As expected the results only confirmed what we learned last week. Yes, our baby girl is ill, most likely with Spina Bifida. The results showed a high level AFP - average is 1.0 and mine was 7.09. I was told that the number is not indicative of how severe the illness is, just confirmation that she has it.
I wish I could say that this latest news didn't bring on another round of tears but it did. I'm sad, actually very sad and I'm sort of confused why. We knew she had this, we have been working through it all week - so why I am I SO upset all over again? I do however have a different perspective on genetic testing now. I am glad that I got tested. I am glad that we are now able to start preparing for our sweet babies birth and the critical care she will need. Had we not known about her illness until her birth I am confident that her long term prognosis would look very different than it will look - I am going to make sure of that!
I am now on a mission now to find the best OB, Specialist and Neuro Surgeon to take care of our daughter. I will most likely be changing OB's soon and interviewing Dr.'s to ensure that I have the most qualified person looking out for the health of our daughter.
We continue to ask for your prayers and support. I am so up and down all the time, it's hard to believe that this is what it's going to be like for the next few months. Also, any doctor recommendations are welcome. My next appointment (current OB) is April 9th and my next ultra sound (specialist at Magella) is April 16. Until then..............
Thursday, April 2, 2009
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This baby girl is very lucky to have you and Brandon as parents. Hopefully you will get more answers when you connect with the specialists. Know that you are in our prayers. Love to all, Brenda and Tom
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