Saturday, December 18, 2010

A Small Update... 2yr Anny... Happy Holidays, Merry Christmas!!

Hello Everyone!

I know it's been awhile. It seems like I get so busy with school and other things that I forget to update my carepage and my blog. I'm sorry about that, I'm going to try to be better at it. I took two online classes this semester since I'm temporarily living in California and my college (and family) is in Michigan. I finished both classes this week! I'm so happy to finally be in Holiday break! :D

Health wise, I've been doing pretty good. I've been having trouble sleeping lately, but that can happen for me from time to time. I need to get on a schedule, get a small exercise schedule, and stop worrying so much (but it's hard to not worry about everything especially with being away from family).

On November 28, one of the oldest Tricuspid Atresia survivors, Steve Catoe (his blog was called "The Adventures of a Funky Heart"), passed away. It was a shock to me. He was 44 and I had "known" him for over a year via the internet. He was a nice guy who not only gave so much Hope to so many, but also gave so much information about CHDs (Congenital Heart Defects) on his blog. Steve also knew how to LIVE to the fullest despite limitations! He taught CHD parents to let you kids LIVE and that No one is promised tomorrow especially us CHDers. I know Steve never had the Fontan (an open heat surgery for Single Ventricles) and had health issues for awhile, but considering when he was born and how bad the CHD technology/care was it is a Miracle in itself he made it to 44. Steve is one of my heroes and his legacy will live on! I hope I'm doing as much for CHD parents, CHD warriors, and CHD Awareness as he did. Rest in Peace Steve and take care of all those CHD Angels as well as keep cheering on those of us still fighting! SO Remember to LIVE, let your CHD LIVE to the fullest they can! Make Memories and just LIVE! Because in the end that is all that really matters no matter how long ones time on earth is.

On a more BRIGHTER Note:

December 7... "A day that will live in Infamy" Was Chris (my amazing boyfriend) and I's 2 year Anniversary of being together!

Chris left a beautiful card for me to read when I woke up! And then he came home from work a bit early and took me out to dinner at Outback Steakhouse; so sweet! It was a nice and quiet night together. I love him so much!

Here is a picture of Chris and I:

Christmas is coming up next week!!!! I can't believe it!!! It will be our first Christmas away from family! I think it's harder for me. Not only is my family struggling back home, but I'm so far away from them. It will be sad not to be with them on Christmas, but I will call them and think about them. We love each other and that's all that matters. Chris and I will have a quiet Christmas with just us. No tree or decorations (no money for it plus we are moving back to Michigan come May, so there is only so much we can bring back) and NO SNOW! The no snow part will be SO weird! I know in Michigan they already got a lot of snow and very cold weather. I don't miss the cold weather or snow haha, but it will be different that's for sure. It's been raining a lot over here in Northern Cali, but hey I'll take it! :P Some that Chris workers with invited us over for Christmas dinner since we will be without family, so that was really sweet. I'll be making a dozen easy bake cookies (they are the break and bake Toll House cookies haha) to bring over to the persons house; I like to keep it easy. This Christmas I will be missing my family (I've been missing them for awhile as it's been over 7months without them), but they will be with me in spirit. I'm not expecting or needing anything for Christmas, just want spend time with Chris and enjoy a nice day with some good food with my family in my heart. Come May I'm going to be SO excited to see family! But in June I have a few doctors appointments including TWO cardiology appointments, but I will face that when it comes.

I'm hoping to do some more updates and blogs after the Holidays. Till then I hope you all have a Wonderful and Merry Christmas and/or very Happy Holidays!! Be Safe!!

Praying all my CHD Community especially those who will be spending the Holidays/Christmas at the hospital or without a loved one and/or CHDer.

"Hope"! Happy Holidays!

With Lots of Hope, Love, and Faith,

Saturday, November 20, 2010

A little bit from me…. A 21st Fontan Anniversary… Words of wisdom from My Mom

Small update on me: I’m doing well! Got my flu shot a few weeks. Haven’t been sick yet, fingers crossed. Online classes are going ok; one class going well and the other not so well (she is a bad teacher it seems… should not be teaching online). Thanksgiving is coming up and will be the first one away from family, just Chris (my boyfriend) and I. We decided on getting Boston Market and just relaxing… and of course calling family to say “Happy Thanksgiving”. We are both doing well and just living! So Happy “Early (of late for Candians)” Thanksgving everyone!! I am definetly grateful and thankful for many things, the most important: My life, I’m still here and living. Today is an “Early” Thanksgiving for me…

…Today it has been 21 years since my Fontan (2nd open heart)…

Today, 21 years ago…

My parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure, I had the Modified Fontan (they don’t this one anymore, there are many different types/revisions). 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, but especially and more so ME. The Fontan was a surgery that was only about 10 years 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%.


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, I had a few: I had drainage issues, needed to be on a special diet, had a rest tube reinserted after it had been pulled (my parents had to help hold me down as there weren’t enough people at the moment), and one Heart rate scare. 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 colleagues for working hard to develop such a life saving surgery.

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?


My older brother, Ryan, and I on Christmas Day, 1989... 4 days after 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!!! Here I am, 21years 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).

I’ve never celebrated my Fontan-anniversary, as my parents never brought it up. My parents never dwelled on my CHD, they never brought me up to dwell on it either. My parents did not want my CHD to define me or be something talked about all the time, thus we never celebrated as my parents were grateful and thankful EVERYDAY to have me. My childhood despite doctors, tests, hospitals, etc. my parents gave me the most “normal” childhood, I was happy; I’m SO thankful for them for that. They taught me independence and they always focused on what I could do and not what I couldn't. I knew about my special heart, but my parents told me everyone has problems or things they need to face in their life, mine was my special heart. That God didn’t make a mistake; he knew I could handle it. I owe it my parents, the doctors, God, and everyone else that played a big part in saving my life to LIVE! That I do… LIVE! I will continue to LIVE! I’m just celebrating a little bit today, but for the most part it’s just another day as just like my parents did… EVERYDAY of my life I’m Thankful! BUT my parents will NEVER forget that day, they remember it like yesterday & though I have only one memory I too will NEVER forget the day... this day 21 years ago that I was given the best chance at life! I must say a BIG thank you to the two surgeons who saved my life, but never got to meet since: Dr. Arciniegas & Dr. Hakimi!!


**Here are some words of wisdom from my mom, please know this is just my mom’s feelings and opinions:

**Suzanne (my mom)**: "As Lauren's mom I can say that I never had forum boards, facebook, help groups, friends who have CHD kids, nor was my family educated with the knowledge I had being in the medical field. Parents please don't take this the wrong way, but, sometimes these forum boards can make things worse for you emotionally. I've raised Lauren with the knowledge of her heart condition on a 'need to know' basis at the appropriate age. I've taught her to listen to what her body is telling her always. I do not know what it feels like to have a CHD, therefore I rely on her to tell me. I NEVER dwell on her heart condition, I know the risks involved and I know what I have control of and what I don't. Yes I worried about every procedure.....I taught myself to think of HOW I'm going to handle the outcome of a procedure in terms of: questions to be asked, who I was going to believe lol, pros and cons of the procedure itself, making sure Lauren's brother was taken care was basically a own personal business that I ran. No one was allowed to touch her unless I read the chart and spoke to the professional at hand. Only the IV team was to poke her, and I requested they send someone who could do it the 1st time. I watched over her like a hawk! And yes I have gotten people either fired or taken off her case because of neglect. It's my job to CONTROL ONLY WHAT I CAN......the rest is in God's hands. let's not forget that as these children grow stronger....your goal is to let them go and grow....give them the knowledge to be independent....I know that's hard, but it has to be done. Don't think for one minute Lauren being in CA doesn't bother does, but I gave her the skills and knowledge she needed to grow as a person.....and now, had to let her grow emotional, mentally, without me at her beckon call sort a speak. She has always been a home-body, but I knew she needed to spread her wings.....I miss her everyday....but I'm so proud and happy that she is breathing independence.”

