcm5uwAlXXr6Q0Fcs0qnMa5F2iClUJBb2KE2AI2cqhY1vWc3Xlh6uU/s320/Joshua3.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707243258373529474" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; "><div style="text-align: center;"><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">He wound up pulling it out at least 5 times a </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">day and was later diagnosed with choeneal atresia and CHARGE </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">Syndrome as well. He had failed his newborn hearin</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">g </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">screening four times and it was discovered that he had </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">bilat</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">eral sensorineural hearing loss. At 4 months of age, he </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">received a G-tube and at 10 months, the Mick-y button. He </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">was in OT and PT to help him to learn and eat and develop </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">his gross motor skills. He had a heart cath in Oct. '09 and </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">it was discovered that he would need the repair soon and his </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">O2 sats were at 49. So on Nov. 10th, at 6 months of age, he </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">had his tet repair. He had to be reintubated four times as </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">he kept crashing. His breathing became retracted and it was</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); "> discovered that his right lung had collapsed and blood was </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">pooling around his heart. That was horrible for me to s</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">ee my </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">baby struggling like that. They had to do a conduit </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">as </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">opposed to the patch so he will need surgery to replace the </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">conduit every 2-5 years. His mitral and tricu</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">spid valves </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">both leaked after the repair but the tricuspid closed up o</span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">n </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">its own.</span></div><div style="text-align: center;"><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); "><br /></span></div><div style="text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7xevfDgW130sUw4gcP9GM82B2H19SBnKuYOfe0xgQzDbPTYyO51PZkcHGAa4rPppgbvjVlynDfE3dAT2kfeMfv6OBCi4xwunnTzCGxXi5J8SQPwXjumAmEzsxCkjp21kc5hcZTWLZ6jI/s320/Joshua4.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707243793070884802" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="text-align: center;"><span style="font-family: georgia; color: rgb(34, 34, 34); ">He had surgery to repair the mitral leak, replace </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">the conduit and do a pulmonary angioplasty on Aug.23rd, </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">2011. He suffered a min-stroke post-op and it took weeks for </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">him to fully recover but thankfully, he did recover. He has </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">also had surgery on his ears </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">and his testicles. For now, he </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">is a happy, smiling, amazing warrior and I couldn't be </span><span style="font-family: georgia; color: rgb(34, 34, 34); ">prouder to be his mom.</span></div><div><span style="font-family: georgia; color: rgb(34, 34, 34); "><br /></span></div><div style="text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0ltdISQ0o9kDht7rqZGXUdCUhVxY0tbDMUluTK5MMFlZLC3MOQ4bahL0U9R_xk3ez2iqGpG1uVqdRDvA4KrniIl7Zl_bmdktSS86yzOys0CGpomSFwWX_b6xfwWph-o3Twa7Lj2mVt1s/s320/Joshua6.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707244029877197538" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 225px; height: 320px; " /></div><div style="text-align: center; "><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); "><3 </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">Sarah, </span><span style="text-align: left; font-family: georgia; color: rgb(34, 34, 34); ">mom of Joshua, Age 2 1/2</span></div></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><b><i>Jilliana's Story:</i></b></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">When I found out I was pregnant with Jilliana I was a single mom of 3 so I was not happy about it. I had been dating someone but decided He wasn't right for me bu</span></span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: georgia; font-size: medium; line-height: 14px; ">t then I found out I was pregnant. I had gone through 3 pregnancies so I</span><span style="font-family: georgia; font-size: medium; color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); "> knew the drill and I was planning on getting an ultrasound to find out how far along I was but then not going back for a while after all I had been through all this and I felt like if God wants this baby to be here it will be here. Well at that ultrasound I found out I was 11 weeks pregnant. The nurse didn't act very happy or smiley which I thought was kinda strange but I didn't think too much of it. A few days later I got a call that I needed to come in and talk to the doctor because something was wrong with the baby. Apparently there was excess fluid around the baby's head and the doctor was thinking the baby possibly had Down Syndrome, Turners Syndrome or some other condition resulting from a chromosomal abnormality. I was definitely shocked. I had 3 healthy kids so the LAST thing I was worried about was something </span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">being wrong with the baby and I immediately felt guilt for at first wishing I wasn't pregnant. I have also never </span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">been the type to worry about my baby being healthy and di</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">dn't understand why people worried about that when it's so rare that something will be wrong. At my next ultrasound the fluid was gone but it appeared that there was a heart problem. Since the fluid was gone I thought the baby was fine and that they just didn't get a good enough picture of the heart. But I assumed wrong. </span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; "><br /></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">More ultrasounds confirmed that the baby, which I found out was a girl, had Hypoplastic Right Heart and would need heart surgeries which really broke my heart. The doctor told me that most couples who's baby has what mine had choose to terminate the pregnancy. I knew that was never an option for me as I am pro-life and well, now was the time to prove it. If she died I didn't want it to be because of me. My doctor would remind me that I could still terminate the pregnancy and I could up to 24 weeks but my answer was alway</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">s no I'm not gonna do that. My kid's pediatrician told me that it's ra</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">re that babies with HRHS live so you can imagine how upset I was to hear that! I didn't buy much for her as I wasn't sure if I would be bringing a baby home! It was terrible I was preparing myself to possibly have to say goodbye to </span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">my baby.</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><br /></span></span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">My due date was December 2nd 2009. I was scheduled to go in for a c-section the morning of Nov. 17th but I had never had a c-section and was incredibly nervous. They were planning on doing a c-section because she was measuring to be over 9 lbs </span></span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">and my 3rd child was 8 lbs 11 oz and I had a hard time delivering him so they were afraid she would get stuck which would be extra terrible because of her condition. Also I was borderline gestational diabetes and babies of moms with gestational diabetes tend to be bigger and there was also a risk to babies of moms with gestational diabetes of passing away late in the pregnancy so to avoid all that they were just going to deliver her early. They were going to do an amniocentesis first to make sure her lungs were developed </span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">which I was VERY nervous about because they stick a long needle into</span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "> </span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">your stomach and draw fluid from around the baby and test it to see if the baby's lungs are developed enough to be born. Wh</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">en I got to the hospital I was already 5 or 6 cm so I was already in labor so there was no point in the amniocentesis because she was on her way regardless of her lungs. I was so relieved to not have to get one done! I was still nervous about the c-section though and upset that if I got a c-section I wouldn't be able to leave the hospital and go to Nationwide Children's Hospital to see the baby the next day. Labor progressed well and the nurse t</span><span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">hought I should just go ahead and deliver her naturally since I h</span></span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">ad already had 3 naturally before. So that's what I did and I'm glad because she was only 7 lbs 13 oz.