Tuesday, November 24, 2009

How Congenital Heart Defects Affect My Life...

This was written for the CHD blog carnival Adult Tricuspid Atresia Survivor, Steve, is hosting... The topic: "How CHD Affects My Life". So Here it goes...

CHD is my life; it is all I’ve ever known. I was born into this; I didn’t have a choice or say in the matter. I had to fight many times to live, but I survived; I’m here. From the time I wake up in the morning till the time I go to bed I have little reminders that I have a CHD, that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind.

When I wake, as I get dressed I always see those scars on my chest. During breakfast I take medication that helps my heart continue to be strong. While walking I sometimes have to stop, I get out of breathe, I think about it. When I get stressed, I get muscle spasms around my heart (was dignosised with these last year), it reminds me. Through out the day I get tired easily, again I think about it. At 7 O’clock on the dot every day my cell phone alarm goes off, time for my most important heart med, my beta-blocker. Before bed, I automatically take two baby aspirin with a snack, I have a quick of it. When I change into PJ’s, those scars make another appearance. As I lay in bed my chest can hurt, my heart is adjusting, it’s beating slow. I pray, I close my eyes, I never forget. My heart reminds me every day of my life, it affects my life, and it will always be a part of my life.

This CHD has lead to my anxiety disorder, has helped in my stubbornness, has helped me be blunt about things, has given me nightmares, has given me a hidden anger, and has helped me in my very emotional personality. All these negatives of me have been affected by my CHD and are now forever part of my life, BUT…

Though my CHD is a big part of me life and it affects every part of it in some way, I try not to let it define me or hold me back from achieving my dreams. This CHD, though has affected me in negative way throughout my life, it has also affected me in many positive ways too...

My CHD has taught me to be more understanding of people around me. It has taught me to not take life for granted and to love the people you care about with all your heart. It has taught me that family and close friends are the most important things in life. It has taught me to enjoy the simple things in life and to enjoy the small positives of everyday. It brought me together with so many wonderful and amazing people. It has given me a motivation to help others and to always have faith. Lastly, my CHD has affected my personality in the best way possible as it has helped shape my loving, caring, kind, sweet, inspirational, brave, and strong character.

My CHD will never go away, but I will make the very best of it (like I have been) and keep living my life to the fullest!!


With LOTS of Hope, Love, and Faith,

Saturday, November 21, 2009

20th Fontanniversary!!!

Today, 20 years ago…

My parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure. It had only been a month before during a heart catherization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery that was only about 10yrs old, still a fairly new operation. This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. A 50/50 chance is what the doctors bluntly told my parents, but my parents hung onto to positive 50%.


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My parents had a lot of faith in the doctors and God that I would come out ok. God had his plans, he wanted me to live. I’m happy to say that I was one of the fastest Fontan recoveries the hospital had seen back in the 80s, only one month in the hospital. It's an even faster recovery today; technology is awesome. As far as complications that I had from this surgery, other than me pulling out a chest tube (then them having to put it back in while my parents held me down as they didn’t have a enough nurses around at the time) and me being on a special diet, I didn't have any. Thanks to the founders of the Fontan Procedure, the doctors, my parents, and God I’m here today. The Fontan Procedure continues to save the lives of SO many CHDers… I’m also internally grateful for Mr. Fontan and his collegues for working hard to develop such a life saving surgery.


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I do have two small stories that my parents shared with me about my time at the hospital recovering from my Fontan:

My dad tells me that a week or two after surgery I had to start walking again to get the blood flowing and prevent blood clots. My mom didn’t want to do it as she couldn’t stand me in pain. My dad took the job. A nurse along with my dad would take me into the hallway and give me a walker. Then, my dad would hold my blanket in front of me. My dad would tell me to come get it and I would cry and take a few steps. Every time I’d get close to my blanket, my dad would pull it back. My dad said it was heartbreaking to see me so unhappy and in pain, but it had to be done. He knew for my own good and health I had to walk again.

