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.
5 comments:
All the pictures are so sweet! I didn't get much information at the hospital either.I am so thankful for my sister-in-law who called our local Down syndrome association and had info sent to me.
Oh so wish they would have talked to you guys and connected you with the ds community too.
Our hospital told us their diagnosis at Alayna's birth even though we didn't have the genetic test results until a few days later we knew then. They also connected us to the DSG here in town (who visited us within 24 hours) and the director of the school Alayna attends came to visit us and give us info the day after her arrival too.
Yes, same at a Catholic hospital and I could not convince my catholic neighbor that DS is not dire at our block party this year! Just connecting two disconnected thoughts, no real link there but I think the information and help regardless of official diagnosis comes from US. We need to get connections and talk to these parents, in utero and at birth. Are there any stats on being given a false positive DS diagnosis at birth? I'd imagine it's very low.
I finally have an appointment at my OB so we will see how far we get. OB and pediatricians and neonatal units are our first line (after or along with genetic and ultrasound etc.).
Let's get networking! And find people with the time and passion to conquer this mountain. But we will do it, no longer alone!!
Like the I'm Down with You book. New www.downsyndromepregnancy.com. Our army is THERE and growing. The pg website has a sister site about deciding.
I wish we had been given better information when Russell was born...everything was so outdated and scary and no one knew what to say to us except for "how do you feel, are you ok" Which got annoying REAL fast! All the info I got on Ds I had to find myself on the internet!! Anyway...
Loved the pictures on here!
We got no real help from the hospital either. We had a pretty good idea she'd have Ds, but no dr even came to tell us that she did. I had to keep asking if the results of her blood test was back, and that was how we got the 'official' news. We didn't get a referral to the Ds association, to EI, or even a visit from the socail workers. The nurses, who were great, would say babies with Ds may need help with....and that was it.
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