The Waiting Game

Yesterday the doctors determined that Rachel does, in fact, has duodenal atresia (common for children with Down syndrome). That is when the first part of the small bowel has not developed properly and it is not open and cannot allow the passage of stomach contents. Even though with her it was not completely closed and she was still having a trickle flow through, she would not survive as she is without the surgery. The doctors at the Women's Hospital told us she would be transferred to Winston-Salem Brenner Children's Hospital where her surgery would take place and that we would be called when that would happen. I was discharged from the hospital around 12:30 pm and went home. No sooner did we walk through the door did the Women's Hospital call to tell us to come back because Rachel was being transferred. Talk about a hectic rush to get items and get back to the hospital!

Once we got there, they loaded Rachel up in to their ambulance and we made the trip to Winston. Brenner's is a part of Baptist Hospital there and it is HUGE! We felt like we were at an airport. The NICU is very nice though and everyone loved our girl. The doctor that is taking care of Rachel and her surgery told us that he wants Rachel to gain another pound before surgery since she is too small and her organs are too small. He wants her to have a better chance at success. But this means she will be there for another couple months and we have a 45 minute to an hour drive to see her. We've signed up for a room at the Ronald McDonald House and hope to use it during the week when Stephen doesn't work. I know it will be very hard for him to go 3 days at work and not see his little girl. (as a P.S. please donate to the Ronald McDonald House. We never knew what they did until we were thrown in to this and they provide a wonderful service for those with ill children and babies.)

One bright note though is that Brenner's encourages holding and skin to skin contact with your baby. We were able to hold her for a half hour each last night. Today we'll wear clothes we can open in the front so our baby can feel our skin against hers. She is such a miracle. We love when she opens up her eyes to look for us when she hears our voices and the little faces she makes. One day she will be able to come home with us and that is what keeps us going right now.