My mom tells me about how I was put on a medium chain triglyceride diet. It was hard as I loved cookies and it was not allowed on that diet. Well, one day while my mom was sitting next to my hospital bed, I keep asking for a cookie. My mom’s heart broke. That night when she went home to be with my older brother and my dad stayed the night with me in the hospital my mom was determined to make me cookies. She bought medium-chain triglyceride oil and found a recipe. The cookies came out hard as a rock and tasted nasty.. So, she put a whole bottle of cinnamon in the mix the next time around. They were better, but still hard as a rock. My mom got the idea to wet a paper towel and wrap it around the cookie and heat it in the microwave. This made the cookie soft for a few minutes. When she got back to the hospital to see me, she heated one up and gave it to me. I took one bite then held it and smiled. My mom said I never took another bite, but held that cookie for dear life. She says the smile on my face was priceless and was worth every minute of trying to make me those cookies.

I was discharged from the hospital four days before Christmas in 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?


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My older Brother and Me on Dec. 25th, 1989... just 4 days from coming home from the hospital


Today I have been thankful and also thinking of the ones who never made it and those still fighting. They remind me of why I have to spread CHD awareness. They remind me to ALWAYS have Hope~Love~Faith!!! So… Here I am, 20yrs later and ever so happy to be here. I'm very blessed in so many ways. I have two amazing parents who have done SO SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them so VERY much!!! (You can see pics of me with my amazing parents on my left side bar).

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Me with my very loving and amazing boyfriend, Chris


“Thank You” ALL so VERY much for ALL the wonderful messages, e-mails, and much heard prayers!!! You guys really are amazing and are like my second family!!!
I continue to pray for SO many!!! Sending LOTS of WARM **Heart Hugs** to ALL of you!!!
May God Bless, Guide, and Comfort you on your journey!!!

With LOTS of Hope, Love, and Faith,

Thursday, November 19, 2009

The HeartFelt Blogger Award!!!

This morning while reading an update on one of my favorite Heart Mom's Blog, I found that she nominated me for the HeartFelt Blogger Award. Stefenie at When Life Hands You a Broken Heart... Create Hope gave me this wonderful award. Thank You SO much Stef, it really means a lot to me! I wish I could award this right back to you because your posts touch my heart!

The Heartfelt Blogger Award is awarded to the blogs that make us feel all comfy or warm inside when we read them.

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Here are the rules for this award...

1) Display the award logo
2) Nominate up to 9 blogs that make you feel comfy or warm inside
3) Link to your Nominees and leave a comment on their blog telling them about the award.
4) Link to the person whom you received the award

Those who make me feel comfy and warm inside, in no particular order are (Oh how I wish I could Nominate everyone, there are SO many blogs that make me all warm and fuzzy!):

1.) Michelle because I love reading about her Five Little Blessings especially her CHD warrior, Zachary, who is adorable.

2.) Amanda because I love reading about little Janelle, CHD warrior, who is very spunky. Amanda is also very sweet and I love talking with her.

3.) Baby Hope's Mom as she shares her precious daughter's difficult journey with HLHS which started just two months ago at her birth.

4.) Jessica as her posts are beautifully written full of emotion as she shares her new journey of living life without her fourth child, Ethin, an adorable HLHS warrior who earned his angel wings this summer.

5.) Mary as she is a heart mom to cutie Drew, who has started up a Michigan chapter of "It's My Heart" to raise CHD Awareness.

6.) Katie who shares all her families adventures including Heart Warrior daughter, Maddie, who is one spunky and cute little thing.

7.) Dawn as I enjoy reading all about her adorable CHD Warrior, Natalie, as well as all the funnies of her kids.


Oh how I wish I could choose all of the pages I read, but these are the ones that were sticking out in my mind right now. I feel bad that I could only pick so many. Please know I enjoy ALL the blogs I read! There are SO many inspirational stories and EVERY CHDer that I've read about has touched my heart FOREVER!

"Thank You" ALL SO MUCH for the WONDERFUL comments on my last post, it meant ALOT to me! =D

Sending everyone LOTS of WARM **Heart Hugs**!!
May God Comfort, Bless, and Guide you on your journey!!

Now, off to work on a BIG paper and study for a BioPsych test... fun stuff!!

With LOTS of Hope, Love, and Faith,

Tuesday, November 17, 2009

November is a BIG Heart Anniversary Month for Me!!!