Thanks Mom for sharing! Love you and miss you! (below a picture of my mom and I the day I left for California)


I miss and love my family and I can’t wait to see them in the beginning of May 2011!

Praying and thinking of SO many!! Thanks for all your love, support, and kindness!! It truly means a lot to me!!

With LOTS of Hope, Love, and Faith,


Wednesday, October 20, 2010

It's Been a Long Time!!!

Hello Everyone!

I know it’s been a long time since I did an update on me. I apologize for that, things have been busy, crazy, or I just didn’t know what to say. I don’t know where to start!

I guess I start off by saying a HUGE “Thank You” for ALL the sweet and kind birthday comments I received! They all made me smile! Thank You, it means a lot! I had a wonderful, quiet birthday even though I was so far from family for the first birthday ever. I received phone calls from them, which helped a lot. I spent most of the day just relaxing and when my boyfriend, Chris, came home he took me out to dinner at a restaurant of my choice (I choose Outback Steak House… YUM!). Chris had left me a surprise before he went to work as when I got up hours later there was a birthday gift from him on the kitchen table, awww. He is the sweetest, most loving boyfriend to me, I love him SO much! I received so much love and kindness from not only my family and boyfriend for my birthday, but from so many other people like you all! Thank you from the bottom of my heart for making my birthday so special!

I’m going to rewind a bit before my birthday as I forgot to tell all of you that Chris took me to San Francisco about 2wks before my birthday. We both had never been there, but it was only a 2hr drive from house temporary home in CA. It was a very nice day, perfect weather and we has a very nice time. Lots of walking was done and I slept like a rock that night haha. It was very crowded and though we don’t exactly like big tourist cities we did have a good time and some fun especially just spending the whole day together without any distractions. Below are a few pictures that I snapped that day.

Awww, aren't we cute? hehe

I thought this bread was cute!

The Golden Gate Bridge! So big and pretty!

Now, I can update on what is going on in my life right now as I feel all caught up. As of Sept 8th I started my college semester. I need to finish up my Psychology degree at the University of Michigan-Dearborn as I’m senior standing, so since I’m over here in California for a year I had no choice but to take online classes. I’m taking two this semester: Intro into Literature and a Sociology class called The Family. Things are going well so far, it’s harder than going into a class I think because everything is totally up to you. In the beginning it was so frustrating because our internet was not working right at all. It would go in and out or go really slow or go out period for hours at the time. We called many times, but they said there is a problem with the connection in our area and they are working on fixing it. Luckily, for weeks now the internet has been working great! Hopefully it stays that way! Fingers crossed!

I’d like to ask for prayers for my family. My mom and dad (they have been divorced for years) are struggling so bad financially. Things the past week have been looking up for them a little bit. I wish I could help them, but I have to help myself with my struggles first. I’ve been under lots of anxiety and stress over everything my family and I are dealing with. I started have weird rhythms, but I called the cardiologist and I’m fine, it’s just anxiety and stress. I just need to calm down a bit… they have gone away for almost 2wks now!

I also learned that I need to get a whooping cough/Tetanus booster shot as California as an outbreak of Whooping Cough. I’ve never had it before, but I haven’t had the booster, so I need to find a place that will give me one even though I’m not a CA resident and no health insurance here. Wish me luck! I DID get my flu shot this past weekend, so that made me feel better. It didn’t give me a fever this time! Yay!

This weekend will be busy as two of my boyfriend’s friends are flying in to California and we are going to Anahiem, CA for Blizzcon (a video game convention). I get to see downtown Disney, but NOT Disneyland as they paid to go to the convention. I should still have a good time. I’m excited about getting out of the house and doing some fun things. I will try to update on how everything went when I get back.

Oh, before I forget:

My little brother, Aaron turn 12 October 11th and my niece turned 1 October 14th! I so wish I could have been there, but they know I love and miss them SO much!

My Little Brother, Aaron, and I over the years! :D

My adorable niece, Liliana, now a year old! :D

October is also the month I was diagnosised with my CHDs 23yrs ago! I was about 8-9wks old and in severe heart failure and almost died. I don’t like to dwell on the time I was diagnosised, but I will never forget it, well my parents really as I don't remember any of it. You can read my CHD Journey by going up at the top of the page under my header and click on the Tab that says "My CHD Journey".

Baby Me at about 8-9wks old a few days after my Emergency Heart Catherization to save my life.

Ok, that’s about it for now. Please keep all CHDers in your thoughts and prayers… I know of so many struggling right now and we have lost so many. My heart aches for all of them! They all touch my mended heart and I think about so many often!

Despite all of the Heartache in the CHD community lately, I just keep LIVING! Not that it doesn’t hurt as my mended heart aches for them so much along with their families (I've cried for them too), but as a CHDer myself I can’t dwell on my own morality. The CHDers, big and small, who have passed are Heroes and we owe it to them to LIVE! So, LIVE, keep fighting and keep spreading awareness. The CHD angels lives will never be forgotten and we will continue to fight! CHD Angels give me strength to keep going and keep fighting! The doctors, surgeons, parents, and everyone else saved us to LIVE no matter how long that may be. If you dwell it will eat you up! Maybe (not for sure) that’s why my parents never was interested in being a part of the CHD community when I was growing up, not that they wouldn’t have loved to talk to others, but dwelling on the heartache and all the bad might affect the Living part. I go by this: no one knows when they are going to go or how, CHDers like me or other children and adults with illnesses are at a higher risk, but we still don’t know what will happen. So cherish every day, make memories, love one another, enjoy life the best you can in any situation, and LIVE to the fullest that you can!

Love and hugs to all!

With LOTS of Hope, Love, and Faith,

Tuesday, August 24, 2010

Today I'm 23!!!

Today I’m 23. Another year, Another milestone, Another miracle as I’m ALIVE!

This year has been one with many changes that have put me to the test. The biggest is leaving my family behind and moving across the country with my boyfriend, Chris. Chris got a one year internship at Intel in Northern California and I’m super proud of him, but him getting the job gave me one big decision. It was hard, but my heart is with my boyfriend and so is my future. I know my parents didn’t want me to go especially because of my heart, but you have to take chances and adventures in life whether or not you have a heart defect. I’m so proud of myself and of my parents for letting go over the past couple of years as I'm sure it’s been hard giving me the responsibility of my health and my life. I think with everything that has gone on this past year it just flew by! I miss my family since moving. I’m so use to a big birthday bash every year since my very 1st birthday whether I wanted a big bash or not. The past like 8yrs I haven't wanted a big bash, just to be surrounded my my loving family. My parents have always celebrated my birthday as another big milestone, another year of beating odds. I now celebrate that too, I just don't need the party. Though I won’t have my family here with me this year, I know my birthday is still very special and is yet another milestone and celebration of my life for beating more odds. I will receive phone calls from family and my parents will speak their heart about how happy they are to see me another year older like they always do. I will most likely tear up, but though far away a celebration of my life will still be thrown.

