Brady update - 7/28/2010

Yesterday was a good day. It's been nice to get back to work and focus on other things to keep me distracted. I also got a lot of good information from the T13 Yahoo Group I joined. The women in that group are so supportive and helpful. It really makes me feel less alone in all this, since this condition is so rare and there are so many unknowns. I found out that there are state and county programs that will provide assistance with getting care and medical equipment for Brady for anything not covered by insurance (although I also called our insurance company and it turns out that our insurance is really great and seems to cover everything I can think of at this point). There are also groups that support disabled children that can help out as well.

From reading people's stories on the T13 website, I've also learned about some of the various treatments and care that need to be done for these children, which is really helpful. Finding out about all the stuff we might have to do for Brady is making me realize that I really, really want to do this stuff and take care of him. It doesn't scare me, it motivates me. When I first found out about Brady's condition, I was almost afraid that he would live because I didn't know if I would be able to handle being a good mother to a child with special needs. But I don't feel that way anymore. Now, I really feel that Brady will make me a better mother and person, and maybe that's what God's plan is for Brady and us. Maybe Brady's purpose in life will be to show me and Paul and everyone who meets him that there is more to life than material things and work and all the stuff that just seems so insignificant now. I see now that this might be a blessing in disguise. God works in mysterious ways :)

I also spoke with Diane (Genetic counselor) yesterday and she is going to have a woman (Lisa) from UNC Center for Infant and Maternal Health call me this week. Lisa is going to be the one to help us figure out plans for burial as well as get into contact with UNC's NICU, pediatric cardiologist, and pediatric neurosurgeon, so that we can start planning for Brady's treatment when he is born. So I'm really excited to get that process started. I've also decided to transfer my OB care to UNC, so that I am seeing the doctors who will deliver Brady at UNC. I think getting into contact with these people will help me feel even more prepared for the situation, which will help me feel less anxious.

For some reason, I have this feeling that Brady will make it to birth. I don't know why, but that's my feeling right now. I had similar feelings earlier in the pregnancy about Brady's health - for some reason I just felt like something might be wrong. Unfortunately, that feeling was correct, but hopefully that means that this feeling is correct too :) On Friday, when we met with the perinatologist at UNC, I asked what could cause Brady to die in utero. She said she thinks it's usually caused by a failure of the placenta.

Basically, T13 can cause internal system issues (especially the nervous system) that can't be seen from an ultrasound, or even from tests done after birth. Because the placenta has the same genetic material as the baby, the placenta may fail to perform a critical function, causing the baby to die in the womb. The baby's physical abnormalities at this point shouldn't cause him to die, but the other problems that T13 could cause could lead to his death. But since we have no idea if this will happen, I am going to continue operating under the assumption that he is going to make it to birth and plan for his treatments at that time. Once he's born, it will still be hard to tell if he will make it or not, but I really feel that getting treatment for his defects will give him a much greater chance of surviving, so that's our focus for now. I pray every day that he will make it to that point.

Yesterday morning I got the full results from the amnio and it turns out that it is full T13, not translocation, so it's not hereditary, which is really good. So no real surprise there, but it's good to know the results.

I just love looking at the ultrasound pictures of Brady. Isn't he just so wonderful and cute?!? I look at them every day and that makes me feel closer to him. I wish I had an ultrasound machine, so I could look at him every day. I just can't wait until I can feel him. I'm almost 20 weeks, so hopefully I'll feel him soon, but since he's a couple of weeks behind in size, it might not happen for a few more weeks. But I've definitely gotten bigger in the past week (see pic below). I am consistently measuring 37" now and most of my shorts aren't fitting anymore! I have to unbutton the top button in order to not be in pain when sitting down :) So that's really great news! I love to see that Brady is growing.