There are TWO BIG Heart Anniversaries for me this month. One is coming up this Saturday, November 21st... the 20th Anniversary of my Fontan Procedure, the surgery that gave me a second chance at life! BUT this past November 10th was a BIGGER one for me! I'm SO sorry I didn't post about it sooner, but college is keeping me SO busy with three tests and a huge paper... I thought sense I have about two hours before my class and I start my busy day I would share with you the nightmare, the hell my parent's faced Novemeber 10th, 1987 when I was 11 weeks old... the day of my CHD diagnosis... the day that changed their life and mine FOREVER!!!

At about 6 weeks old my mom started to get worried about me, as I wasn't acting like myself. I became very difficult to feed and I would throw up EVERYTHING I ate like a water foutain my mom said. This worried my dad as well, so my mom took me to my pediatrician. He told my mom that I was just a musicy baby and I was fine. My mom KNEW that SOMETHING was wrong! I started to get a rash all over my body, so my mom took me to the doctor's again and again they said I was fine! I started to have night sweats, so AGAIN my mom took me to the doctor and AGAIN they said I was fine! My amazing mom took me to the doctors EVERY WEEK for 6 WEEKS!!! Then, after the 6th time she brought me home from the doctors, something scared my mom. I started to breath very heavily and was turning blueish gray when I cried. My mom called my dad asking if she should just take me to the ER of the nearest hospital as my doctor thought my mom was just a parnoid mother, but I was my mom's second child plus she was a nurse, so she KNEW something WAS VERY WRONG!!! After talking to my father my mom decided to take me to the ER of the nearest hospital before it was time for my older brother to get out of Kindergarden.

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Me at a few weeks old... I think about 8?

As my mom walked through the doors of the ER, ALONE, she had NO IDEA what was going to happen! God must have been watching over me because what happened next as my mom has told me was fate and saved my life. There was a DR. on call in the ER that saw me first and it just so happens he had JUST finished learning about Congenital Heart Defects/Disease in infants and children! He took one look at me and took me from my mother to rush me back for an x-ray, but he already knew what was wrong! He didn't tell my mom right away though... my mom sat in the waiting room alone till a DR. came back to tell her that I was in serve heart failure and I have some short of CHD. That I needed assistance breathing to keep me alive and they had just called an ambulance to take me to Children's Hospital of Michigan ASAP!

My mom called my dad at that moment. Luckly my dad's work wasn't too far away! He dropped what he was doing and came over to comfort my mom! As he got there the ambulance pulled up and the Doctors told my mom she couldn't ride with them because I required too much assistance and that they weren't even sure I would make it the ride to the hospital. My mom said she was in tears! As my parents followed the ambulance, they told me is was surreal and that it was the longest ride of their life! IN THAT MOMENT MY PARENTS WERE LIVING EVERY PARENTS WORST NIGHTMARE>>> HELL!!!

My parents waited for what seemed like forever in the children's hospital waiting room! Finally, my cardiologt, the one I STILL have to this day, came in and told them in the calmest voice ever (as my parents put it) that I was stablized, but very ill! That I have a CHD called Tricuspid Atresia and would require an emergency heart catherization to save my life once he got my parents consent. He talked with them, he was kind, sweet, and caring. He answered questions and supported them... my cardiologist is amazing! The next day I had a heart catherzation to rip a hole in my heart because the one every child is born with had closed like it should, but that was the thing that was keeping me alive! I was put on a few medications and a special formula which consisted of concentrated Isomil with polycose added so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age!
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My dad feeding me.

My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me she would put me in my bouncer and try to get me to laugh or smile then she would take the small sireng that she filled with the special formula and put a drop in my mouth and she would make funny faces to make sure I swallowed it. This took about an hour for one ounce and she needed to feed me every hour.

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Me in my bouncer with one of the many smiles they
got out of me!

If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. And of course Ryan adored me so it was hard to keep him away from me. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well. It wasn't easy for them, but they kept strong for me and held onto faith that I would be ok. My parents didn't want to accept that something might happen to me.

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Cuddling with mommy!

In early February of 1988 I had my first open heart surgery. It was called the Pulmonary Artery banding surgery...

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Few days Post-PA Banding.

