Thursday, October 22, 2009
Many of you already know our story and many of you don't. This is just another post on our family blog which happens to be another chapter in our life. Seeing how it is life; it has it's messy moments so we need to cherish the good and maybe the not so good moments to realize what is really important.
When we found out we were having a little girl we also found out our little one has hydrocephalus. Hydrocephalus is basically when there is too much fluid present in the brain. When we found out, we were at 14mm of fluid which is considered moderate. At the last ultrasound we found out we were at 24 which is significant. It can go up and it can go down. However the more liquid that accumulates, the more that her brain tissue gets pushed further and further against her skull. This is when it gets serious because it could be causing brain damage. The doctors cannot go in and fix this problem. It is something that has to addressed at birth. She will most likely have a shunt inserted in her brain either the day of her birth or a couple days after and it is to help the fluid drain. We were basically given a 50/50 chance. Seeing how this can affect each child differently the doctors basically shrug their shoulders and say "You may leave with a perfectly healthy child or you may leave with a vegetable." You really can't tell how much her brain will be affected till she is at least 18-24 months. Because of all of the fluids, her head is growing more and more to accommodate it. The chances of her being born with an abnormally shaped head are pretty good. However, like anything we have encountered in this process it is 50/50. She may come out looking and acting perfectly normal or not. You just never know. I will most likely have an ultrasound every 2-4 weeks and the more we keep watching this, the better will be prepared on what we are dealing with. Typically, hydro babies are born via c-section and usually between 32-36 weeks. Due to the size of their heads very few go to 40 weeks. I am going to try to keep her in as long as I can because I feel that a preemie baby just has to survive but a preemie hydro baby has to do that and more.
There is no one to blame and when you roll the dice on becoming a parent you are never promised a "perfect" baby. I have joined a Hydrocephalus board online and it has helped us prepare for what is to come. I enjoy reading their stories and seeing their children grow. It gives us hope and hope is pretty much what we have to hold on to right now. We can only hope that she is not in pain and that she will be a perfectly healthy child. I think as soon as I can see and touch her, the more prepared I will be to help her. She is counting on us to be there for her and we as a family will have to adjust to our new life. I love our doctor and feel very confident in our quality of care. He is a father of five so he knows how devastating this is for us.
Our family and friends have been really supportive and it make us thankful that she will have us and them to lean on.
**Lexie was born with severe hydrocephalus and is missing about 1/4 of her brain. Besides those two things she is doing reasonably well. Her hearing and eye sight seem to be fine and she is developing about 4 months behind. She is is the happiest baby and brings joy to everyone**