</span></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; "><br /></span></div><span style="line-height: normal; font-family: Georgia, serif; font-style: normal; font-weight: normal; font-size: 100%; "><span style="font-size: 100%; margin-right: auto; margin-left: auto;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaKDGDfBZKtsPgMjqTNCHdDzaxO-KwWYqxXw7qa-d4KqJkn6iiw3A5Kh4ri-3t31EVLf-4hwKOXq_QlPA-7Iz-55K_ckLyMJgqTSnos2iMcexjU-lj-PgnAagH-bRA9L1mJ_M7W8pMSO0/s320/399515_3103076624841_1502005767_3079322_2133404258_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707048746064907170" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></span></span><div style="font-variant: normal; "><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">I named her Jilliana Noelle. She was the ONLY one of my kids that cried when she came out and she was the one with the heart problems, she was a feisty one from the start. Everyone knew exactly what to do and immediately started doing whatever they needed to do. I only held her for a couple seconds then they took her to the NICU. She was there for an hour or two and then they transferred her to Children's Hospital where they were waiting for her there. That night I spent at the hospital without her was difficult but they let me lave the next morning. I went to see her in the NICU at Children's. The next day they transferred her to the CICU. I cried every time I went to see her it was so hard seeing her with tubes and stuff everywhere and I wished I could stay there all the time but I had my 3 other kids I had to take c</span></span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; font-family: georgia; font-size: medium; ">are of. My daughter Rylee was so excited about having a baby sister and it broke my heart when she asked "where is baby sister?" after she was born but didn't come home. She had her first heart surgery, the B.T. shunt, the day before Thanksgiving.</span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><span><br /></span></span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><span>It went well and she finally got to come home Dec. 4th. She needed a 2nd heart surgery at 6 months old, the bi-directional glen. So the first 6 months were spent trying to get her as big as possible for her 2nd surgery. I had to weigh her every day and write it down in this 3 ring binder and subtract the weight from the day before and that difference needed to be a certain amount or I needed to call the heart center. I also had to write down when </span></span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">she ate and how much and she was supposed to eat 24 oz a day but she never did so her formula was extra concentrated. If she ever ate less than 13 oz in a day I needed to call them and they didn't want me to let her eat for long periods of time because she used up a lot of calories eating so they wanted her to eat a lot quickly. I had to check her hea</span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><span>rt rate and oxygen saturation and write tho</span></span><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">se down as well.</span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; "><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMiLR5pGStN8b5EVGsIN1tiBlIsuQ4eXIdZWF7-Ldt_5hoCNLdrWzXkKlhVC2zLJ_MfREJKIlQrT8GD7EvkzWhXEcdiSlImgpN2EW1wIpkSTpomdlAp5Idz8DezZIQlrjSab6QRXwCyus/s320/409214_3103092905248_1502005767_3079330_983538029_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707048663890902450" style="background-color: rgb(255, 255, 255); font-size: 100%; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="font-family: georgia; font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); line-height: 14px; ">It was a lot of work but she was really chubby when it came time for her 2nd heart surgery which was May 12th 2010. She got up to the 80th percentile for weight! Her 2nd surgery went well. After her chest tubes were removed fluid did re accumulate on her lungs which was causing her her to have a hard time breathing and her lips were blue and her sides were sucking in real deep it was hard to see. I was actually holding her I think they gave me her to hold while they got stuff ready and it was very scary to see her that way. She was in the hospital about a week for the second surgery.</span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span><br /></span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">Now Jilliana is 2 years old and will be having her 3rd surgery, the Fontan, soon (as she is supposed to have it when she is 2.) She is as feisty as ever and although she has slimmed down and is now on the thin side, (she doesn't eat much), she is doing wonderfully!</span> </span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRs0HHfiWUPDUqMWjZ6iiGv4ywO-nkHlyuB0v_lToiC8czZnXd1C3xmfbELobT5UMdzQKktzzRKbuCdPiJjdnzDejj6_2lF-bY3NyMxYchUVzYgcqEzgB-AEy3S611QvgKDidN8zTY2aM/s1600/397950_3103112225731_1502005767_3079340_1041813014_n.jpg" style="font-size: 100%; text-align: left; "><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRs0HHfiWUPDUqMWjZ6iiGv4ywO-nkHlyuB0v_lToiC8czZnXd1C3xmfbELobT5UMdzQKktzzRKbuCdPiJjdnzDejj6_2lF-bY3NyMxYchUVzYgcqEzgB-AEy3S611QvgKDidN8zTY2aM/s320/397950_3103112225731_1502005767_3079340_1041813014_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5707046388658750178" /></a></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">I thank God for her every day and I want people to know that if your </span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">baby is </span><span style="font-size: 100%; color: rgb(51, 51, 51); line-height: 14px; background-color: rgb(255, 255, 255); ">diagnosed with a </span><span style="font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: georgia; line-height: 14px; ">serious heart defect it's NOT </span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; text-align: center; "><span style="font-size: medium; background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: georgia; line-height: 14px; ">a death sentence and </span><span style="background-color: rgb(255, 255, 255); color: rgb(51, 51, 51); font-family: georgia; font-size: medium; line-height: 14px; ">they can have a mostly normal life!</span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "><br /></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "><br /></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "><br /></div><div style="line-height: normal; font-family: Georgia, serif; font-weight: normal; font-size: 100%; font-style: normal; text-align: center; "><b>**Congenital Heart Defects effect 1 in 100 babies </b></div><div style="line-height: normal; font-family: Georgia, serif; font-weight: normal; font-size: 100%; font-style: normal; text-align: center; "><b>born...</b><b style="font-size: 100%; ">CHDs are the World's number ONE birth defect </b></div><div style="line-height: normal; font-family: Georgia, serif; font-weight: normal; font-size: 100%; font-style: normal; text-align: center; "><b style="font-size: 100%; ">and birth </b><b style="font-size: 100%; ">defect killer... Get educated and BE AWARE!!**</b></div><div style="line-height: normal; font-family: Georgia, serif; font-weight: normal; font-size: 100%; font-style: normal; text-align: center; "><b><br /></b></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-weight: normal; "><span style="font-style: normal; "><span><b style="font-style: italic; ">**A great CHD Organization:</b> Children's Heart </span></span></span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-weight: normal; "><span style="font-style: normal; "><span>Foundaton</span></span></span><span style="font-size: 100%; ">.. .if you go to Build A Bear and buy a limited edition </span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-size: 100%; ">Valentine's </span><span style="font-size: 100%; ">Stuffed animal, a portion of each purchase will go </span></div><div style="font-family: Georgia, serif; line-height: normal; font-style: normal; font-weight: normal; font-size: 100%; text-align: center; "><span style="font-size: 100%; ">to </span><span style="font-size: 100%; ">the Children's Heart Foundation for CHDs!!!**</span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-weight: normal; text-align: center; "><span><i>www.childrensheartfoundation.org</i> (go to </span><span style="font-size: 100%; ">there site to read all about</span></div><div style="font-family: Georgia, serif; font-size: 100%; line-height: normal; font-weight: normal; text-align: center; "><span style="font-size: 100%; "> CHDs </span><span style="font-size: 100%; ">and Build A Bear fundraiser)</span></div><div style="line-height: normal; font-family: Georgia, serif; font-size: 100%; font-style: normal; font-weight: normal; "><br /></div><span style="line-height: normal; font-size: 100%; font-style: normal; font-weight: normal; font-family: verdana; "><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-81847887530182725252012-02-08T13:18:00.000-08:002012-02-08T14:14:06.110-08:00Connected by Heart ~ Day 1<div style="text-align: center;"><i style="font-weight: bold; "><span>Connected By Heart</span> </i>is exactly how the Congenital Heart Defect community is connected.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">We ban together to spread hope and inspiration.... we all support each other in trials and truimphs, good and bad... most importantly we ban together </div><div style="text-align: center;">to spreadCHD Awareness to help SAVE LIVES!!</div><div style="text-align: center;">We are mothers, fathers, and Adults survivors...</div><div style="text-align: center;">we are strong!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">The next 6 days I will be posting CHD stories.... 3-4 a day.... some will be about CHD babies & children, others about CHD angels, and than some will be of HOPE from CHD Survivors.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Please share! Please tell ONE person about Congenital Heart Defects... </div><div style="text-align: center;">as just telling ONE person can SAVE a Life!!</div><div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;"></div><div style="text-align: center;">**Before I share the 3 CHD stories today... I share this Music video...</div><div style="text-align: center;">"Before the Morning" by Josh Wilson... </div><div style="text-align: center;">this song sums up so much about the CHD journey... </div><div style="text-align: center;">AND he wrote it for his real life friend who has an 11yr old CHD survivor...</div><div style="text-align: center;">so by all means this song IS about the CHD journey. Enjoy.</div><div style="text-align: center;"><iframe width="560" height="315" src="http://www.youtube.com/embed/New8i_eX3x8" frameborder="0" allowfullscreen=""></iframe></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><b><i><span><br /></span></i></b></div><div style="text-align: center;"><b><i><span>Peyton's Story:</span></i></b></div><div style="text-align: center;"><b><i><span><br /></span></i></b></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgstffupomDdFZEdARTN6DguelsdyT3gOjvGkrMuTTAPMowqWrpLzs_dBerqD3lHCmYZz9buudp5jXxPpguqtYoAOtfzt3YmZNzW2onNN23bUnIWn-a1wwjBiLP7R2tt42fb93ENDUwXC8/s320/2011-12-20_13-13-11_249.