Tuesday, January 26, 2010
I've been asked some questions lately that I think I should answer for all. I know there are a lot of questions concerning Jacob and what is going on. So, I will start with the basics. The first thing is that he is our baby boy and we love him already. We know our time with him won't be as long as we want but, this is his mission and we are trying to do the best by him. In November we went to find out if we were having a boy or girl and we found out that we are having a baby boy. After many specialists and doctor appointments later this is what we know. Our baby boy has been diagnosed with a bone dysplasia. There are at least fifty different type but, ours is known as a lethal form. The diagnosis that they are leaning most towards is probably Thanatophoric Dysplasia. Although we have been given another possible option of a diagnosis this one is the most likely and both diagnosis' will have the same outcome. We have opted not to have the Amniocentesis (needle stuck into the mother's belly to obtain some amniotic fluid) for a definitive diagnosis because deciding between the diagnosis' is not important because the outcome will be the same. We will take a sample of cord blood when he is born and do the testing then. This type of bone dysplasia effects only the long bones. (Long bones consist mostly of your arm and leg bones and the rib cage) It is nothing that Reed or I gave him genetically but, something he did when replicating his own genes(they call it a 1 in 30,000 fluke). He is missing that tiny portion of the bone gene that tells him "how long" to make the long bones. So, this will effect his arms, legs and rib cage. He has every bone that you are supposed to have but, on the long bones...his body doesn't know how long to make the bones. The reason that this is a lethal form is because it will affect his rib cage. His ribs don't know how long to grow so they stay very short. This does not allow space for the lungs. On the ultrasound...his heart takes up the space available inside his rib cage....therefore there is not space for lungs. I oxygenate him right now through the placenta and cord but, once he is born...he won't be able to oxygenate himself. There are tons of stories on the internet of babies living minutes, hours to a few living a few days. We are praying for as much time as we need, to meet him and let his brothers and his sister meet him. I want very much for him to be born alive (there are always risks that they won't make it to term) but, in general...the specialists say that they usually are born alive. We are praying that we get that time with him. He will look a little different but, I've never known a little spirit work so hard to obtain a body. It's hard to think that this living little person inside of you won't be able to stay with you. I am trying really hard to understand his mission and being his vessel to obtain a body is humbling. We love you Jacob and pray that we get to meet you. I hope this answers those questions about our sweet baby boy. We love him so much and want everyone to pray we get that precious little time with him.
Posted by Cassy at 1:39 PM