I don’t feel another year older or wiser, but I have learned a lot. I always seem to be learning, that’s a part of life. I’ve been so proud of myself the past couple of years. There are so many things I’ve overcome or accepted. When I was 16 I learned more about my heart defect, how serious it is and my unknown future. It was hard and with learning that came coping and a few minor health issues along with family and money issues. I have accepted a few years ago that my heart defect will be the thing that will most likely kill me one day that I will always have challenges, but in the end my heart will win. In all of that I have decided that I will LIVE to the fullest, throw away statistics, and take chances (not the bad ones like doing drugs). I continue to cope with fear and challenges, but most of the time I feel “normal”. For everyday I wake up I feel grateful for the new day and every night I go to bed feeling so blessed for the day I got to be apart of. I have come along way in my short 23 years of life and have beat many odds. From being the very sick 11week old that they gave a slim chance of living to the small child they thought would never reach adulthood, here I am at 23. There is not one day that goes by that I’m not grateful and blessed for everything I’ve been given. I’m SO VERY grateful to my parents whom I love SO VERY much and had such a HUGE part in getting me where I am today. I’m also SO VERY grateful and owe my life to the doctors and nurses that saved my life. I’m so grateful to have an amazing family which includes two brothers, a niece, two grandparents, and very much missed grandparents and great-grandparents in heaven. I’m also grateful to have one amazing and loving boyfriend who does a great job at taking care of me. Lastly, I’m grateful to my faith in God as he has given my strength to help cope with everything and helped in my positive attitude.

I plan on living to 80, I like to aim high. I don’t know what my future holds, but I know more procedures, pokes, prods, 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’m ready for whatever else life has to throw at me. Today though, I will take the day to remember birthdays past and to look forward to birthdays to come as well as enjoy the moment, the precious thing called life!

I’d like to say a HUGE HUGE “Thank You” to YOU my AMAZING CHD Community, the community I call me second family! Thank you for the ongoing support you give me, the love, the much heard prayers, and the kindness. Thank You to those who have sent me cards, birthday comments, birthday wishes, birthday prayers, and birthday gifts as well as a BIG Thank You to ALL of the kind birthday wishes & birthday comments I will receive today; ALL of which means SO SO VERY much too! My heart has been touched in words I can’t describe. I have NEVER asked for anything, all I ever wanted was to support, pray, spread Hope, and spread Awareness, but what I got in return is something that I will be eternally grateful for. So “Thank You” all of you amazing, inspirational, kind, and sweet CHD parents, Adult CHDers, CHD kids/babies, CHD grandparents, CHD Angel Parents, & the sweet CHD Angels. Let’s keep supporting, fighting, learning, praying, and inspiring!

I have a dream to impact the world in some small way, but I think my dream has already has come true. My next dream is to cure CHDs… Who is with me??

Today I’m 23, tomorrow is a new day and the adventure of another year awaits me.

Me on my 1st Birthday in August of 1988

Me on the Eve of my 23rd Birthday, August 2010

Praying and thinking of SO many!
Sending LOTS of **Heart Hugs** to ALL!

With LOTS of Hope, Love, and Faith,

Tuesday, July 27, 2010

Scars... Scars... Everywhere!!


"The imprints on my chest that are forever etched into my skin are a window into a reality of a war I want to win as well as peranent badges of honor from brave battles already won" ~Me (Lauren Celeskey, CHD Survivor)

Scars... a major part of having a CHD whether they are internal or external scars. I'm going to talk about those external scars, those imprints on my chest, but before I do, I gathered some thoughts & experiences of some heart moms as well Adult CHDers. Since most of my readers are CHD moms, this is for you. Your not alone on your feelings! We are in this together!


"All of us have scars. Some have scars that are visible to others,and some have scars that can't be seen, but can only be felt inside. Derrick has touched my heart and given me a scar that will never fade. Scars are not bad. They make us who we are. They give us personality, and they help us tell our stories. It's what we do with ours scars that really matters."

~Shannon, Heart Mom to Derrick (TGA, Single Ventricle, small pulm artery, Dextrocardia, & Mitral Atresia)

*Heart Mom to Bayden (ToF, ASD, & Subaortic membrane) shares some of her feelings:

"Bayden was born March 14, 2009 with the Congenital Heart Defects: Tetralogy of Fallot, Atrial Septal Defect, and Subaortic Membrane. He had his full repair when he was 4 ½ months old. We call Bayden’s scar his zipper. It’s the doorway to his mended heart. His scar is something I hold very dear to my heart. His “zipper” has a good story behind it. I love telling people about his Congenital Heart Defect when they ask “Why does your son have a scar?”. Bayden knows where his scar is and what’s behind it. When you ask him where his heart is, he points to his scar. I love my son’s scar. I hope when he gets older he will love it too. I really hope he is not ashamed of it or is insecure about showing it off. His scar defines him. He is my survivor and he has the scar to prove it!"

*Heart Mom to Riley (Transposition of the Great Arteries) shares about her daughter’s scars:

"I can remember since the first time I saw Riley's chest, all I think about was her future. Is she going to be made fun of? Will she still be as confident as others? Will she develope normally, as in becoming a woman? I have so many hopes and dreams that she will be "normal" and she will accept and embrace her scar because she will be different and that is a reality.

We were swimming not to long ago, and Riley had this cute two piece on and I could see parents staring and whispering. Why couldn't they come to me? Ask me? This one little girl came up to me and said"Is your baby ok? She is cute, what is on her belly? What are those little marks. Do they hurt? Why are there so many?" I began to tell her Riley had surgery as a baby and they were scars from where the doctors fixed her heart. The little girl says "Wow, she is a real miracle. Can I touch them?" She rubbed her "zipper" and ran to ,I assume, her mom. The lady grabbed her daughters hand and began to point and yell. Then, they left. Why can't adults be like kids and just ask? My kid has a scar, not anything anyone can catch, she is not contagious.

Riley will rub her "zipper" and say "Whats dat!?" I just laugh and say"Your beauty mark baby!" If she didn't have it, I would not have her. Surgery was not an option, it was the only way I could have seen my kid alive. I love her scars and I wish others would ask and not shy away. It's just a scar!!!"

*Heart Mom Kathy to Ethan (Tricuspid Atresia, Pulmonary Stenosis, HRHS) shares about her son’s scars:

"My son Ethan is the chd'er, he has had 3 open heart surgeries and 1 thoracotomy. He is very proud of all his scars, he is only 5 years old and likes to call his scars his zippers. He likes to pretend he is unzipping his zipper. People do s...tare at him a lot, people are not used to seeing children with chest scars, he tells people that Dr Knott-Craig put in his "zippers' and when he needs another surgery the dr will just "unzip" him and fix his heart then "zip" him back up. His body is scared up from many many surgeries not just heart surgeries and he takes it all like a champ, this body is the only body he knows. He looks at his scars as badges of honor!!"