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706889157399959730" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 180px; " /></div><div><div style="text-align: center;"><span><span><span style="color: rgb(34, 34, 34); ">It all started when I found I was preggo I was 18 and a senior in high school life was grand I had weird cravings I was happy when I fou</span></span><span><span style="color: rgb(34, 34, 34); ">nd out </span></span><span><span style="color: rgb(34, 34, 34); ">it was a g</span></span><span><span style="color: rgb(34, 34, 34); ">irl. I named her peyton Bryce. Had no idea she was sick. I went in at 12am on Nov 17 2008 to induce my labor I had hard labor for 18 hours then they decided to do an emergency c section then I had my baby girl. Soon to find out she wasn't bre</span></span><span><span style="color: rgb(34, 34, 34); ">ath</span></span><span><span style="color: rgb(34, 34, 34); ">ing... I was so scared ... you always wait for that cry and she never took it. She was very cyanotic and they wisked her away to the nicu the next thing I know she's being air lifted to Arkansas children's </span></span><span><span style="color: rgb(34, 34, 34); ">hospital and </span></span><span style="text-align: left; "><span style="color: rgb(34, 34, 34); ">had her first open heart surgery Nov 23(Thanksgiving</span></span><span style="text-align: left; "><span style="color: rgb(34, 34, 34); ">) 6 days later she got a bt shunt. We were finally able to take her home Christmas eve and she was on o2 we stayed home saw the cardiologist every 2 weeks. She was diagnosed with TOF pa VSD 22Q digeorge syndrome. She had a tet spell in march of 2009 and had surgery in April. She got the Melbourne shunt We spent a month & half at ACH. We came home and then she started walking. A year later we went back for her 3 ohs I wouldn't call it a repair BC she has to have it changed every 2 or 3 years. She got the bovine conduit in April 2010. She's been doing great and sees the</span></span><span style="text-align: left; "><span style="color: rgb(34, 34, 34); ">cardiologist every 3 months.</span><span style="color: rgb(34, 34, 34); "> </span><span style="color: rgb(34, 34, 34); ">We also found out in t</span></span><span style="text-align: left; "><span style="color: rgb(34, 34, 34); ">he past year she is color blind !!</span><span style="color: rgb(34, 34, 34); "> </span><span style="color: rgb(34, 34, 34); ">Being a mom to a disabled child is hard and has its obstacles ups and downs tears of joy tears of sad. Its like anoasis or plateau</span><span style="color: rgb(34, 34, 34); "> </span><span style="color: rgb(34, 34, 34); ">I loving being a mommy to miss Peyton! She is my world & I wouldn't cha</span></span><span style="text-align: left; color: rgb(34, 34, 34); font-size: medium; ">nge it! I love my heart moms they help u get thru the day!</span></span></div><div><p class="MsoNormal"><span><span style="font-family: Arial, sans-serif; color: rgb(34, 34, 34); "><br /></span></span></p><p class="MsoNormal"></p><div style="text-align: center; "></div><p></p><p class="MsoNormal" style="text-align: center;"><span><b><i>Robbie's Story:</i></b></span></p><p class="MsoNormal"></p><div></div><div><div style="text-align: center; "></div></div><div style="text-align: center;"><span style="text-align: left; font-size: 12pt; ">Robbie was conceived 1 month after I lost a child at 18.5 weeks gestation due to incompetent cervix. I had a cerclage at 12 weeks. at 14 weeks, I was </span><span style="text-align: left; font-size: 12pt; ">funneled to the stitch. I was on bed rest 5.5 months. I went into labor at 25 weeks, which was stopped with drugs. I had shots to mature his lungs and was made awar</span><span style="text-align: left; font-size: 12pt; ">e of the complications that are associated with a birth at 25 weeks. The Dr</span><span style="text-align: left; font-size: 12pt; ">'s said they expected him soon and wanted me prepared because babies are </span><span style="text-align: left; font-size: 12pt; ">rarely healthy that early. I had gestational diabetes and took insulin. we approached each week as a new developmental goal and the objective was to keep him in as long as possible. I had at home monitoring with a c</span><span style="text-align: left; font-size: 12pt; ">ontraction monitor and faxed results twice a day. After many scares, I had the cerclage removed at 36 weeks, and was INDUCED at 40 weeks. He wouldn't come out! He was ta</span><span style="text-align: left; font-size: 12pt; ">ken by C-Sec 13 hours later.</span></div><div style="text-align: center;"><span style="text-align: left; font-size: 12pt; "><br /></span></div><div style="text-align: center;"><span style="text-align: left; font-size: 12pt; ">After his pedi did his first physical, The head of pediatric cardiology came to talk to me. I was devastated as soon as he introduced himself. He looked really worried too. I'll never forget this moment. He said, your son has a very large hole in his h</span><span style="text-align: left; font-size: 12pt; ">eart. 3/4's the size of his heart wall. I thought he </span><span style="text-align: left; font-size: 12pt; ">was telling me I </span><span style="text-align: left; font-size: 12pt; ">was going to lose another child. He said we'd wait and see what happened. but, that he would probably need surgery. I was wrecked. So was my husband. We had thought if we'd survived this pregnancy, we'd be in the clear. We told our family, not exactly tel</span><span style="text-align: left; font-size: 12pt; ">ling the seriousness of the situation. our whole family was heartbroken.</span></div><div style="text-align: center;"><span style="text-align: left; font-size: 12pt; "><br /></span></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikimHEVKUCSe8hJNjbU4Gj0VSiwAR_nXYzjqhmBlyeVbuI1JAxaQ5nTA-d8JC4dH6cpo2Yqx5fpLb68ZNQzOcgrSNo-DP3gts7cbS7CxVgLFAzMRQjGI4a4M2dqzn39Jnx3D8XUKRBquQ/s320/r04.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706888173475400482" style="text-align: center; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /><div></div><div style="text-align: center; "></div><p class="MsoNormal" style="text-align: center;"><span style="font-size: 12pt; "><span style="color: rgb(34, 34, 34); font-family: Arial, sans-serif; font-size: medium; "> </span></span><span style="font-size: 12pt; ">Shortly after coming home, Robbie went into heart failure. we brought him to the ER, they transferred him to Yale by ambulance. He was given MANY drugs and I w</span><span style="font-size: 12pt; ">as taught how to administer them. we were there a week. His day started at 5 am with his first dose till his last dose at midnight. I slept him in my bed so I could watch him to make sure he kept breathing. He was good about tw</span><span style="font-size: 12pt; ">o weeks on the meds. One day I noticed he'd slept all day(which wasn't so unusual since he was so week. He'd only eaten 2</span><span style="font-size: 12pt; ">oz of formula all day and his breathing was weird and he was pulling at the ribs. I rushed him to the pedi, who looked scared and had me take him to </span><span style="font-size: 12pt; ">the ER, they pus</span><span style="font-size: 12pt; ">hed us right through to Nicu. They gave him oxygen, and a feeding tube, and told me to call my priest. We had a baptism for him in the hospital, which I knew was really his last right</span><span style="font-size: 12pt; ">s incase something went wrong, Robbie was transferred to Yale Children’s Hospital. They remembered us when we got there. Robbie had his surgery July 17th, 2005 at seven weeks old. They found an additional hole in his heart a</span><span style="font-size: 12pt; ">nd sewed that when they patched the other hole.</span></p><p class="MsoNormal" style="text-align: center;"><span style="font-size:12.0pt">I can tell you I have never seen anything as horrible as wh</span><span style="font-size: 12pt; ">at Robbie looked like in that bed after the surgery. I was told he w</span><span style="font-size: 12pt; ">ould be paralyzed the first night so he wouldn't hurt himself. He did, for just a second open </span><span style="font-size: 12pt; ">his eyes and smile at me, like to tell me he'd be okay. He was a miracle. truly. It was a horrible journey, but the reward is someone I could never </span><span style="font-size: 12pt; ">express in mere words his meaning to me. This child saved my life and restored my faith. 4 days later he was home like nothing ha</span><span style="font-size: 12pt; ">ppened! He was a whole new kid! He was weak for a long time, b</span><span style="font-size: 12pt; ">ut he didn't even have pain meds when he came home</span><span style="font-size: 12pt; ">! He's amazing. He has had great follow ups sin</span><span style="font-size: 12pt; ">ce and now only has to be checked every three years!</span></p><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxp2TIz0ezeezoiX8XvcgOpipPnmXaaTKMzmKjYosM0Pk2vlH026wpAUvoYaBXMbMNvqtYk6LpsRu6sSWGMQ8jDb8Gzx2Ws4mTLCZxNpgvHB8PB0WpZDnRc4nBqLngTAK3gfJz95doKLQ/s400/power+capes.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706887204485661906" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 98px; height: 130px; " /><p class="MsoNormal" style="text-align: center;"><span style="font-size:12.0pt">He is a healthy 6 year old now, he</span><span style="font-size: 12pt; ">has no idea he was ever sick! I've tried to explain </span><span style="font-size: 12pt; ">but he doesn't get it yet. He's still a little small but within healthy limits. He'll need no additional surgeries. I tell him all the time that the Dr's fixed his heart, and he fixed mine. He is my best friend.</span></p><p class="MsoNormal"><span style="font-size:12.0pt"></span></p><div><div style="text-align: center; "><span style="font-size:12.0pt"><br /></span></div></div><p class="MsoNormal" style="text-align: center;"><b><i><span>Logan's Story:</span></i></b></p><div style="text-align: center; "></div></div><div><div style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>November 3<sup>rd</sup>, 2006 we celebrated the birth of our second child, a baby boy, named Logan. He was absolutely perfect and had a full head of dark hair. After a normal hospital stay we got to take our sweet baby home. Little did we know at the time that he was hiding a life threatening condition. We spent the next two weeks spoiling our little guy and enjoying watchi</span></span><span style="color: rgb(34, 34, 34); "><span>ng our oldest son bond with his baby brother. Everything was abs</span></span><span style="color: rgb(34, 34, 34); "><span>olutely perfect, or so </span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">we thought.</span></span></div><p class="MsoNormal"><span style="font-size: medium; color: rgb(34, 34, 34); font-family: Arial, sans-serif; "></span></p><div style="color: rgb(0, 0, 0); font-family: Georgia, serif; font-size: 16px; text-align: center; "><span style="font-size: medium; color: rgb(34, 34, 34); font-family: Arial, sans-serif; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8X-aouJgHh2mwOORTlDmD4Yirdlj86ae-dpq2uZbjHLJwIuUr34HJHIup3uSUNPDyGE8MQhNQtkyHyH-QwfEMwy2qv_l14b5_1XeEqn_5WXOaxjMYn2p8-RSnBEc9Fj8eNlpqZP1en_w/s320/11-6-2006-146+%25282%2529.