Trisomy 13

We received the results from the rapid genectics test. Evan has Trisomy 13. They are doing a more in depth test that we are still waiting for to determine exactly what is going on with that 13th chromosome, but we have some basic information about Trisomy 13. We do know that he does not have the huge cleft lip and palate that most trisomy 13 babies have and his brain is fine. He does have some major sight issues and while the doc would not come out and say he is blind he did say he would be severly sight impaired. He does have an extra pinky on both hands, but they have no bone and are connected only by a vein. They told us not to be alarmed if they just fell off soon. He also has an extra pinky toe that is attached and probably staying. He hates to have his diaper changed, but loves to be held. The last part has nothing to do with Trisomy, but just makes me happy. We do know that Evan is a gift from God. We may have him for two week, 7 months, or 5 years. We do not know how long God will let us have him here, but we will take each day we have and treat it as a gift from God.

When I woke up yesterday (Thurs.) I was so swollen my eyes would barely open. The docs and nurses had tried to get me to sit down and lay down most of Wed, but I pretty much stood at his bed and did not drink or eat like I should. They figured out how to get me to sit down was to just put a baby in my arms. Actually one of the times I went to pump Sean told the social worker that it would help if I could somehow hold him and she arranged it. I don't know how many hours I sat with Evan in my lap and my feet up yesterday, but I am not nearly as swollen today. Evan really loves to be held also, Sean holds him while I pump. It is a mess of wires and tubes, but they have done whatever we wanted and untangled wires and rearranged things so we could hold our son. He gets pretty uptight and draws his knees up and his shoulders are just stressed but when we hold him he relaxes. It also does my heart good.

Thank you for all the prayers and calls and emails. Talking is really hard right now, but I cannot tell you how much it means to have constant reassurance that he is being prayed for and people care about all of us. If you are sending us messages on facebook we are getting them through email, but we cannot respond because Childrens has blocked facebook. We have not told Grace and Garrett yet. We are meeting with some people from the hospital today who will help us figure out how to explain everything and prepare them for what is going on.