Without rehashing those moments surrounding his birth, I would tell you that overall my experience there was a great one. However, as I think back to the fact that we were told that our baby probably had a genetic condition, I'm disappointed in the lack of direction we were given after leaving the hospital (aside from checking in with the pediatrician every few days who is amazing!). After the 1st day, Colin was sent to the special care nursery because he wasn't eating very well (poor sucking on the bottle) and couldn't regulate his temperature (the bigger concern). NOW I know that these things are directly related to him having Down Syndrome, but at the time, Chris and I thought that these things were other health concerns. During our stay, I felt as though we were provided exceptional care and everyone was always looking out for us. Colin was such a calm and relaxed baby (barely ever cried) that he quickly became a favorite (the nurses didn't want to part with him when it was time to go). Aside from the pediatrician, no one addressed the possiblity of Down Syndrome with us. We were so lucky to establish such great relationships with the nurses in the special care nursery because they showed us how to assist Colin with feeding and how to bathe him and much more. But, none of them talked about DS.
There was a visiting neonatal physician who quietly and quickly slipped me a pamphlet that had been weathered and seen better days regarding the Early Intervention system in NJ. She scribbled some other phone numbers on there (to this day I still am not sure what they are for) and I stuck it in a gift box with a pretty blue cross we were given (thinking that it would bless us with good news!)
I do have a theory. His diagnosis wasn't confirmed, so they really couldn't talk about it as though it was his definitive diagnosis. However, given his physical traits and health conditions, I'm sure they knew.
Fortunately, thanks to a very good friend, she got so much information for us that I had a place to start when we got home.
I look forward to going back to where Colin was born and hopefully seeing some of those special nurses who took care of us. I do think I was lucky to have been at the hosptial I was at during this experience, but I do wish that we could have been educated more about DS....what to do, where to start, someone to talk to (another mom perhaps? dad?) and to help us not fear the worst.