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706886312128656978" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 239px; " /></span></div><div style="color: rgb(0, 0, 0); font-family: Georgia, serif; font-size: 16px; "></div><div style="color: rgb(0, 0, 0); font-family: Georgia, serif; font-size: 16px; "></div><p style="color: rgb(0, 0, 0); font-family: Georgia, serif; font-size: 16px; "></p><div style="color: rgb(0, 0, 0); font-family: Georgia, serif; font-size: 16px; "></div><p></p> <p class="MsoNormal"><span style="font-family: Arial, sans-serif; color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span style="color: rgb(34, 34, 34); "><span>Our seemingly perfect existence was shattered at Logan’s two week well child check up when our pediatrician uttered those fateful words, “I hear a heart murmur.” He immediately sent us down the hall for a chest x-ray and EKG. The entire time I felt like I was having an out of body experience because it did not seem like it was really happening. “<i>What? A heart murmur? How can there be anything wrong with my baby? Not my baby!”</i><o:p></o:p></span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>After the tests we returned to our pediatrician’s office to a</span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">wait the ne</span><span style="color: rgb(34, 34, 34); font-size: medium; ">ws. They called me back to a room where two doctors were standing looking at Logan’s chest x-rays and pointing at his tiny little heart. My heart raced and my knees felt like they were going to buckle when I saw the look on their faces. It was sadness. They saw what appeared to be a very large hole in his heart but they weren’t 100% for sure. What concerned them the most was that the x-rays showed he was in heart failure. To say that I cried my heart out upon hearing those words is probably an understatement. I was </span><span style="color: rgb(34, 34, 34); font-size: medium; ">completely devastated and terrified out of my mind.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>They sent us home with an appointment to see a cardiologist at the University of Iowa Children’s hospital in three days. Those were the longest three days o</span></span><span style="color: rgb(34, 34, 34); font-size: medium; ">f my life.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>We saw the cardiologist after undergoing many tests including an echo. The final diagnosis served as a big blow. Not only did Logan have a large VSD but he also had four other very complex heart defects, all life threatening. We were shown a picture that illustrated his D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary</span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">Stenosis, Right Aortic Arch and his Large VSD. His current oxygen</span><span style="font-size: medium; color: rgb(34, 34, 34); ">saturations at the time of his diagnosis were 66%. Normal is 100%. He was dying. They took him from us immediately and performed a procedure in the cath lab to save his life. My husband and I were in a constant state of fear. We cried and we cried until there weren’t any tears left to cry. It was heartbreaking and we were scared for the precious life of our child. The next three days Logan was in the NICU and during that time we learned all about his condition, how to take care of him and were informed what the future would hold for our son. Many surgeries.</span></span></p><div style="text-align: center; "></div><p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>We got to take Logan home for two weeks before he began to decline again and it was time for his first heart surgery, the Bt Shunt. One of the hardest things I have eve</span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">r had to do is hand my baby over to the arms of strangers. To entrust them with his life.</span></span></p><p class="MsoNormal"></p><div style="text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhS_IhccVD-i8zi8wvJpT3JhnPhuRkfMkcAD72G7-cVqqff43PV9fN_PVrXi0i6vxC_a1IqYwKisYt_8IwPKjMmsMNwFr_2SDAGE5X0OQEkZVyTeRJRSTPllr8CLKrlt8T9K5L79t_SMe8/s320/Preview95_095+%25282%2529.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706885453632117778" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 320px; height: 240px; " /></div><p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>His surgery went well but his recovery was long and full of complications. We spent 31 days in the hospital following his surgery through focal seizures, breathing issues, feeding difficulties including a severe oral aversion and bloody stools. When he was finally discharged he came home with many new accessories, a feeding tube and numerous medications. Life was definitely stressful for a while and sleep was almost unheard of with tube feedings every three hours twenty four hours p</span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">er day and severe acid reflux. The one and only thing that helped us to survive that madness was the fact that we were beyond grateful to still have him with us. We knew full well that the odds had been against us and that other families had not been so lucky.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); "><span>Since that time Logan has underwent two more heart surgeries, one his full repair-the Rastelli Procedure with RV-PA reconstruction using a Contegra Conduit at 10 months old and the other at 3 years old to replace his conduit with a homograft and to remove muscular growth in his RVOT. Both surgeries resulted in more post surgical complications fro</span></span><span style="font-size: medium; color: rgb(34, 34, 34); ">m airway issues to Dresslers Syndrome. Both were later resolved.</span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span style="color: rgb(34, 34, 34); "><span>Today Logan is a happy five year old boy and so full of life. He is currently in preschool and preparing to embark on his new journey in kindergarten next fall. A huge milestone for a little boy who has endured numerous heart surgeries and other procedures. We have watched him overcome so much and struggle through many complications along the way. Logan’s heart story is far from over though and he will need more heart surgeries in</span></span></p><div style="text-align: center; "></div><p class="MsoNormal" style="text-align: center;"><span style="color: rgb(34, 34, 34); "><span> the future since his homograft will not grow with him. He currently is being monitored by his cardiologist for a few little issues and had a loop monitor implanted last year to try and determine some unexplained episodes he was experiencing.<o:p></o:p></span></span></p> <p class="MsoNormal"><span style="color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span style="color: rgb(34, 34, 34); "><span><span>We have learned so much in the past five years. A lot about life and much more about HOPE! Although we cannot foresee the future for our son we have the faith and belief that all things are possible.</span><span><o:p></o:p></span></span></span></p><div style="text-align: center; "><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7CTmSe8dd2l9JAUKiW-2DKCScA5q0fC2EA8HXk2-J_dGRpz9faKWZm_dKCopIK-a0S4RE2WDrl8fubX_v4RULuEAoeBcdn5p3onAwnUJ5LUTx7UNQYNOh6pHGPdy1UL0VU3x-qviouZA/s320/Fall+2011+605.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706881989752266930" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 214px; height: 320px; " /></div><div></div><p class="MsoNormal"><span style="font-family: Arial, sans-serif; color: rgb(34, 34, 34); "><span><o:p></o:p></span></span></p> <p class="MsoNormal"><span style="font-family: Arial, sans-serif; color: rgb(34, 34, 34); "><span> <o:p></o:p></span></span></p> <p class="MsoNormal" style="text-align: center;"><span><span style="color: rgb(34, 34, 34); ">You can follow our journey and learn more about Logan’s story by visiting our blog at </span></span><span style="color: rgb(34, 34, 34); "><a href="http://www.whenlifehandsyouabrokenheart.blogspot.com/" target="_blank"><span style="color: rgb(17, 85, 204); "><span>www.whenlifehandsyouabrokenheart.blogspot.com</span></span></a><span style="font-family: Arial, sans-serif; "><o:p></o:p></span></span></p><p></p><p></p></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><span><br /></span></div><div style="text-align: center;"><span><span><b><i><br /></i></b></span></span></div><div style="text-align: center;"><span><span><b><i>**Congenital Heart Defects happen 1 in 100 babies born... that 1 in 100 can be ANYONE... CHDs DO NOT discrimate... PLEASE BE AWARE!! Help SAVE LIVES... as that life may be YOU or YOUR CHILD!!** </i></b></span><a href="http://www.cdc.gov/ncbddd/pediatricgenetics/documents/CCHD_one_pager.pdf" style="text-align: left; ">http://www.cdc.gov/ncbddd/pediatricgenetics/documents/CCHD_one_pager.pdf</a></span></div><div><br /></div><span style="font-family:verdana;"><div style="text-align: center;"><br /></div><div style="text-align: center;">~~<a href="http://www.mylivesignature.com/" target="_blank"><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a>~~</div></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-3108297867290059002012-02-07T19:38:00.000-08:002012-02-07T20:04:30.791-08:00Feb. 7th... The Start of Congenital Heart Defect Awareness Week<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ_1wXyHvqdT3O1yrm6CJ0JF4kOs9ZJdKOQYMt6a8LdIeElSopBiXq1HOzxfuO24KElRjzs7ybcvYZ1RbeO6wtcT9QULw5ZYwCYf6gn4Mvc9VJLo2gmi_FLUolgvBPH1bVQ6UgKwq1E8s/s1600/CHD1in100.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ_1wXyHvqdT3O1yrm6CJ0JF4kOs9ZJdKOQYMt6a8LdIeElSopBiXq1HOzxfuO24KElRjzs7ybcvYZ1RbeO6wtcT9QULw5ZYwCYf6gn4Mvc9VJLo2gmi_FLUolgvBPH1bVQ6UgKwq1E8s/s400/CHD1in100.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5706609126499152930" /></a><div style="text-align: left;"><br /></div><div style="text-align: center;">Today... February 7th... is the start of <b>National Congenital Heart Defect or CHD Awareness Week</b>!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">So for those who may not know what a CHD is... here are some<b> Facts</b> for you:</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-Congenital Heart Defects are the World's Number ONE birth defect and birth defect killer!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-About 1 in 100 babies will be born with a CHD and 4,000 in the U.S Alone will not see their first birthday</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-There are about 1 Million CHD Adults and 800,000 CHD babies/kids in the U.S alone</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-There are about 40 CHDs and NO CURE for any of them!... they range for mild to severe</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-About 50% of CHDers will need at least ONE invasive surgery in their lifetime!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-Inpatient surgery for CHDs exceeds 2.2 Billion dollars a year!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-CHDs Kill more kids than all forms of Childhood Cancer combined!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-Only 1 penny of every dollar donated to Heart Disease goes to CHD research!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">BUT THERE IS HOPE!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-Over 50% of CHDers are Adults!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-8 out of 10... or about 85% of CHDers WILL make it to Adulthood!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">-The earlier a CHD is detected the better the outcome "can" be!