Posted by Justin Malonson
on 3/24/2010, 5:04 pm, in reply to "Re: Baby Drew"
205.179.247.242
Susie,
Thank you for your support and advice on my situation.
I was able to convince a surrounding hospital to provide us with a haberman feeder in order to attempt his feedings. He took the feeder and ran with it. He gained back all his lost weight and didn't have many oxygen level issues, so was sent home with us a few days later.
Thankfully I had done some research and ensured that he had an appointment with a specialist at Johns Hopkins Hospital (Baltimore, MD) that made time to see him a day later. He noticed many of Drew's issues and felt as if he should not have been discharged from his initial NICU stay, and had further testing.
Very long story short, he was admitted that day and under-went a few tests and had his lip-tongue adhesion surgery yesterday. We have not heard back from the Geneticist regarding the sequence/syndrome situation, but will take it all one day at a time!
I admire this little guy, because of his ability to stay in a great mood (except when he's hungry and/or pooping) ...
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