For anyone who doesn't know, we went to the neurosurgeon today and found out that Annabel is going to have surgery on her skull to separate two of the plates that fused prematurely.
This has kind of been a strange day for me (Kristin). I guess that I went in expecting to hear that she needed surgery and perhaps that is the reason I am not worrying too much right now. I almost feel like I should be worried, but the truth is that I am just not. I am sure that moments of that will come as her surgery approaches, but tonight I find myself being calm and thankful.
We are really lucky to have a pediatrician who did not fight us when we were concerned about the shape of her head. From what I have read, a lot of people have trouble getting referals to see specialists for craniosynostosis because many doctors are not that familiar with it. I am thankful that we did not have to push to get a referal even when the radiologist said that her x-rays looked normal. (I have to say that I am still a little annoyed with the radiologist. Can you refuse to pay if they give a wrong diagnosis? ... probably not.)
I am thankful for the internet and for discussion boards like craniokids.org and the craniosynostosis support board on babycenter.com. There are parents on these sites that are happy to share their experiences and give advice. It is amazing that you can connect with so many people going through the same thing or who have already been through it. I am also thankful for all of the doctors who put up websites that detail how they diagnose this condition, the different surgery options available, and the results that they get. Without all of this information, we may never have pushed to see the neurosurgeon.
We will never know, but Annabel may have been just fine without surgery. It is not certain that this fusion of the skull plates would necessarily put pressure on the brain and cause developmental problems. However, it is so nice to know that we can do something that should prevent problems. We would also hate to see our baby go through life with a physical defect that we could have done something about. It may have gotten more normal as she grows, but most of what I read says that it more often becomes worse as they grow.
Today, I just feel relieved that we actually have a diagnosis and don't have to wonder any more. Jared and I both liked the neurosurgeon that we met with and feel confident with his abilities. He is the chief of service in the pediatric neurosurgery group at Texas Children's. I really think that Annabel will be safe in his hands. Obviously, there is much praying to be done, but I was happy to meet him.
Lastly, going to a place like Texas Children's is a great way to remember just how blessed we are. Sure, I wish that we did not have to go through any of this with Annabel, but there were so many children there who were being treated for life threatening issues or who, even with treatment, would never have the chance at a "normal" childhood. I am so thankful for two happy healthy children.
I partially wanted to post this today so that I could come back and read this if I have a day where I start to panic. I can come back and remember how good God is even in times like this and just how blessed we are.