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">-I'm 1 in 100!! </div><div style="text-align: center;">-I was not diagnosed till 11 weeks old and dying.</div><div style="text-align: center;">-I have one of the severe Congenital Heart Defects.... Tricuspid Atresia, Hypoplastic Right Ventricle or "half a working heart"/single ventricle repair</div><div style="text-align: center;">-My CHD is one of seven that are considered Critical CHDs that 9 out of 10 times can be detected by a simple Pulse Ox... which is a simple non-invasive and cheap test... it is like a bandaid with a red light that tests how much oxygen is in ones blood.</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><b>BE AWARE!!</b></div><div style="text-align: center;"><br /></div><div style="text-align: center;"> **<b>THREE GREAT LINKS</b>:<a href="http://pulseoxadvocacy.com/">http://pulseoxadvocacy.com/</a> , </div><div style="text-align: center;"><a href="http://www.cdc.gov/ncbddd/pediatricgenetics/documents/CCHD_one_pager.pdf">http://www.cdc.gov/ncbddd/pediatricgenetics/documents/CCHD_one_pager.pdf</a>,</div><div style="text-align: center;"><a href="http://www.childrensheartfoundation.org/about-chf/fact-sheets" style="color: rgb(97, 49, 189); font-family: 'Trebuchet MS', Trebuchet, sans-serif; line-height: 25px; background-color: rgb(231, 183, 255); ">http://www.childrensheartfoundation.org/about-chf/fact-sheets</a> **</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Here is my CHD Journey in Montage Form (or you can read my CHD journey here:<a href="http://laurensheart.blogspot.com/2009/11/my-chd-journey.html">http://laurensheart.blogspot.com/2009/11/my-chd-journey.html</a>)</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><div><div><embed src="http://www.onetruemedia.com/share_view_player?p=98bec4b7f6c0fc2cac50af" quality="high" scale="noscale" width="408" height="382" wmode="transparent" name="FLVPlayer" salign="LT" flashvars="&p=98bec4b7f6c0fc2cac50af&skin_id=701&host=http://www.onetruemedia.com" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer"></embed><div style="margin:0px;font:12px/13px verdana,arial,sans-serif;line-height:20px;padding-bottom:15px;width:408px;text-align:center;"><a href="http://www.onetruemedia.com/landing?&utm_source=emplay&utm_medium=txt5" target="_blank" style="text-decoration:none;">Make a video - it's fun, easy and free!<br /><span style="text-decoration:underline;">www.onetruemedia.com</span></a></div></div></div></div><div style="text-align: center;"><br /></div><span style="font-family:verdana;"><div style="text-align: center;"><a href="http://www.mylivesignature.com/" target="_blank"><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-21053006165376918172012-02-05T14:52:00.000-08:002012-02-05T15:05:27.642-08:00First Official Post of 2012!!<div style="text-align: center;">Wow it has been a while!</div><div> <p class="MsoNormal" style="text-align: center;">I really need to start updating more!</p></div><div><div style="text-align: center;">So much news to share… Where to start?!!</div> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">I’ll start with the BEST most AWESOME two pieces of news…</p> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">1.) I’m MARRIED!! Chris and I got married on December 21<sup>st</sup>, 2011. It was just a small courthouse wedding, but still wonderful. Below are two pictures from our wedding. We do not have rings yet either, but we will get those in time. It’s the marriage and the love that counts!! Chris and I already celebrated our one month wedding anniversary this past weekend… we went out to dinner, the just hung out enjoying each other’s company. <span style="font-family: Wingdings; ">J</span> We had a stressful one month (you’ll know why soon… hang tight), but we made it! Love Chris SO SO much!!</p><p class="MsoNormal" style="text-align: center;"><b>Our Wedding, Dec. 21, 2011:</b></p><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-biabk1bYLmjg5g1GjJBnkm9Y2mbv34Z2XCtvyi6rxQMcsmbOEs3KtqpQrdHKuueKcajy41KwRXtd1oJumLPF9elZUNjGehDH_2WTCzePMJQei-lKKOpUonHN-XKr3hdUoqm2uLmOJM0/s320/OurWedding1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5705789190769465794" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 215px; " /></div><div style="text-align: center;"><i><span >My dad is the one looking at us in the background. :)</span></i></div><div style="text-align: center;"><i><span ><br /></span></i></div><div></div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOdc70zYfSS57nI3vCUhM-Q9lpwLr7f5mEbzQpiXepznV-JAinqnWEcaf3j49zkohazfdACiXuoo3MXjQBtD2RF_f-fcin4mQe0aAytIhQfWkM2W6a47arMINQt4Y5jvDuW2jUxbibRfE/s320/OurWedding3.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5705789135701485986" style="color: rgb(0, 0, 238); text-decoration: underline; display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 233px; height: 320px; " /></div><div><div style="text-align: center;"><span><u><br /></u></span></div> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">2) I graduated college!!! I now have a much hard earned Bachelor’s degree in Psychology!! My last day of college was December 22<sup>nd</sup>, 2011. Yes, I had TWO BIG events happen back to back!! I’m SO VERY proud of myself!! For someone born with only “half a heart” and was not promised anything… my parents always hoped and prayed I’d grow up to be able to go graduate college and get married one day… and I did!! My parents could not be more proud!! I’m SO VERY grateful and blessed!!</p> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">**In other Stressful news!... I’m living in Northern California again (That is exciting news)!! Chris got a job, which is awesome news! We packed up and moved the week after graduating college and getting married (Yes Chris graduated college when I did)… that was the VERY STRESSFUL part!! But we made it!! We have been in our new apartment for 3 over three weeks now!! We did moving cubes for all of our stuff, and then drove to California. Because of the bad winter weather in the North/Mountains, we had to take the Southern route because I cannot stay more than about 24-48hours in very high mountains like Wyoming without oxygen and since I had none with me as I don’t ever need it regularly, we took the safer route… it was much longer though.</p> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;"><b>Health wise and heart wise:</b> I have only gotten one bad cold this winter, so that is good news! Heartwise, I’m still have some heart rate issues, usually low heart rate… but I’ve had 2 breath through episodes of tachycardia (fast heart rate) just last week, it had been a long time since I’ve had a breath through. I’m not suppose to have any episodes as I’m on medication to prevent it, but breath through episodes can happen. I still can get some weird beats on and off too. For the most part I’ve been fine. I never got answers I wanted from the 30 day heart monitor I wore back this past September. The official results were this from the nurse prac “nothing serious going on as that is what your cardio said”… and that was it… WHAT?!?! I was not happy. Since moving cross country, I had to change my heart care… I have a new Cardiologist at Stanford… he is a pediatric Cardiologist who also specializes in Adults with CHDs. AND my FIRST Cardio who Ihad the first 22yrs of my life knows who he is!! BIG PLUS!! My first Cardio appointment with him is April 19<sup>th</sup>… he has looked at my medical records and wants an echo and stress test. I have lots of questions for him and I hope to get some answers. I have my fingers crossed and keeping Hope. I continue to live my life to the fullest I can. I recently hit a milestone for someone with “half a heart”… I did my FIRST BIG grocery shopping trip ALL BY MYSELF!!! I was SUPER proud of myself and I’ve been doing the grocery shopping by myself for a few weeks now!! <span style="font-family: Wingdings; ">J</span></p> <p class="MsoNormal" style="text-align: center;"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Well that is it for right now. </p><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibojvpCOcW6hFIf6R5Ne_sFIrl3OFpx_4xnLRCtdpEfUf72Va4h1t0qppzS4tDlN4aP5er2YBvHl31RWWyVt9_wahNasNqwpxhVBSe11dbmiyp3lAdAoEn-j-WS4YKFePfVbjDPaL6OdY/s200/CHDsurvivor.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5705789045326817794" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; cursor: pointer; width: 200px; height: 177px; " /></div><p class="MsoNormal" style="text-align: center;">National Congenital Heart Defect Awareness Week is coming up… Feb. 7-14… so I will be doing some CHD posts including sharing some CHD stories. So stay tuned!!</p></div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><span style="font-family:verdana;"><div style="text-align: center;">~ <3 ~<a href="http://www.mylivesignature.com/" target="_blank"><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-33241631545907556242012-01-25T23:11:00.000-08:002012-01-25T23:13:23.487-08:00It Has Been Awhile...<div style="text-align: center;">Sorry it has been awhile... things have been busy and stressful. Hang tight... new blog post to come soon!</div><div><br /></div><div><br /></div><span style="font-family:verdana;"><div style="text-align: center;"><a href="http://www.mylivesignature.com/" target="_blank"><img style="border-right-width: 0px; border-right-style: initial; border-right-color: initial; border-top-width: 0px; border-top-style: initial; border-top-color: initial; background-image: none; background-attachment: scroll; background-origin: initial; background-clip: initial; border-left-width: 0px; border-left-style: initial; border-left-color: initial; border-bottom-width: 0px; border-bottom-style: initial; border-bottom-color: initial; background-position: 0% 0%; background-repeat: repeat repeat; " src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-47226588701306756882011-12-17T21:34:00.002-08:002011-12-17T21:52:09.833-08:00Snippets from the Busy Life of This Adult CHDer...<center> AH it has been SO long since my last real update!! Life has been SO busy (good and bad, I guess)!<br /><br />First off... I've reached 100 Followers to my blog! WOW! Thanks to those who follow it even though I've done a horrible job keeping up with it lately... when things calm done in a few months, I will have more time.<br /><br />Now on to SNIPPETS from what has been going on in my busy life lately:<br /><br />- I got Pre-limanary results from the 30 day Heart Monitor I wore back in September... I get low heart rate at night and can get out of rhythm every so often (like a few times a week)... but they think it is nothing to worry about... still waiting for "official" results (upset it has taken SO LONG). My heart has been behaving better lately... so that is good considering the stress I've had... <br /><br />- We had a WONDERFUL and relaxing Thanksgiving with Chris' mom!! And I got to meet another amazing CHDer and their amazing mom! <br /><br />- I will be a College Graduate as of December 22nd!!! WOOHOO!!! :) <br /><br />- I'm getting legally married to Chris NEXT WEEK on December 21st... it is just a SMALL Courthouse thing, but we plan on having a BIG wedding/reception in about 18months when we have the money. But it is the LOVE, Commitment, and marriage that counts! :)<br /><br />- I'm MOVING back to Northern California in less than 2 weeks... this time permanently (for now anyways)... Chris got a job. I will be transferring my Cardiac Care from Michigan to Norther California... will be seen at Standford Children's.