Congenital Heart Defect..anyone in the same boat?

[LilyRian]

Hi girls, ive been on BNB a while but had another profile and im sure i posted in here at some stage but here i am again lol. I have a 5month old son who has Pulmonary Atresia, its a congenital heart condition that means his main artery to his lungs is completely blocked and one side of his heart is smaller than the other. he also has a hole in the bottom part of his heart which will need to be repaired. he has had 2 surgeries, one open heart and one keyhole and will need lots more. he is small for his age, just 12lbs but is funnily enough a chubby lil thing! he takes about 4 oz of high energy formula every 3 hours and 2-3 spoon feeds which im really grateful for. somedays his breathing is quite laboured and i can see his lips have a bluish tinge to them which indicates his oxygen is getting low and he has to rest alot. I understand his condition completely and have come to terms with it but id love to speak to anyone who has been going through something like this...the surgery and the feeding difficulty etc. thanks to all and hope your little ones are doing ok xxxxxxxxxx

 

[vixxen]

hi Lily, my daughter was born also with heart defects she has multiple VSD's.
She had her 1st surgery in octomber which was the pab procedure she will be having more surgery when she is bigger.
My daughter is really struggling to put on weight even with her high calorie milk and is not managing much more than 50 mls at a time.
Its still all new to me especially her size, at 15 weeks they still correct her by 3 weeks as she was born at 36 + 6 ,even then she is still on the less than 0'4 growth line.
Did you know before your baby was born his health issues?all i know was that my baby was IUGR and was having blood flow issues resulting in me needing over 40 scans which still didnt pick up the holes

 

[Mommy2Dallas]

Hello,

Although I do not know what you and your daughter are going through I know someone who does a friend (or well someone I know) has a daughter named Winry who has CHD/HLHS I have a link to her page in my blog (in my siggy) just go the page that says "prayers for winry" and click on the link provided in there and it will bring you to Winry's page. Her moms name is Chelsea.