Justin
When I found out I was pregnant with my third child that I never that I would ever have to go through this. I had my easist pregnancy of them all. At our 19 and 4 days u/s we found out I was having my third boy. But we never found out anything was wrong with. At 39 weeks I went into labor went to the hospital at 8am and he was born at 10:10 am same day. He weighed in at 8.5 lbs 21 inches long. He was blue...the doctor told me he was cynantoic and it was common and it would go away. The next day he was blue again, the nurse told me he was too cold and wrapped him up two times. Later that night the nite nurse came in to take him to nursey to weigh him. Well I have drifted off and didnt realize how long he was gone, I got up and walked down to the nursey when they was scrambling to save him. He was dusky and not breathing very well. The nicu doctor came and told me at first he was septic due to my group b strep. I told him he was wrong and find out what is wrong. Then came back for a second time and said it was meatabolic and was transffering him to another hospital. At this time I was asking if it was his heart due to I have a newphew with wpw syndrome. They assured me it wasn't his heart. Next thimg I know I heard a code blue over the intercom in nicu and the doctor came back again saying it was his heart and was being transferred to miami children's hospital. I told the nurse to have me discharged me right now. So we drove down there as fast as we could. The helicopeter was already there and transferring him into nicu. The longest 3 hour weight to get his hlhs diagnosis. I was completely devasted hearing that he had this rare heart defect and needing these major open heart surgeries. I was angery what did I do wrong in my pregnany. Seeing him hooked up to all those machines and so helpless I was devasted even more. At day 4 he has his norwood procerdure down. The longest 8 hours of my life that then turned into 11 hours because of bleeding for the aoart arch repair. We had drove back home that nite to come get our other kids. He did a amazing job recovering. He scarred us several times but that comes with this special heart. 3 1/2 months old he went and had his first heart cath to see how the norwood b/t shunt was doing. We had found out he had out grew his shunt and had his surgery done 3 weeks later. He had another aorta arch repair and the glenn. In was only in the or for 4 hours....then came back looking great. Then the world came crashing down. He has serve bleeding coming from the incision and blodd pressure problems. For 3 hours i was pacing the floor......they gave hime some medicne called factor 7 I think to stop bleeding and he stabled out. Some up and down came along and 9 days later we was home. He's now 2 years old enjoying being a toddler. He amazes me every day. We awaiting the fontan but he may not be a canidate due to his tricupsid valve leakge.
Amanda
Mom to Justin Wise 5-27-2007