Is there a children's hospital near you? If so I would make an appointment with a pediatric cardiologist. Maybe they can help shed some light on the subject. Even if you have to travel it might be worth it to try.
Im truly sorry. My baby was in the nicu for a different reason but while she was there there were 3 cases similar to your case and 2 off them did not make it. All i can say is pray for your baby and for you to be strong and to let be up to god. I wish you the best and stay strong and have faith... thats how i did it!
I've never seen a post do THAT before! Sorry.
I'm sorry you're having to go through this worry.
Have you talked to your doc about a possible heart transplant or other type of surgery? Are they taking a "wait and see" philosophy?