<br /><br />That wraps up the MAIN points of my life right now... LOTS going on next week including Christmas!!<br /><br />A NEW Chapter in my life will soon begin!! I'm SO grateful to be able to live a life despite the challenges and hardships (health wise and personal issues)!! I may have "Half a Heart" but I do not have "Half a Life".<br /><br />Sending thoughts, prayers, and *heart hugs* to all!!<br /><br />Happy Holidays and Merry Christmas!!<br /><br />AND STAY TUNED... more updates to come... <br /><br />I will end with a new picture of Chris and I.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtYujwaoc5BkCL9AI4tstSYo_96CHw6GdquDurk-YfBrjDZD3bFxcx9uCqK9CSyE5WYs_wWlBRguY_hJCmDOD1yKRQN3H6Mr-UjX_ygYPhWIDZFp8nkOYHxa6K8Pg8s0dNhyphenhyphentCeqPE2zw/s1600/awww.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 283px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtYujwaoc5BkCL9AI4tstSYo_96CHw6GdquDurk-YfBrjDZD3bFxcx9uCqK9CSyE5WYs_wWlBRguY_hJCmDOD1yKRQN3H6Mr-UjX_ygYPhWIDZFp8nkOYHxa6K8Pg8s0dNhyphenhyphentCeqPE2zw/s320/awww.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5687341743134596386" /></a><br /><br /><a href="http://www.mylivesignature.com/" target="_blank"><span style="font-family:verdana;"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></span></a></center>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-8686039988792019002011-12-05T18:00:00.000-08:002011-12-05T18:02:04.404-08:00I'm WAYYY Behind!!!!<div>I'm really behind on updating. LOTS have been going on! I plan on updating after finals aka after finishing college which is 2 weeks away. Stay tuned! Lots to share! </div><div><br /></div><span style="font-family:verdana;"><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-67916111523156602152011-10-13T15:53:00.001-07:002011-10-13T16:06:11.136-07:00Mid October Already?!?! Random Stuff and Heart Stuff<div style="text-align: center;">Hello Everyone!</div><div> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">I know it has been a long time since my last update… over a month almost two months!! So what has happened since my birthday?!?! Here is a small update…</p><div style="text-align: center;">My 24<sup>th</sup> Birthday was a nice, quiet, and enjoyable day. Chris took my out for dinner and he had bought me a Ben & Jerry’s ice cream cake (that had no cake in it HA!). Chris let me pick where I wanted to eat and I choose Pizza Papalis which was yummy! Then we got home and had ice cream cake… it was one of the best ice cream cakes I ever had! We ate the WHOLE thing in 4 days! HA! Since my dad lives with us at the moment, he got to enjoy left over pizza that we brought home and some ice cream cake. Chris and my dad sang Happy Birthday to me! :) I got some nice phone calls from my mom and grandparents… and the day before I had gotten to hang out with my awesome little brother. I also received SO many Happy Birthday messages from friends and the amazing CHD community. I felt very loved! Thank you from the bottom of my mended heart!</div> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Here is a picture of me with my Ben & Jerry’s cake on my 24<sup>th </sup>Birthday (Aug 25):</p></div><div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRBpsWJ7cwrOWNreEyImIFGjeFYKyFMcS_2-x2tnQiVJQeSE2onJGFP8TiZ9Eqgbk1FgPxZ6EV1Xc_2Qc_AvvCY5gydXgzY5kLtygFcQ42JuUwmZC6g_fHjeECMoiP1arX5Ka97r12mXQ/s320/IMG_0551.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663115113751425010" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></div><div></div> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><b><br /></b></p><p class="MsoNormal" style="text-align: center;"><b>In other news:</b></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-My little brother, Aaron now lives with my mom in Texas. I miss that kid like crazy! </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-Labor Day weekend Chris and I drove down to Ohio to spen</p><p class="MsoNormal" style="text-align: center;">d time with Chris’ mom… we also got to spend time with his older brother, niece, and nephew of a little too. The day we left Ohio Chris and I met an amazing Heart mom and her amazing 2yr old CHD warrior (HLHS… the opposite of me). It was a very special visit that I will never forget! </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-My last college semester started on Sept. 7<sup>th</sup>! I’ve been trying hard to focus and get everything done…. It’s hard though because all I can think of is “I gradua</p><p class="MsoNormal" style="text-align: center;">te college in December!”. I’m so proud of myself and excited to hit this milestone especially being a single ventricle CHDer. College has been keeping me very busy along with other things going on too. I try to take some time to relax.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-I got to meet my dad’s side of the family a few weekends ago for the first time in over 3yrs. It was so nice to get to see them. I had a nice time.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-Last weekend I got to meet two amazing CHD Moms and th</p><p class="MsoNormal" style="text-align: center;">eir CHD warriors. I really enjoyed meeting them! I love meeting CHD families!</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">-We are only going to be in Michigan another 2 1/2 months before moving back to California, so I’ve been trying to make plans with some people and family so I can see them before I leave. We will be busy packing around Christmas time… oh boy. Chris and I st</p><p class="MsoNormal" style="text-align: center;">ill haven’t figured out how we are going to move everything… as </p><p class="MsoNormal" style="text-align: center;">we have a LOT of stuff this time. Also, I’m moving my heart care to Standford Children’s Hospital when we move to California. I’m nervous and excited about moving and new doctors, but it will all work out. </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Heart wise: I kept getting on and off palpitations/weird heart beats that came with discomfort and/or chest pain. I’ve been getting these on and off for over a year, but they seem to come more frequent. I had a 24hr Holter put on me in June, but nothing was picked up. So I talked to my Cardiologist’s nurse practitioner and I received a 30day Life Watch Monitor in the mail. I wore it for 3 weeks. A Life Watch Monitor is like a Holter and a Even Monitor all into one… it has three leads & wires that attach to the chest… then it has a Blackberry cell phone that connects with the monitor and the Life Watch Center… though the monitor runs everyday 24/7 (and yes I could take it off to take a shower), I would send them text messages when I was having symptoms so that a red flag is marked during that period of time during monitoring. I took off the monitor last week and sent it back this week. My Cardiologist’s nurse practitioner said it will take a week or two to review everything. I will update when I know more.</p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Here is a picture of me with the Life Watch Monitor on back when I first got it:</p><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjneK4w_Maprk27TEfjRkW8JbN9WbOE9b5y0FnMaSB9L5Rp-PsG4ceULPuFZiVQFZi4M2DJV5Uk7LvCvqwOinyvcrPQv-FI37HA2r6xRi0nxQHMFtyM48HYR2EXH8P8RxrvbEfy3-szoIY/s320/IMG_0569.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5663114927838774466" style="display: block; margin-top: 0px; margin-right: auto; margin-bottom: 10px; margin-left: auto; text-align: center; cursor: pointer; width: 320px; height: 240px; " /></div><div><div style="text-align: center;"><br /></div> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Alright, that is it for now. I hope to update soon with more news. </p> <p class="MsoNormal"><o:p> </o:p></p> <p class="MsoNormal" style="text-align: center;">Take care! Sending thoughts and prayers to many!</p><p class="MsoNormal" style="text-align: center;">*Heart Hugs* sent to all! <3</p></div><div style="text-align: center;"><br /></div><div style="text-align: center;">With Lots of Hope, Love, and Faith,</div><span style="font-family:verdana;"><div style="text-align: center;"><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-66857813342309139812011-08-25T08:20:00.000-07:002011-08-25T08:21:21.098-07:00Today I'm 24<div><div style="text-align: center;">Today is my Birthday. I’m now 24. 24 years old... where has time gone?</div><div style="text-align: center;"> </div><div style="text-align: center;">The past weeks have not been easy. I’ve been stressed and emotional. Been dealing with school and other personal issues, but I’m hanging in there and I know that everything will work out as it should in the end.</div><div style="text-align: center;"> </div><div style="text-align: center;">Every birthday since I have been older, though I’m not old, I’ve looked back at everything I’ve overcome. I remember the good times, the bad times, trails I’ve gotten through, and the triumphs. I have been through more in my short 24 years than most people will ever go through in their lifetime. I can say the things I’ve been through, my experiences especially living with a life threatening Congenital Heart Defect or “Half a Heart” has had a big impact on the person I am today. I’m very proud of the person I am.</div><div style="text-align: center;"> </div><div style="text-align: center;">Today is another milestone. Today is a day to remember the past, celebrate the present, and look to the future. I don’t know what my future holds, but I will take one day at a time (I say this a lot, but it's true). I know it will include more challenges especially medically, but I know it will include great things too. I graduate college in December and I plan on marrying Chris in the near future… I’m using my knowledge of what it’s like to be in the hospital, my degree in Psychology, and my love for children to become a Child Life Specialist at a Children’s Hospital. I have so much to look forward to despite my not so easy life living with a chronic illness.</div><div style="text-align: center;"> </div><div style="text-align: center;">I will never stop spreading CHD Awareness, telling my story, spreading Hope and inspiration, and being a support to others. From doing these things I receive priceless gifts of meeting amazing people, kindness, support, hope, inspiration, and so much more.</div><div style="text-align: center;"> </div><div style="text-align: center;">Thank you for everyone that has been in my life in some way, you have played a part in the person I am today. To my personal heroes: my parents, my doctors, and my surgeons who are the reason I’m here today… there are no words to express how thankful I am to them… I much I love them and how much I’m grateful.</div><div style="text-align: center;"> </div><div style="text-align: center;">Though things have not been easy (health wise, family, school, etc), I’m blessed and super grateful for everyone and everything.</div><div style="text-align: center;"> </div><div style="text-align: center;">Today I’m 24. Today is a special day for me.</div><div style="text-align: center;">