*Heart Mom, Dana, mother of 2 CHDers shares her feelings on scars:

"My 13 year old daughter occasionally exhibits some concern about her scar, but most of the time she's very comfortable with it. She is quite happy wearing tank tops and 2 piece swim-suits, and shows little concern for whether her scar "is showing". Her last surgery left her with a bit of an "angle" to the top portion, so it no longer looks like a perfectly straight scar down the center of her chest. The last surgery (her 3rd) also left it with more pink and red areas to the scar, and more lumpiness to the scar. This comes due to the fact that they had to cut through old scar tissue and along the edge of old scar tissue, so the new scar tissues are forming next to and around that old scar, creating more of a lumpy effect.

As parents, we have tried to NEVER to comment if scars are showing, so as not to make them self-concious, or to give them any reason to feel as if they should hide them. Those scars have made my children and my family who we are. And we always know that if they feel differently after they reach adulthood, there are scar removal and scar treatment options that can be considered - although with their conditions, they will most likely have continued procedures throughout their lives, so being "scar-free" is probably not an option for them at all. I hear people talk or write about other children's reactions to the scars and we have not had any really bad experiences there. We do get questions from both adults and children, and we just answer them openly and with whatever details they care to hear. For the most part, my daughter's scar has led her to many conversations in our travels that she would never have had without the scars as the "initiating subject". It has opened the door to many conversations, examples being an elderly man in an elevator who had recently undergone OHS and was actually surprised to see the scar on a young girl; a 20 year old young man, OHS and CHD survivor, at the resort pool in Las Vegas who otherwise would probably not have had any reason to start a conversation with a (then) 11 year old girl, they had many interesting conversations regarding what they had been through and survived and how it affected them now."


Heart Mom, Mina, shared when her then 3yr old son, Bilal 1st really noticed his scar:
After bath time, Bilal was perched, as usual, on the bathroom counter, getting ready to brush his teeth. While he was staring into the mirror he stroked his sternotomy scar with his finger. The conversation went something like this:

Bilal: "What happened here?"
Mama: "That's where the doctor fixed your special heart."
Bilal: "Nawwww! That's where I hurt myself last week!"

Oh how I love the innocence of children. I too had that innocence, but as we get older, we can go different ways on our feelings of our scars. Here are the feelings of some other Adult CHDers.

*I'll start with myself, Lauren (Tricuspid Atresia, HRHS):

"I noticed my scars at a young age, I don't remember when, but I never thought too much of them. I remember asking my parents what happened and they told me something similar to this "Doctors had to make my special heart better and those those are your badges of honor." As I got older I loved my scars and was never afraid to show them off. As I got to school age I never came right out and told people about my heart or my scars, but if someone noticed them I was more then happy to tell them "I have a heart condition and needed open heart surgery."

But what about stares and remarks? My parents told me they got some stares when I was little and they would ingnore then or just tell people. They never gave off they vibe that they were upset about stares, but maybe they just aren't telling me how they felt or just don't want to talk about it. I do know they were VERY proud of my scars and weren't afraid to show it. My scars held alot of meaning to my parents and still do and I know that they hoped that I would grow up to appreciate and love my scars just as much as they did. For the most part I did. I love them! I do know during my teenage years I was a bit self concious of them and didn't share with many about my heart condition and always hoped no one would noticed my scar. As far as I can remember I didn't have many people my age in junior high or high school asking me about my scars. I don't even think most saw them as in school, I went to a private school and had a uniform, my shirts covered up my scars. The times I did wear shirts that showed my scars, I didn't have anyone really looking or noticing them. Yes I got a few people and I would just say I had open heart surgery when I was little and that was it. When it came to wearing a bathing suit, I was even more self concious. I felt that when I was walking that people were staring, but most of the time they weren't. I did get stares and yes I didn't like them, but I ingnored them the best I could. A few times I said "you have a problem?" and they would turn away or I would start staring at them and they would stop staring haha. To those who were nice and just asked, I told them and I would get shocked looks, sympathy, wow's, "Your fine now, right?", etc.

Now, at almost 23 years old, I'm not as shy as I was as a teenager. I have no problem wearing tops that show my scar. I don't have a problem with telling people if they ask. I do have a problem with staring still, I think it's rude, I wish if people notice my scar they just say something if they are curious and not stare or whisper that makes it obvious that they are staring or talking about me. I do ingore it and I don't get that upset because they are strangers, I don't know them and they just don't understand. When I do tell people about what my scar stands for, I get the same different reactions: sympathy, wow's, shocked looks, questions, and some even are interested in learning more.

I'm super proud of my scars just as I was growing up. I've always thought of them as badges of honor. They tell a story of how far I've come and that I'm ALIVE! I would never want to get rid of my scars, they are a part of what makes me, me. I love them. There are times like when I was growing up that I forget I have them and I feel so "normal", but there are other times were I take a good look at them and I run my fingers down my scars and I smile, but it's also a sure real feeling that I can't describe.

Though I'm not afraid of showing my scars I know not everyone is like that and that's OK! Everything copes with them differently. It doesn't matter how one choices to share their scars and along as inside of themselves they are proud of them & understand that they are special. It can be super hard for some to accept that especially teenagers and that's ok. In their own time and with positive support they will hopefully accept them in their own personal way. Even if they don't love them and just accept them, that is just fine.

So, my advice or tips for CHD parents is: let your children know that their scars are special badges of honor. Support them in everyway you can. Teach them to ignore stares and tell them that those people don't understand how special they are. Tell them it's ok to show off their scars and share their story. If they don't want to show their scars, let them know that's ok, but also let them know they shouldn't be ashamed of them either. It may take time for them to figure out how they want to deal with their scars, but let them know that whatever they want to do is ok. Telling them thier heroic story and why they have those scars can help. I know some kids just want to fit in, I know I did, but tell them it's good to be different, but if everyone was the same that would be pretty boring. Their scars means that they are ALIVE and LIVING to the FULLEST! "

*Here is a Heart warming scar story from Laura, a 40yr CHDer (Single Left Ventricle and Transpostion of the Great Vessels):

"I am a 40 year old with CHD, after my second surgery when I was 16. I was at a water park and would not go go on the water slides because I was not allowed to go on with my shirt on. Well as I was sitting at the table watching my sister and... the other kids, go on, I noticed a little boy about age 7 not wanting to take his shirt off either. My mom was talking to his mom and I heard his mom say that he just had open heart surgery and didn't want to take his shirt off because of his scar. Well me being 16, and the mommy in me coming out, walked close to him, took my shirt off and smiled at him. He smiled up at me, took his shirt off, took me by the hand and we went sliding together for the whole day.... It was a small water park with only 4 slides in PA......."

*Here is what Francine, a 36yr old CHDer (Complex CHD, Heart Transplant)has to say about scars:

"As for me, being a 36 year old with CHDs, I took the "yeah, I've got scars! You got a problem with that" mentality. Of course, not "being any bigger than a butt hair" as my friend so lovingly says about me, I didn't really have all that swagger to go behind the words. Picture this pint sized, underdeveloped shortest-one-in-her-class kid coming out fists swing, ready to challenge anyone who wanted to question her scars.

I'm still that way. I survived for a reason, and if swinging my fists to get out the CHD message is why I survived, then that's what I'll do. Sometimes, the mightiest of us all is the smallest voice!

