A Heads-up

I got to speak with the Moore family this past weekend. I was given their name and number through a mutual friend. Their first daughter was born with the exact diagnosis as us over 18 months ago. She was able to give us a heads-up about some really important things that I thought I would share!

This family comes from Mobile, but they too were scheduled for delivery in Atlanta. They delivered at a nearby hospital and then the baby was transported to the Sibley Heart Center at Children's Hospital of Atlanta as soon as a bed became available. She gave me the names of her doctors (whom she recommends highly) so that when we have to start setting up our MD appointments up there, we will be with good people. Their baby was scheduled for the first of the three Hypoplastic Right Heart Syndrome surgeries on day seven of life. She had the surgery and came through it fine, which is comforting news for us. UNFORTUNATELY for them, they discovered their baby had an additional defect which went undetected until the first surgery, and she required a heart transplant. Thankfully, they did receive the transplant and their baby girl is happy and healthy today!

Assuming we don't have a heart transplant, our first weeks will go much like theirs. We will schedule a delivery in Atlanta, and be transported to the Sibley Heart Center ASAP. The first surgery (called a BT Shunt) will take place within the first 7-14 days of life. The Moore's were able to fill us in on some details we did not know about. For instance, Chris and I will be allowed to stay at the Ronald McDonald House next to Children's Hospital, which will be an extreme help financially. They were also able to give us a warning about the types of medicine and medical equipment we will likely be sent home with. For instance, most of these babies don't get to practice 'eating'...they lose the suck/swallow reflex that all babies are born with. So we will likely be sent home on a feeding tube that will last until the baby can pass a swallow study (to be sure he isn't aspirating his food into his lungs). Also, these babies have long term eating problems, as far as absorption of nutrients. The Moore's daughter is 18 months old and doesn't weigh more than 20lbs. Development isn't a problem, it's just size.

I didn't think I was too affected by the 'scary' details she gave us. BUT that night I had a ridiculous dream! I dreamt that by the time we were allowed to take our baby home from the hospital he was 2 years old, and didn't really recognize me as his Mom as opposed to just being one of the nurses and MDs. Then, in my dream, when I had been given the OK to breast feed, I couldn't because we kept getting interrupted or kept having MD appointments. I thought the whole thing was comical at first but I realized that it came from a true fear of missing out on all of the normal things that most other people get to do during their first days with their baby. Trust me though, if I have to bring home a two year old who doesn't know me from anyone else and who eats on a feeding tube for the rest of his life, I would rather do that than not bring him home!

I truly appreciate the help the Moore's gave us, and plan on keeping up with them for more advice as we get closer to planning the big day (which seems like years from now).

~Kathy