positive heart baby stories please !!! lets look on the bright side

Clare - posted on 11/10/2010 ( 16 moms have responded )

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I'm delighted to say that 9 months post my sons Glenn Shunt procedure for tricuspid atresia and hypoplastic right heart + other defects !!, his cardiologist says he has excellent heart function and is doing great!!! Final surgery when he is 3 years old..... Yippeee well done Tristan... so proud of ya !!xxxxxxx

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Amber - posted on 08/10/2011

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my son who is 14 months now had open heart surgery a year ago for a bad heart defect called double oulet right ventrical...and he had a hole in his heart...It was a very difficult time for me but I am happy to say he is doin great now!! we were in and out of hospital for a month or so before his surgery and about 6 weeks after..they thought he was goin to have to get a series of surgerys liuke one at 3 months and then 2 more when he was a little older but they ended fixing his little heart in one surgery which took 9 hours! he is a chunk now and doing everything a baby his age is suppose to do! Good luck to all you moms with heart babies! They are strong little souls :)

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Vanessa - posted on 10/23/2012

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My son had surgery at 16 months old to repair a narrowed aorta. It was the hardest thing that my husband and I have ever gone through. No one really knew what it felt like to see their tiny one-year old in a big hospital bed, hooked up to all these machines with tubes sticking out of him. For a long time after his surgery, I had an irrational fear that his heart would just stop working one day. I slept with him next to me to make sure that he was breathing. It was awful. That was the scariest time in our live, but it’ll be almost 2 years in February. Now our son is an amazing, energetic, and active 3 year-old little guy. He goes to preschool, loves to play outside, and is just a wonderful little boy. I wish that someone would have told me 2 years ago that he would be okay. That it gets better, and it becomes less scary every day. He may need to have another surgery one day, but at least next time we’ll know what to expect!

Angela - posted on 10/18/2012

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My daughter Riley is 3. She was diagnosed at birth, we had no idea. First surgery at 5 hours old followed by OHS at 5 days old. Today is she a ball of energy and doing great. We are monitoring a leak since 18 months and it has not gotten any bigger, She is my hero!!! :) Riley my little her has D-TGA, Aortic Stenosis, Hemophilia C.

Whitney - posted on 09/02/2012

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Your posts are so wonderful and I feel so blessed when I read them. Thank you for your positive attitude :)

Nikki - posted on 05/10/2012

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I have a Tristen as well - he has DILV, VSD and Pulmonary Stenosis. His bi-directional Glenn was 4/24/12. Spent 3 days in the hospital and came home doing wonderful. His final surgery will be when he's 3 as well.

Clare - posted on 05/02/2012

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I think myself that heart babies can be picky eaters/feeders. My son Tristan now 2/12 has always been picky. He eats when he wants, took a long time to get him off toddler milk, he picks atfood throughout the day. His cardiologist says he wont "starve" and his average weight for his age. hope this give you some insight.
clare x

Odaly - posted on 04/24/2012

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Glad to hear all the success stories!! My son has Double outlet right ventricle-vsd- and pulmonary stenosis with a transposed vessel. He is but 7 weeks old and havent heard anything about surgery yet-but just reading all the success from mothers facing the same challange helps to face whats coming. Any advice would be greatly appreciated. I do have a question, he feeds off the bottle and his feeding varies greatly. One day he will feed every 3 hours 2-3 ounces and there are days(not my favorite) when he will have 1 ounce of milk and then not eat for like 4-5hrs to only drink 2ounces. Anyone experience this?

Mélanie - posted on 01/10/2012

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Well, I celebrated my son's 3rd birthday this december! He is an ACTIVE boy who had open heart surgery at 3 months old for VSD and pulmonary stenosis correction.

Alice - posted on 04/07/2011

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How soon after surgery do babies bounce back? When did you guys get to take your kids back home? Was it difficult post surgery, what are the things one need to look out for?

Clare - posted on 03/31/2011

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Kelly, Sorry with such a late reply. Its a real mix of feelings finding out your baby has a heart problem, I luckily found out while I was pregnant so i was prepared for all worst case scenarios. Because Im a nurse, all the docs, specialist nurses expected that I'd know everything about my son's condition, which SO wasnt the case, Im an Adult Nurse i had to keep telling them! We had a fabulous team of cardiologists, surgeons and nursing staff available to us, it was very difficult to listen to them talk about what the surgery involved and the risks etc... But I put all my trust in them, mainly because it was out of my hands, I could not fix my baby but they could ! He's nearly 2 now and a real little man ! His heart does not seen to prevent him doing anything any other child his age does, he is on no medication, and is very healthy from a cardiology point of view. Sometimes he gets tired if he runs around for too long but he kinda knows to relax and then continues.If you have anymore questions please dont hesitate to contact me. Best of love and luck . Clare (DUBLIN)

Kelly - posted on 02/18/2011

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I just learned that my baby girl will be born with Tricuspid Atresia and I'm so scared for her. We've been to the pediatric cardialogist and it seem like they are confident she will need only the 2nd & 3rd surgeries of the series. they are expecting her to stay in the ICU for a week after birth and then be able to go home with us. She will return to the hospital for her first surgey around 3 months depending on her size and status. I don't know what to expect. Can you offer me any advice on how you felt pre & post surgery and how you reacted to everything that was happening to your little one.

Clare - posted on 02/10/2011

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great to hear such nice and encouraging news about all our babies.... they are special kids and have alot of life to live...and alot of people who love them...

Sandra - posted on 02/05/2011

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Wow... That's great news and ur son sounds alot lile mine. My sons heart is on the right side too. His Dr.s are hoping to wait until after he turns 4 for his last surgery, but it could be as early as after he turns 3. He just turned 2 on Feb. 2 and we're looking forward to a great year :-) Good Luck!

Clare - posted on 01/04/2011

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my son had his op end of april for TOF he is now a healthy happy boy.. charging about, picking fights with his dad and has a huge appetite!!!

Amanda - posted on 12/31/2010

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How wonderful!!! My Kaiden (1 y/o) is now 1 year post op from a TOF and pulmonary atresia repair. He is doing amazing!

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