I do remember a few people more looking at the fact that I was blue than the fact that I had scars (of course, I never had the tell-tale down the front zipper scar, since I never had open-heart surgery). My main scar that was visible was the one for my BT shunt, and people could never understand how a scar on my left shoulder could be from a surgery to help my heart.

In Grade 11, I actually did an oral report about how to react when seeing a disabled person. I included someone who's lips were blue in my speech, though I don't believe I was "blue" at that time. I think I was between surgeries at that time, and fairly stable, but I wanted to put up the good fight for the little guys (like all you parents' children) who are living the CHD reality like I am, but are so much younger. It was my way of being "in your corner", I guess, and I still do that today."

*Adult CHDer, Jason (TGA, VSD), shares a few of his thoughts about scars:
"When I was younger with my scars, I always knew I was different. I knew that I was the only kid on the block, or in the school for that matter, that had scars or this "condition." I always remembered my mom telling me, never give up and be proud about your scars. You can do anything you want too, and I always did. I was proud to show my scars and tell people about them. I was proud to take my shirt off at a local swimming pool or at the water park. I even remember as a teenager, I would even joke about them. I would tell people I was "stabbed when I was trying to save someone." But then tell them the trough. I never let my CHD run my life, I ran my life with a CHD and didn't care what anybody thought about me. To surfing, wake boarding, snowboarding, and skateboarding, I have always been proud to show my scars."

*Here is alittle bit about scars from 35yr old Adult CHDer (Pulmonary Atresia), Tiffany:

"I have quite a lot of scars. I have my big one in the front and a half of one under my right breast. That particular breast didn't develope fully either. Then I have two scars on my back. One all the way across and of course all the way down. One was for my bypass and the other one for my scolois. As a kid I never wore a bikini until I got a little older. Although that didn't last to long. lol. The only one comment that I can say that I remember that was rude was. A girl I was working with told me that I shouldn't tell people about not hitting me in the chest or something like that. She was young and not very respectful at the time. I mostly just have kids who stare at me most of the time. If they ask I tell them what it's from. If there scared of me or something I just try to be a little more friendlier or I guess just let them know they won't get what I have. lol. I mostly get comments when I have to wear my heart monitor.

The funniest comment I got was from my third grade teacher who I got her twice. "Was is that thing going to record me?" lol. I think she was being funny. Although I did have one little girl in store ask me if that was a raido thing or something and of course I just said yes because she wouldn't of understood. She was just a toddler and plus I knew I'd never see her again. lol."

*Finally, 24yr old Adult CHDer, Alexia (DORV, ASD, Pulmonary Stenosis) share a bit about scars:

"Most younger kids feel as though their scar is a battle scar or a zipper or simply a badge of braveness. Whereas some older children/young adults hate the scars because it sets them apart, makes them different from their friends and during the teen years it is extremely important to fit in.If you have a major scar you are not considered popular because you are not perfect. The popular kids are generally perfect looking. Teenagers strive to be popular and to them,a scar would ruin that. Many teenagers/young adults don’t like to think about it so as long as they cover up their scar they don’t have to think about it. Out of sight,out of mind.
Parents can’t force their son or daughter to feel pride in their scars. Wearing clothes that show the scar should be based on what the child/teen/young adult feels comfortable in and not the parents desire to have their CHDer show pride in what they have gone through.
As long as the CHDer isn’t ignoring their health concerns, then who cares if they want to show off their scar.My favorite things to wear are t-shirts. Very rarely do I wear a v-neck. That has nothing to do with me not being proud of the scar and everything to do with me being a more conservative dresser.

I’ve been talking mostly about girls since the only time the boys are shirtless is in the pool. Even boys who don’t have scars like to wear a “swimming shirt” these days. For the boys that enjoy showing off their scar by going shirtless,just make sure you put sunscreen on the scar. Boys seem to have an easier time with the scar. In girls having a scar means you are unpopular because you don’t have a perfect body. In boys the idea of having a scar is cool and they are admired for having one.In the teen years girls seem to like the boys with the scars.
So having a scar is definitely setting a double standard. Girls are uncool if they have one and boys are cool if they have one. That double standard is really awful but kids and teens can be very cruel to those who are different."

"Be PROUD! Scars are BEAUTIFUL!"

I hope you all found this educational, inspirational, helpful, & put your mind at ease even just alittle bit because in this huge CHD world, your not alone in the feelings you have about beautiful Scars!

Every scar tells a story and that story is one we should be super proud of, so who cares what others think. LIVE! LAUGH! LOVE! And show those scars proudly when you & if you feel comfortable, but never feel ashamed of your scars or your childs.

A HUGE "Thank You" to those who sent me pictures and/or paragraphs for me to share in this post. :D

Love to all!

With LOTS of Hope, Love, and Faith

Monday, July 19, 2010

First Post of July 2010!

Hi Everyone!

I know it’s been awhile. I wanted to give a little update on how I’ve been doing. First off, Thank You SO much for the nice messages of support, they meant a lot to me. I’ve been doing better since my last update. My anxiety has been lower and my allergies haven’t been as bad, which is great! My family is still going through some tough times and I wish I was there with them, but even if I was there I wouldn’t be able to do much for them anyways. I will just continue to keep my family in my thoughts and prayers as well as call them when I can.

My bestfriend, Tiffany’s 1 year old, Kairi, has a cardiology appointment with my old Cardiologist (the one I had for 22yrs) on July 28st. For those we don’t know, Kairi was born with a murmur, but the murmur has sounded worse and her doctor wants to make sure she is CHD free. Murmur’s run in my bestfriend’s family (she has one, her grandma has one, & her uncle has one), but all have been checked out and been fine. But it’s good that Kairi is being checked out, just in case. Please pray & send good vibes for my bestfriend, Tiffany, and her daughter, Kairi. Thank you! I know that would mean a lot to her and it means a lot to me. I know Tiffany is so nervous and scared. I pray everything will be ok.

Thinking about you Kair! Love you kid!

In news about me, I have a Cardiac MRI date set, but I’m not sure if I’m going to keep it. So, I’ll announce it when dates are set. I did call my Cardiologist’s office today to ask some questions to my cardio’s awesome nurse pactioner. I asked about blood draws, I get one every year, but wanted to see if my new Cardio wanted them done somewhere else or if just getting the basics checked every year is enough; Just wanted to be sure. I also asked about a handicap parking pass thing because when it’s hot or really cold outside it’s hard for me to walk long distances, so we’ll see if I can get one. I always seem to be calling and asking questions about things since I’ve been older, I think that’s a good thing, but I sometimes feel like I’m bugging them, but that’s what they are there for which is to help me.

As for how I’ve been feeling lately, I’ve been feeling good. No SVT (very fast heart rate) episodes in weeks, my anxiety has been lower, and my allergies have been under control for the most part. I did not feel good last week though because of a tummyache and my monthly gift, but I’m back on my feet this week.

