When we first recieved the news that our baby had fluid on her brain and it is called Hydrocephalus, I had never heard of it. I went crazy researching and learning more about it. That is when I came across a webpage about a little boy named Owen that was born with severe hydrocephalus. I read his story and learned that Duke University hospital performed a cord blood infusion on him, in hopes the stem cells would help repair some of the damage the pressure of the fluid had on his brain. There is no way to know for sure if this procedure makes a difference, but if there's a chance it could then we felt we were crazy to not do it. So Mike and I contacted Duke so Cayman could have this stem cell infusion too. It was not until all the chromosome and gene analysis from the amnio came back could it be decided if her stem cell infusion could be of help. If she had a defect in her chromosomes or genes I guess her own stem cells would not have been able help to her. But receiving the news that everything was normal we called Duke again and just this past week we recieved in the mail the cord blood collection kit. It was very exciting! I guess when you are a high risk pregnancy you take delight in whatever you can. So we'll take the kit with us the day of the C-section. After she is born they will collect the blood from her umbilical cord, and it will be sent to Duke and preserved there until Cayman is strong enough to make the trip to North Carolina. Owen's webpage about this Cord Blood Therapy explains this procedure much better than I can.
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Hurray!!! I am so excited that you got your kit. Doesn't it make it suddenly seem all very real??? Not that it wasn't real before...but now it's like "this is actually going to happen!".
So what do you think of all that paperwork? I was a tad bit confused and ended up calling and talking to someone in the lab at Duke several times to make sure I was doing it properly.
About Elisabeth's eyes...she does have a tendancy to stare to the right. We noticed that from the time she was just a few weeks old...even before we knew she was blind. She used to have what is called nystagmus..where the eyes would unvoluntarily shake back and forth. It would always happen when they were over to right, but that seems to have stopped. i don't know if all blind babies look off to one direction or if it's just her. It's funny, because if you didn't know she was blind, you certainly can't tell from pictures. It looks like she is staring off at somebody off to the side.
You are so lucky to have a mother who is a nurse!! That must bring great comfort as you approach Cayman's birth and then caring for her when you bring her home. Does your mom live near you?
Praise the Lord! Very exciting news.
I will keep you, Mike, and Cayman in my prayers. Medicine can do amazing things these days. I'm so glad you got the kit! Your beautiful baby girl will be here before you know it :)
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