It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. All went well during the surgery. Though it was successful in its purpose it didn’t make it any easier on my parents and family. As one of my grandpas have said to me about seeing my after surgery "It was a sight to see and very scary." Because I was so sick I had about a 20% chance of dying after this surgery. As my parents have told me, hearing any percentage that your child could die is not something you want to hear, but I beat the odds. My parents never lost hope! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!

Soon after returning home I got dangeriously sick with RSV! I was taken to Children's Hospital and admitted. I spent about a month recovering from RSV on lots of medication! My dad tells me my crib has a bubble thingy over it to keep my air clean and for breathing treatments (I wish I remembered the proper name for it, but I forgot). After returning home from recovering everything went well and my parents as well as my older brother ajusted. Ryan LOVED playing with me! We began to be a normal family of four and my parents were felt more confident and comfortable in taking care of me. I had a few bumps in the road along with eye surgery at 18months, but I was HAPPY and I always seemed to SMILE!! The Fontan would be in the near future, but that post is for Saturday!!

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My older brother, Ryan, and me.

I HAVE HOPE~FAITH~LOVE... that ONE DAY CHDs will be more publized and researched! That more children will be saved!!! That all newborns have an echo so kids like me and many others don't get diagnosised till later or when it's too late!!! That maybe we can find a way from prevent some of these defects to some kids won't have to live life fighting!!! I will NEVER stop rasing CHD Awareness and I will NEVER stop telling my story!!! SO PLEASE, go to my right side bar and pass on my CHD Awareness Videos! Tell ONE person about CHDs!!! I stand STRONG and will NOT let my CHD prevent me from LIVING and MY HOPE is that THOUSANDS MORE CHDers can GROW UP like me and LIVE and DREAM and HAVE A FUTURE!!! I KNOW God sent me here for a reason, so I will use my VOICE for those who CAN'T speak!!!

"Thank You" for reading and for ALL the wonderful messages, much heard prayers, and e-mails! They really do mean A LOT to me and put a smile on my face! I'm sorry I'm behind on reading blogs, leaving comments, answering e-mails, and posting, please know I haven't forgotten any of you! College is really taking alot of my time right now as the semester is slowing coming to an end and I need to focus! BUT I think of ALL of you and pray for ALL of you everyday!

May God Bless, Comfort, and Guide you on your Journey! Sending ALL of you WARM **Heart Hugs**!

With LOTS of Hope, Love, and Faith,

Saturday, November 14, 2009

2010 CHD Awareness Calendar

Hello! First off, I just want to say a HUGE "Thank You" for all the prayers and support from my blog community, especiall with going and visiting baby Sam's caringbridge site! Thank You! You guys are amazing!

Secondly, a big "Thank You" to all that have prayed for me, especially about my finding an H1N1 shot. I'm happy to say that I found one and got H1N1 vaccinated on Thursday morning! =D I'm VERY relieved! So, "Thank You"!!! You guy are SO SO sweet!!

NOW...

The 2010 CHD Awareness Calendar!!!! A wonderful photographer photographed me in April of this year for her CHD Awareness Calendar that she was doing. This is her first year doing something like this, but I must say the calendar turned out amazing and she is an awesome photographer!!! Her name is Kimberly Coombs and her regular website is: http://www.coombsphotography.net/

I'm the month of August in the calender... here is my picture which most of you have probably seen at the bottom of my blog.


The CHD Awareness Calendar was dedicated to a very special little boy named Ethan who earned his angel wings this past May at just 8 1/2 yrs. old (he had HLHS). I only met him once, but he touched so many lives, he continues to inspire many! Ethan is May in the calendar:

The Calendars are $20 each and all the money will go to an Organization called Hearts of Hope SE MI which helps families affect by CHDs get the support they need. Here is their website if you'd like to visit them: http://www.heartsofhopemi.org/

Here is the link if you'd like to purchase one:

That's it for now, have to get back to homework. College has been keeping me really busy! Hopefully I have time for a post and to catch up on reading blogs soon! Just know I'm praying for SO many! There is not a day that goes by that I don't have some amazing child/adult on my mind! May God comfort, guide and bless you on your journey!

With LOTS of Hope, Love, and Faith,


P.S. Baby Sam (HLHS) will be born over a month early next week because his heart is looking too concerning to the doctors. Please, keep baby Sam and his family in your prayer during this very difficult time. Thank You! http://www.caringbridge.org/visit/babyowens