For the 4th of July my boyfriend and I went to Lake Tahoe for the day! We live 2hrs away. It was fun! We went to the South part of Lake Tahoe. We got there around 10-11am and played Putt-Putt golf. I lost, but that’s ok it was fun anyways. Then we went out to eat to a yummy burger joint right by the beach. After that we went on our 2hr cruise to Emerald Bay and Lake Tahoe. It was amazing! The Lake is SO SO beautiful! After the cruise we drove around for awhile, then headed home. It was WAY too packed to stay for the fireworks. We aren’t huge firework fans anyways. We got home and went out to dinner then crashed watching TV on the couch. It was a great day! Though we both got sunburned, my bf more so then me. We didn’t think we would because Lake Tahoe is cooler, but the sun was beating down on us haha.
Here are some pictures of Lake Tahoe:





On another note, my 23rd birthday. Yes my birthday is almost here, again! I will be 23! Another big milestone in the CHD world! My birthday is in 36 days! Woah! It will be the first birthday away from my family and I will be alone most of the day because it is a Wednesday ad my boyfriend will be at work. It will be weird and a bit lonely, but I will have my boyfriend at night. And I will most definitely have a birthday post for you all to read as I know I have some new readers.

Alright, sorry of the long post….I have one last if thing to say. I have been asking CHD parents what they want me to write about in new post, so if you awesome CHD parents have any new ideas for me please comment and let me know! Thanks! I will have a post about scars up by the end of the week. I asked many CHDers and CHD parents to write 1-2 paragraphs about scars, their feelings, experiences, etc and I got a lot of replies, but if I missed anyone please e-mail at: sweeetie2516 (at) aol (dot) com with something you’d like to share for me to use in the post.
Thank you!

Love to all! I’m thinking and praying for SO many!

With LOTS of Hope, Love, and Faith,

Friday, June 25, 2010

Long Update! Lots to Talk About!

Hello Everyone!

I thought it’s time for another update on how things are going for me. This is a Long update, so hang on tight!

Being in California has been a learning experience for me that’s for sure. My health has been a lot better the past 2 weeks, which I’m so happy about. I haven’t had any SVT (very fast heart rate) episodes and I’ve been keeping my allergies under control with over the counter medication. The weather has been slowly getting hotter and I spend a lot of time in the apartment by myself, which can be lonely at times. Most days I just keep the apartment clean, eat, sleep, watch TV, and go on the computer. But I’m ok with it.

Last Monday I did take my boyfriend to work so I could have the car to meet up with a Heart Mom, her 10yr old son, and her family. I had a good time. I love meeting CHD families, CHD kiddos, & CHD adults! I don’t get out much since I’ve been in California because I don’t really know anyone, so I had a good lunch out and enjoyed meeting new people. Thank you Becki Mobley and London for meeting me! :D

Other things have happened the past week or so that has stressed me out! I got the CHD Awareness Bracelets that I ordered and mostly all of them looked terrible! I was SO upset! I found out after I got them that the BBB (Better Business Beau) revoked their accreditation last year! Ugh! So, they won’t refund my money; I tried talking to them, e-mailing them, and doing a Paypal dispute & all I got was an offer to make more which I don’t trust them. I was upset for a week, but I’m ok now. I got scammed, It happens & I learned from it. I’m going to make different bracelets through a different and better company. Hopefully I earn all the money I lost back! Fingers crossed. I’ve been checking the BBB for a good wristband site that doesn’t have their accreditation revoked and doesn’t have an F rating like the one I went through. Please, if your thinking on buying wristbands from any company, be careful! Order samples first and check the BBB as well as forums for complaints. I don’t want anyone in my CHD family to get scammed out of money like I did. I’d also like to note that I have been a bit hurt by a Heart Mom who thought I was selling the bracelets for personal gain because I wouldn’t be donating the money. Please know I would NEVER use my CHD for personal gain! EVER! I WANTED to sell CHD Awareness Bracelets because I’m deeply involved with raising more CHD Awareness because I have to LIVE with this CHD my WHOLE life. I wouldn’t be gaining anything from the sales. Does paying a few medical bills from the sales mean I’m gaining anything? I don’t think so! I DON’T want ANY of you to think I’m gaining or that I use my CHD for personal gain because I DON’T and why would I anyways! That’s just wrong! If I was making too much money then I WOULD donate some! I WISH I could give money to CHD research right now and I WISH I could do more for my CHD family! I’m working on it, but it’s NOT easy when your limited! I LOVE ALL of you! Please don’t think badly of me!

The past week my Goddaughter, my bestfriend’s daughter, has been on my mind. I got a phone call last Friday from my bestfriend saying that Kairi (My Goddaughter, she is 1) had a check-up at the doctors for some shots. No big deal right, well Kairi has had a heart murmur since birth and murmurs run in the family. My friend has a murmur, her grandma does, and so does her uncle… all have been fine. The doctor was listening to Kairi’s heart and got quiet. He said that it sounds worse and he wants her to go get checked out by a Pediatric Cardiologist. My bestfriend is a bit freaked about it, but I told her it will be ok. I gave her the name and number of my old cardiologist that I had for 22yrs. She will make Kairi an appointment with him. I’m worried too, I mean she is already 1yrs old, shouldn’t she have been check out a long time ago? I pray nothing is wrong! Please keep Kairi and her mother (my bestfriend) in your prayers. It will mean a lot to me! Thank you!

The last couple of days I’ve had thoughts that I wish I didn’t have know is a reality in my future… open heart surgery. The past 5 or 6yrs thoughts of open heart surgery pop into my head every now and then, but as each year passes I get more anxiety about the real reality that in the next 10yrs or so I WILL need one! I PRAY it’s longer because I’m doing so well, but I know that is not guaranteed. I really shouldn’t be worry about it or thinking about it because no one knows what tomorrow holds, but to know from a doctors words that it is in my future, scares the hell out of me. During my last cardiologist appointment with my new Cardio that is not just a Pediatric Cardiologist, but also specializes in Adults with CHDs we talked or I should say he talked about a Fontan Revision with my for a little bit. I got frightened! No one should have to be scared about their future like this. Most days I’m fine, but since that appointment two months ago, it’s in the back of my mind.

When I was growing up I barely worried at all about my heart condition. For the most part I was a “normal” kid with some limitations. I knew I had a heart condition, that I needed to take meds everyday, that I had lots of doctors appointments, that I needed to be careful, etc But those were part of my normal! When I broke out into hives when I was 16 things mentally and physically changed. I started to learn lots more about my heart condition. I learned I was a one ventricle repair, that I had “Half a Heart”, that this was serious. It hit me like a ton of bricks. I think that when I developed my anxiety disorder. Since I was 16, little things have changed: My energy levels have lowered more, I have SVT’s (vey fast heart rate) to deal with, I have muscle spausms, allergeries effect me more, & I’m more aware of what’s going on inside of me. My cardiologist (both my new and old one) have told me that I’m doing well despite these issues, that this is just my new normal! WAIT… I DON’T WANT A NEW NORMAL! I want to be that kid again where I didn’t need to worry, didn’t have minor issues, had more energy, and was NOT fully aware how bad my heart condition was… NOW they are talking about surgery in the next 10yrs! HOLY CRAP! I WANT TO GET OFF THIS RIDE! Is there a STOP BUTTON? Guess not! I get my first Cardiac MRI this year and in the next 3yrs I will be getting a Holtor Monitor and a Heart Catherization… Yes ALL precautionary BUT he told me straight to me that all this stuff will help them when I need the surgery! Yup! That hurt! To top it off, I was told to start looking for warning signs of a big issue and when it happens, that’s when IT happens! IT? Yup, intervention! To say I’m scared can be an understatement BUT MOST days I’m doing well and DON’T think about it! BUT today I wanted to share.