<br /></div><div style="text-align: center;"><b>Me on my 1st Birthday</b></div><div style="text-align: center;"><a href="http://s50.photobucket.com/albums/f327/giggle99/?action=view&current=mymomandI.jpg" target="_blank"><img src="http://i50.photobucket.com/albums/f327/giggle99/mymomandI.jpg" border="0" alt="Photobucket" /></a></div><div style="text-align: center;">
<br /></div><div style="text-align: center;"><b>Me back in June</b></div><div style="text-align: center;"><a href="http://s50.photobucket.com/albums/f327/giggle99/?action=view&current=117.jpg" target="_blank"><img src="http://i50.photobucket.com/albums/f327/giggle99/117.jpg" border="0" alt="Photobucket" /></a></div></div><div style="text-align: center;">
<br /></div><span style="font-family:verdana;"><div style="text-align: center;"><span class="Apple-style-span" >♥</span><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-66694505793136402532011-07-25T17:41:00.000-07:002011-07-25T17:44:09.965-07:00Liver MRI Results, Holter Results, Another Appt<div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">Hello Everyone!</p><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">I had my Liver MRI July 15. The MRI itself went well and was a lot shorter then my Cardiac MRI that I had last month, I did have to wait awhile to go back for the test as the office was so busy that they were running a bit behind, but that is ok. After the MRI Chris took me out for some yummy pizza, so we made the best out of the day.</p><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">Last Monday I got a phone call from my Cardiologist’s office with my Liver MRI results and my 24hr Holter results. It had been over a month since I had worn the 24hr Holter monitor so I was glad they finally had the results of that in as well. I’ll start with my Holter results: All is well. I have no abnormal heart rhythms, a-fib, etc. which is great! I still have my minor heart rate issues, but they haven’t gotten worse and I’m still on my same dose of beta-blockers (my heart rate medication) that I have been on since I got the issues 6 years ago. So I was glad that everything is stable right now. As for my liver... it looks “ok” for a Single Ventricle Fontan patient with an older Fontan. My liver is enlarged which is to be expected, but my liver function isn’t what they were exactly hoping for. With my pretty good stable Heart function they were expecting pretty good liver function as that’s usually how it goes… not me. My liver is “high” normal for someone who is an older Single Ventricle Fontan doing well Heart wise. So, my liver will have to be kept a very close eye on from now on and they said if my liver levels continue to rise, then they we’ll think about options… which the first step would be medication. BUT they said to keep living and not to worry about it right now as there is nothing I can do about it, it’s just the way my liver is reacting to my Fontan in MY personal case and that my liver is OK and acceptable for right now… it could stay this way for years or one year, who knows, but I will continue to live and not worry about it.</p><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">In other news, I got to meet a Heart Mom while getting my Liver MRI as she worked in that office. It was so nice to finally see another person I have “met” through the online CHD community face to face.</p><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">Also, my Cardiologist signed Handicap parking papers. So, now I have a Handicap parking placecard for our (Chris’) car. This will help in really hot weather and in really cold weather or when I have to park all the way out of the way on my college campus. I may be doing well, but in certain weather and walking long distances is not very easy for me, so this will be helpful. This to me does not label myself disabled, this just means I have some limitations and I care about my Heart health.</p><p class="MsoNormal" style="text-align: center;margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); ">Other than all that, life continues to be busy with college, family, keeping up the apartment, etc. We do get some time to relax now which is nice. There hasn’t been anything new or exciting lately, most stressful than anything. <span style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; font-style: inherit; font-size: 14px; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; vertical-align: baseline; color: rgb(62, 55, 51); "> </span>I do have a doctor’s appointment at my Primary doctor’s on Friday to get some booster shots (Tetanus & Whooping Cough) and to get evaluated for Asthma… hopefully they give me a referral to a Pulmonologist to see if I do indeed have Asthma. A few years ago after a stress test I was told my old Cardiologist (of 22yrs) that I may have minor Asthma, but I had no symptoms so never got tested for it… well for over a year I’ve had symptoms and they keep getting slightly worse… I hit most of the Asthma symptoms, so I’m hoping to get an official diagnose and medication… if not then I’ll be tested for other things to find out what is going on. I know it’s not my heart as I just had a Cardiologist appointment and all was good. I’ll keep everyone posted.</p></span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span></div></span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "> Even though things haven’t been easy, I shouldn't complain as I’m doing pretty well and do have many things to be grateful for… I am blessed. Sending thoughts, prayers, and **Heart Hugs** to all! My Heart/CHD family means SO very much to me!</span><p class="MsoNormal" style="margin-top: 1em; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; border-top-width: 0px; border-right-width: 0px; border-bottom-width: 0px; border-left-width: 0px; border-style: initial; border-color: initial; vertical-align: baseline; "></p><div style="text-align: center;"><span class="Apple-style-span" ><span class="Apple-style-span" style="font-size: 14px; line-height: 18px;"><br /></span></span></div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "> With Hope, Love, and Faith,</span><p></p></div><div style="text-align: center;"><span class="Apple-style-span" style="font-family: verdana; "><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-85973644263013792192011-07-13T13:23:00.000-07:002011-07-13T13:38:50.922-07:00Quick Random Update<div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">Thought I would drop in and just give a brief update on what's going on in my crazy life haha. </span></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">My 2nd Summer term of classes started last week. I have two classes instead of one like the first half of the summer. I'm in school most of the day Tuesday and Thursday (11:30-2:20 & 6:10-9) which can get me tired, but I mange pretty well and I'm proud of myself for it! I graduate in December and I can not wait! Woohoo! :)<br /><br />I sat down and thought about what I want do as a career after college for a long time over a few day period it was in my head. I think I'm going to try my hand at being a Child Life Specialist. I know what it's like to be in and out of the hospital, so I think I would do well at this. This will mean that after college I need to do 100 volunteer hours, then a 680 hour Internship, & lastly pass a test... all this to be certified. I hope I can do it. I'm going to give it my best effort and either way the experience will mean a LOT!<br /><br />Life continues to keep me busy with ups and downs, but I'm doing pretty well. Keeping my head up and looking at positives. I am blessed and grateful for so many things.<br /><br /></span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">I have my Liver/Abdominal MRI this Friday. I can't eat or drink 4hrs before... so that means I need to get up at 7am (can't eat or drink after 8am) to eat and brush my teeth. I won't know the results that day, but I will post a quick update on how the MRI went. I also have not gotten my 24hr Holter results yet even thought it's been almost 4 weeks, but they told me it can take up to 8 weeks for the results... so I will post when I have them. The best part of this MRI is a Heart Mom I've known online for awhile works in the MRI department that I'm going to this time around, so we will finally meet! :) And Chris is taking me out to eat after the MRI. So I'm going to make the best out of it!</span></div><div><span class="Apple-style-span" ><span class="Apple-style-span" style="font-size: 11px; line-height: 14px;"><br /></span></span></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">That's about it for now. What kinds stuff do you want me to post about? Let me know... I could always use a topic. I wish I wrote funny posts, but maybe I need help in that area. I need to think of funny stuff</span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">.</span></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span></div><div><span class="Apple-style-span" ><span class="Apple-style-span" style="font-size: 14px; line-height: 18px;">**Oh almost forgot** <b>Adult CHDers who had the Fontan AND CHD Parents whose child has had the Fontan</b>, please if you have 10mins click on the link below and do this survey. The University of Michigan, Mott's Children's Hospital is doing this Anonymous research survey on anyone of any age who has had the Fontan surgery. This survey could collect great information in how to better the treatment for who, like me, have had the Fontan surgery. Thanks! Link to the survey: </span></span><a href="https://umichumhs.qualtrics.com/SE/?SID=SV_8GHoFYmVjkHb4I4">https://umichumhs.qualtrics.com/SE/?SID=SV_8GHoFYmVjkHb4I4</a></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">Thanks so much for all the prayers and support! Sending prayers & **Heart Hugs** to all!</span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; ">With Lots of Hope, Love, and Faith,</span><span class="Apple-style-span" style="color: rgb(62, 55, 51); font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 18px; "><br /></span></div><div></div><div><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-33517726028529853342011-07-01T11:11:00.000-07:002011-07-01T14:59:07.729-07:00A Quick Bunched Up Update... Another MRI...<div style="text-align: center;">Hello Everyone!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Happy July! Woah can't believe it's already July! I will be 24 next month... where did the year go?! Geez... time slow down a little! I've been super busy still, but wanted to write a quick update... there is a bunch of stuff to quickly talk about, so I'm sorry if this update is all over the place.