I’m the type that doesn’t like to whine much. I like to put on a smile and be positive, but sometimes I NEED to share what I’m thinking. I KNOW I SHOULD NOT worry about all of this RIGHT NOW, but it was brought up to me just two short months ago and I KNOW he HAD to tell me, he is a doctor and he wanted to share my reality with me. I just wasn’t prepared I guess. I’m trying my HARDEST to slowly put it all in the back of my mind and put it to the side until things get to that point of intervention. I’m going to KEEP living my life to the fullest and be grateful for how well I’m doing NOW. Yes, surgery is most likely in my future, but who knows, they say in the next 10yrs, but I could beat the odds again and have it be 20 or NEVER! That would be nice! I’m going to start thinking like that because anything can happen and I NEED some positive thoughts!

Ok SO sorry for the vent! I NEEDED to share and get it off my chest! I feel SO much better now! Thinking of POSITIVE now! I MUST! I HAVE to!

Prayer Request: I have another prayer request for my Mom and my brother’s fiancĂ© (Ashley). Ashley had cancer a few years ago and went into remission. She just got a biopsy done this week because a test came back abnormal. She will know next week if the cancer is back. Please pray! And My Mom had minor surgery a few months ago to remove something abnormal, they thought they got it all, but another test revealed they didn’t. She needs to have yet another surgery to remove more. Please pray! Both of these women mean a lot to me! I pray everything is OK! Seems like everything happens when I leave! I just have to have Faith! The prayers will mean SO much to me!

Ok before I go, here is my newest CHD Awareness Montage! Enjoy! And Please, pass it on! Thank You!

*I will end this LONG post with some pictures! The first four are of the drive down to California, I took them driving in the car in Wyoming and Utah. The fifth picture is what we see driving down the street near our apartment, pretty neat. Last picture is one my mom sent to me for my precious niece, Liliana! She is 8 months old already! I miss her! Look at that smile! :D





What we see when we drive in our car everyday! Neat!

Isn't My Niece, Liliana cute! Hehe!

Praying and thinking about SO many!! It breaks my heart to read about all the heart breaking things my CHD/Heart Family is going through! Please know I'm praying! Have Faith! And your not alone!
All the messages of support, e-mails, and much heard prayers mean SO much to me! Thank You! ♥

With LOTS of HOPE, Love, and Faith,

Tuesday, June 8, 2010

Quick Update on Me and NEW Technology!!!

Hi everyone!

Sorry it’s been awhile since I last updated, but here is what has been going on:

I called my cardiologist last week for a few things that have been bothering me. I’ve had a few episodes of very fast heart rate (SVT’s). It happened like 3-4times and my heart rate would get up to the mid 100s, but after a few minutes it would go back down to my normal which is 80-85bpm. Now, I take medication for my SVT’s already, have for years, but a low dose and they said there may be a time I need to up my dose and I wanted to know if this was the time. I also had a 2-3 small 1min episodes of weird heart rhythms, which kind of scared me a little bit. I have also been having some pressure on my chest on and off for over a month that two doctors have told me it was allergies, but I wanted to see what my cardiologist thought. So, with that this is what he said:

-Since the SVT’s aren’t frequent and are non painful, the no need to up my medication at this time, but keep an eye on it.
-The few very short weird rhythm episodes do not warrant a holter monitor at the moment, but if they get frequent and painful, then it will.
-He believes the on and off pressure is also allergies and suggests I try some of the allergy medication that he suggested. If it doesn’t help, then we will discuss further. I’ve actually had this problem before and got checked out and nothing was wrong with me, so 99% sure it’s allergies.

I’m happy with what he said and it made me feel better. I’m feeling great, just hot as the weather here in California has gone up! Finally! I’m drinking lots of fluids and keeping the air on! California summer is here! I’m bracing myself! That's about it for me. I'm doing well, working on my CHD Awareness video and waiting to get my CHD Awareness bracelets so I can post my PayPal. BUT before I go Check out below:


WE have NEW technology coming out SOON that will help in CHD Awareness and dection!!

Take a look at this: It's called the General Electric VScan mobile ultrasound

Here is a video about it:

This device is going to be much cheaper then a regular ultrasound machine, about 1/50th of the cost, that means hospitals could scan newborns with this to check for CHDs and the price of the test would be way cheaper! Now we just need to get the government and hospitals to implant the idea of using to scan for the World's Number One Birth Defect and Killer, but I know my tight CHD Community is going to come up with something so this small device saves LOTS of lives! I'm excited about it!

Ok, that's it for now! Plass on the information about this device if you can and start thinking about how to get it in your hospital to scan for CHDs.

Thank you everyone for the much heard prayers, messages of support, and e-mails. It ALL means so very much to me! Please know I'm praying for so many in the CHD world!

With LOTS of Hope, Love, and Faith,

Friday, May 28, 2010

CHD Awareness Bracelets!!!

Ok, I'm offically CRAZY! I bought 400 (made a mistake on my status) CHD Awareness Bracelets.

**I have alot of Medical debt, bills, and have college bills to pay for, so the money I make from the bracelets is going to that.**

I will have TWO sizes of bracelets: Adult and Child I have a limited supply of Child coming though.

I will have TWO different styles coming in Adult sizes: 1.) a lavendar color bracelet with a purple color fill 2.) a teal color bracelet with a lavendar color fill Child bracelets will be a lavendar color with a teal fill

Writing on ALL bracelets: On the front: ♥Hope~Love~Faith~4~CHDs♥ On the back: Spread CHD Awareness!!

PRICING: $5 dollars for one, but if you buy 4 or more they will be $4 dollars each **This INCLUDES shipping in the US! IF you live OUTSIDE of the US then it will be more money... wish I will let you know SOON!**

PAYING: I will set up a Paypal account on my blog soon and post it on my status when I have it set up BUT if you'd like to pay by check or money order then message me I will take names and orders now (just leave a comment here), to ensure you will get bracelets.


Thank you for the prayers and messages of support!! Truly means alot!! I'm hanging in there!!

With LOTS of Hope, Love, and Faith,

Thursday, May 27, 2010

An Update from California!!

Since, I’ve been in California I’ve been doing ok. I’ve had a few panic attacks and have moments were I feel very alone. It’s hard moving so far away from your family, have a three hour time zone difference when making phone calls with my family, not getting any mail, not having a job, and having other frustrations.I’m slowly learning to adjust and trying figure out what I’m going to do in California. I’ve been looking at getting a part time job and trying to get involved with the CHD Community over here. I’m working on getting online classes set up for the fall and just trying to enjoy a new chapter in my life.

Last week I was feeling pretty crappy. I was having a hard time breathing, with chest pressure, and my heart rate going a bit crazy. I called my cardiologist and had them up my dose of my Beta-Blocker. Two years ago it was upped by my other Cardiologist, but I never took it. Well, by the time I got the new dose filled I was starting to feel better and my heart rate was fine. I looked at all the side effects of the new dose and again (like 2yrs ago) decided against taking it. To me it’s not worth the risk. I’m calling my cardiologist back sometime this week to let them know. I think I was wrong to ask for a higher dose, I should have just gone with a holter monitor haha. Anyways, this week I’ve been doing a lot better, feeling better, and my heart rate has been fine. Go figure. I have a feeling a lot of it is allergies and mine have been worse since moving to California.

I like it here in California, I feel independent and I feel more grown up. The loneness is hard though and I want to do something to occupy myself.
I was going to design and sell some silicone CHD Awareness bracelets; had my heart set on it but I don't think I can do it… Most of you don’t know this because I keep a lot to myself, but here it goes… I’m living off of school loans, I have no real money to my name. I have no car and I’ve never had a job. I’ve tried many summers to get a job with no success and it doesn’t help when you have no car, my driver’s license is useless right now for the most part. My parents have been divorced for 4yrs now. Both struggling to keep afloat money wise. Without my pell grants from the government I would not be in college. Money is very tight for me, like if I didn’t live with someone with an income I’d be living on the streets! I don’t have good health insurance because I can’t afford it! I’ve tried to get Medicaid disability, but got denied twice and I had no money or time to go further. I have medical debt collectors up my butt and I don’t bother answering the phone calls or opening up the bills anymore. I’m looking for a part time job, but again it’s not looking good. Most of what is open you have to be on your feet all day or lift things which is totally out of the picture. I thought if I could order and sell some CHD Awareness bracelets I could pay some bills to stay afloat, but I'm still seeing if I can even afford to do it! If I did do it I don’t want the CHD Community mad at me because I’m not donating the money. Oh how I wish I could help my parents and everyone who is struggling, but I can't even help myself money wise right now! Ugh! I pray for my parents and my family and the CHD community that whatever money troubles they have that they will get through it!

I want the CHD Community especially CHD Parents to understand that it will never get easy living with a CHD BUT we CAN succeed and live a GOOD life, but if we don’t have some kind of support it will be very hard! The economy has hurt everyone in some way, BUT the adult CHDers have been hit hard! I don’t give off the impression that I’m struggling with money, but I am. You add money struggles with stress to a complex CHD and you have a mess! I’m DOING OK! I AM! I have a VERY loving family and a VERY loving boyfriend who without him I would be lost (and he is supporting me money wise right now, for that I’m VERY grateful). I just wanted to let you all know that I’m doing pretty good despite some difficulties. Living with a CHD is not easy minus other issues! Unless your a CHDer you will never know how it feels to go to bed scared yet not want anyone to know. To be thankful when you wake up because your alive. To sit at the Cardiologist knowing that it's your life on the line. To feel your heart, see your scars, take you meds, sit to take a breathe, to hope that something sudden doesn't happen during the day, pray that you get to see a long life. It's VERY hard! And unless your the CHDer you won't know. Don't get me wrong, I know from hearing my parents and seeing my parents that it's SUPER hard being the CHD parent. Watching your child in pain and having SO many fears, but it's different than being the one laying there. To ALL CHDers and CHD Parents being close and supporting each other is NEEDED because you will both cope differently.Being the CHDer or the CHD Parent will NEVER been easy, but it can have some VERY rewarding moments and ALWAYS has blessings in store! :D Never loose Hope and ALWAYS cherish each moment!I would LOVE to do something for the CHD world and spread CHD Awareness! That’s my passion in life! For now I will keep living day by day, being ever so grateful for what I have especially my health. I will continue to share my CHD Story and help others as well as finish my new CHD Awareness Montage.

Ok, I'm ending my rambling now. Sorry! Again, I'm doing FINE! I'm haning in there like I always do! I will continue to look at the good and not the bad! I know God is with me! :D

Please know I’m keeping MANY people in my thoughts and prayers! ALL of the messages of support, prayers, e-mails, and gifts mean SO MUCH to me! I'm VERY grateful for ALL of it! THANK YOU! You guys are Awesome!

Heart Parents: Stay Positive! Know I'm thinking of you and your kiddos. CHD kiddos, CHD adults, and CHD angels keep me going!

Before I go an adorable picture of my niece and I before I left for California as well as a pic of my little bother and I before I left:
Auntie Lauren Loves and Misses You Baby Girl!!

Aaron, Your Big Sister Loves and Misses You!!

With LOTS of Hope, Love, and Faith,

Tuesday, May 18, 2010

An Overdue "Thank You"!!

Over the past two months I have received some gifts from some very special and kind people in the CHD Community. I have also received SO much support, love, and friendship from MANY others in the CHD Community. SO here is a post to say “Thank You” to those people and a general “Thank You” to everyone else! I WISH I could say “Thank You” to EACH and EVERY one of you PERSONALLY!

The first one is a “Thank you” to Anne Marie for sending me this CHD sweatshirt and CHD Magnets (which I don’t have a picture of.)

“Thank You for thinking of me Anne Marie! It made me smile!”

A “Thank You” to 43yr. old CHD (Tricuspid Atresia) survivor, Steve, for sending me this really cool CHD Coin!

This is the Front of it.

This is the Back of the coin.

“Thank You SO much, Steve! You’re so thoughtful!”

And a BIG “Thank You” to Heart Mommy Tamara Lemus!!
A month ago on a Saturday I came home early in the morning (7am) to find a brightly colored box with Hearts on it from her! I just got done having a rough week and was going into another rough week with finals and moving to California. This was the best pick me up! Made my day and made me cry!

I sat down and opened the box… this card was on top:

I read the inside of the card, which she wrote a nice little note which made me cry.
Then, I took out the brightly colored tissue paper and I found these:

I started crying harder! The beautiful shirt and tote bag had my blog, carepage, and personal motto on it: Hope~Love~Faith


In the card she was thanking me for all I do for the CHD Community and wanted me to know that Heart parents really appreciate what I do and I give lots of hope and inspiration! WOW!

“Thank you from the bottom of my Mended Heart, Tamara! This meant a lot to me!”

***I know I touch A LOT of lives in the CHD Community, but I NEVER ask for anything in return! Just knowing I touched someone’s heart with my story is enough for me!
I have been SO touched by the kindness of not only these people but EVERYONE in the CHD Community! You guys have done SO much for me! From gifts to messages of support that get me through a lot of days and make me smile! To much heard prayers and putting me on prayer lists (and letting me know, which touches me heart so!) to e-mails that make me smile as well! To offers to help me out financially (which thanks but it’s ok. Your so sweet though!) to a Heart mom who is sending me a pulse ox (Deidre, THANK YOU SO VERY MUCH!!!) to friendships that I’ve made on and OFF the computer (Mary, Gina, Melonie, Cortney, etc I’m SO happy I’ve met you; You guys are amazing!)that will stay with me forever! ALL OF IT WILL! ALL of it warms my heart! Please know that even if I don’t get to reply back to everything I receive, it means SO SO much to me! You guys have given me so many smiles, support, prayers, love, and strength that I don’t know how to thank you! All I ever wanted to do is to share my story and give hope, but by coming into the CHD Community 2yrs ago I have received SO much more than I ever expected or deserve!

THANK YOU to ALL of the Heart Parents and CHDers our there for sending support, prayers, and friendship! Without ALL of you I would NOT be able to do what I do! I will NEVER stop telling my story and spreading CHD Awareness! Because of YOU and those CHD KIDDOS I have a passion; I have a reason to FIGHT and to live my life to the FULLEST!! THANK YOU!!! ♥

THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!