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I finished my first summer class on Monday! Woohoo! I did well! :) </div><div style="text-align: center;">I start my other two summer classes on Tuesday... if one wasn't busy enough, I will have two... but need to get that college degree in December. I keep telling myself only 7 more classes away from a college diploma now! :) So excited! I decided I want to be a Pediatric Social Worker or a Child Life Specialist as a career... hopefully that works out... I think I would be good at both, just have to see which one I can get. Fingers crossed! :)</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Last Sunday I saw my mom's side of the family for my Grandma and </div><div style="text-align: center;">Uncle's birthday... it was so nice. I got to see my niece again! Oh my Lily (my niece) keeps growing! :) Here is a picture of here and I... not a great one as she looked away haha. Oh got a new haircut last week, so that is a good picture of my new do. </div><div style="text-align: center;"><br /></div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgec0Rx9oNZAvgDR4dfzZdwEWxw1fa7FrtmOuTMKq0DgoEQ76sRBA5zcB-o3sIKoP8co0w-i4XdSbRDwClzi1Vv7_cawj3hgP8VzJAXAZQLZv1rjz95vpSKQjI3JSBH8AQhhjPRXBBjxcA/s320/009.JPG" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 241px; height: 320px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5624456735581113746" /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">So, I tried my hand at making sem-homemade cinnamon rolls last weekend. I had dark brown sugar, cinnamon surgar, butter, and pizza dough balls... they smelled great and looked great (see below picture), but they tasted nasty haha. Not sure what I did wrong, but I'm almost certain it's the pizza dough... I've learned to never use pizza dough for cinnamon rolls... it was worth a shot though. I had fun even though it was an epic fail ha! Now, I need to think of my next food experiment haha. ;)</div><div style="text-align: center;"><br /></div><div style="text-align: center;"><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfAH2GLxTCM7e2y_bBxeP8evJMxbEFcDUsZJLqP74Id1VyH0GaqFG6NcipxMnSeTPKj6DrIY3mUWC0Ya_7j8pr5e40SQjc0MbABbHAMdVX5VbSsoZTfksuQqq6tcyascPJS9yYS1UJEfE/s320/004.JPG" style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" border="0" alt="" id="BLOGGER_PHOTO_ID_5624456615236894418" /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">**Health News: So in my title I say Another MRI... let me explain the best I can. I had gotten a call 2 weeks ago about my lab/blood results. My Cardiologist's Nurse Practioner said everything looked fine, but I asked to get a copy of my results sent to me so I have a record of them (I try to get a copy of all my medical records). A few days later in the mail I get my lab/blood results and I look over it, then decide to compare with last years. My new Cardio has never seen last years as I had them done before I first met him... that's why I wanted to compare. I noticed that my Bilirubin (liver function levels) were slightly high last year, but that is Normal for most CHDers especially Single Ventricles who had the Fontan like I did... but I noticed a big jump from last year to this year, not a huge jump but almost a point higher which "can" be concerning. So I called my Cardio's Nurse Pac... we ended up playing phone tag for a few days (hate that). I finally told her my concern and wanted her to ask my Cardio what numbers should I start being concerned... the nurse said she would ask and call back in a day or two. Well, I get a phone call 2 days later by one of my Cardio's secutaries wanting to schedule my Liver MRI.... UM WHAT?! She said "Oh I'm guessing you don't know..."... Well later that day my Cardio's Nurse Prac. calls me saying sorry for scaring me and not getting to me first. My Cardiologist had went to conference about a week ago... the topic of Fontan-ers (my second open heart) and livers were brought up... that even a slight jump in Bilirubin from year to year "can" be concerning and eventually effect my heart (which is going well). So, they the increase in my Bilirubin is high enough to be concerned to get a Liver MRI as a precaution... that way if there is anything it will be caught in time before it effects my good heart function. Makes total sense. So, on July 15 at I go back to the hospital for a Liver MRI (well it's called an Abdomen MRI). I'm hoping everything is ok and this is just going to be a baseline MRI for my Liver. </div><div style="text-align: center;"><br /></div><div style="text-align: center;"><br /></div><div style="text-align: center;">Alrighty, I have a busy busy weekend and week ahead of me. I hope everyone had a safe and wonderful 4th of July weekend! Sending thoughts, prayers, and **Heart Hugs** to all!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">With LOTS of <span class="Apple-style-span">Hope</span>, <span class="Apple-style-span">Love</span>, and <span class="Apple-style-span">Faith</span>,</div><span class="Apple-style-span" style="font-family: verdana; "> <span class="Apple-style-span">♥</span><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></span>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-3973772453586477753.post-54482736651643841972011-06-16T16:55:00.000-07:002011-06-16T21:28:47.217-07:00My 1st Ever Cardiac MRI & Yearly Cardiologist Appt Results<div style="text-align: center;">Ok Where to start...</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I got up at 6:30am, but considering I went to bed a little over midnight and had a </div><div style="text-align: center;">hard time sleeping... I didn't get much sleep... I was nervous.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">We got to the Medical Center for my Cardiac MRI at 8am. I filled out papers and all</div><div style="text-align: center;">that good stuff. Went back, got into a gown, then got an IV... the nurse was nice and got it in on the </div><div style="text-align: center;">FIRST try (YAY!)... then had to wait about 15mins. Going into the MRI room was a bit</div><div style="text-align: center;">nerve racking... I got all hooked up and strapped in, than into the "tube" I went. The</div><div style="text-align: center;">tight space didn't bother me, it was the laying still for over an hour and the noise that</div><div style="text-align: center;">really got me... but I did it! WooHoo!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">After the Cardiac MRI we got a quick bite to eat... I was sore and tired, but I did eat something.</div><div style="text-align: center;">We then headed over to Mott's Children's Hospital, Pediatric Floor... got checked in then I was</div><div style="text-align: center;">called back.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">My Cardiologist came in... whom I've only had for two years (had to change Cardios from</div><div style="text-align: center;">the one I knew my whole life as he wasn't a Ped Cardio certified to take care of Adult</div><div style="text-align: center;">CHDers too and he wanted the best care for me). Dr. C came in then sat down and showed</div><div style="text-align: center;">me the MRI images of my heart. He explained I was looking at... what my heart is like</div><div style="text-align: center;">compared to a normal heart... all very interesting. Dr. C told me I'm "Stable"! An AWESOME</div><div style="text-align: center;">word us Complex CHDers and CHD parents want to hear! Now, he told me for a HRHS older</div><div style="text-align: center;">Fontan-er I'm "good" "stable"... what does that mean? Well, he told me this: an average</div><div style="text-align: center;">left ventricle in a normal heart has a gradient (I think that is the word he used) of 56-57...</div><div style="text-align: center;">that is just Average Minimum for a normal left ventricle... my gradient right now is about 47...</div><div style="text-align: center;">it has dropped since my Fontan 21yrs ago, so it's not "great" "stable", but "good" "stable" which</div><div style="text-align: center;">he said is still really good for me! Whew! **Gradient is just how your ventricle pumps...</div><div style="text-align: center;">mine works over time and doesn't have a good squeeze as a normal heart does because</div><div style="text-align: center;">I don't have a right ventricle.** He said once I get to about 35 then we will talk about doing</div><div style="text-align: center;">some sort of intervention... which will most likely be a Fontan Revision, but he said a Heart</div><div style="text-align: center;">Transplant isn't off the table... BUT he said do NOT worry about ANY of this right now!!</div><div style="text-align: center;">Just keep LIVING and doing EVERYTHING I can do, of course within reason.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Dr. C then listened to my heart and took my blood pressure... my blood pressure was a little</div><div style="text-align: center;">low, but he wasn't too concerned. I got an EKG... piece of cake. I had a 24hr Holter put on</div><div style="text-align: center;">as he wants to see how things are... especially my heart rate issues... he was thinking I "could" </div><div style="text-align: center;">get off my beta-blocker and see how I go without it depending on my Holter results, but he</div><div style="text-align: center;">says with my heart rate issues, it can be hard to balance... we'll see. I also go my yearly blood</div><div style="text-align: center;">draw and will get those results next week... I'm sure it will be fine.</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I go back for a Cardiology check-up in a year!! Woohoo!!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Dr. C said he sees Fontan-ers all the way into their 40s and still doing pretty well...</div><div style="text-align: center;">he thinks I "could" last another 10yrs before I may need something done. Great News! :)</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Thanks everyone for ALL your thoughts, prayers, support, and kind words... they all</div><div style="text-align: center;">TRULY mean a lot to me!! I don't know what I would do without my amazing Heart family!!</div><div style="text-align: center;">I'm speechless by all the love and support! Thank you, thank you, thank you!</div><div style="text-align: center;"><br /></div><div style="text-align: center;">I will keep on living my life to the fullest!!... Drs orders!! :)</div><div style="text-align: center;"><br /></div><div style="text-align: center;">Sending you all **Heart Hugs**!</div><div><br /></div><div><span class="Apple-style-span" style="font-family: verdana; "><a href="http://www.mylivesignature.com/" target="_blank"><img style="BORDER-RIGHT: 0px; BORDER-TOP: 0px; BACKGROUND: none transparent scroll repeat 0% 0%; BORDER-LEFT: 0px; BORDER-BOTTOM: 0px" src="http://signatures.mylivesignature.com/85735/giggle99/90efa68f43fd0404231cad01e2bfbc64.png" border="0" /></a></span></div>Laurenhttp://www.blogger.com/profile/16168976317111099445noreply@blogger.com