September 29

We saw the neurosurgeon today, and decided we would have to have surgery to put a shunt in the ventricles of your brain. Going in, my gut told me this would be the case. Still, I was hoping I was wrong.

I brought the films of your CT Scan from June of 2008 and the doctor and I looked at them together for the first time. When he pulled up the pictures from your MRI a couple weeks ago, I knew at once it wasn't good. The fluid in your brain has increased significantly--even shockingly. His first question was about the stability of your heart. I knew what that meant...

There are two reasons you could have so much fluid in your brain. The first is that you were born with too little brain mass, or are losing brain mass due to atrophy. In this instance the fluid would just be filling in the empty places as it should. The second is just congenital hydrocephalus. In this situation, there is a malfunction that causes too much fluid to build up, putting pressure on your brain. This can cause a number of problems including developmental delays, headaches, poor vision, nausea and vomiting--many of the issues we face already. Without having seen the first CT Scan, our doc thought the reason would be the first, and that his recommendation would be to leave it alone. He changed his mind quickly when he saw the older films. I asked him which of the two options I should prefer, and he said that our situation is a better senario. It can be treated. But while it is clear that surgery is the best option, it isn't a sure fix.

There is a 5% risk of complications. Infection is always a possibility. I am more concerned about your "brain collapsing" as he calls it. When the fluid is taken away, the brain could pull away from the skull, causing blood clots, strokes, and more surgery. Logic tells me that the risk of this happening is most likely proportionate to how much fluid is drained, and in your case it is a LOT. Plus, our doctor can't guarantee this will fix the problem, even if surgery itself goes perfectly.

Some possible good other than the obvious release of pressure on your brain, is that maybe it will relieve some symptoms that I have always attributed to SLOS. This may be a long shot, since these symptoms are a part of SLO, but my hope is that it will help decrease the vomiting, increase your vision, and help your motor skills develop more quickly. Regardless, I bet it gets a lot easier for you to hold your head up when it isn't so heavy. It is clear to me now why we haven't made much progress in this area. You can't build your muscle strength in order to keep up with how quickly your head grows. And of course, you can't learn to sit or do much else until you have that head control down. And maybe too this explains why you still hold your head back so far. Since your head protrudes towards the back, all the extra weight is back there. Poor baby, and you try so hard. I wish I had thought to look into this sooner.

When we get news like this, I usually take it pretty well for awhile. This time I was ok until until a couple hours later when I was sitting in the back of the car with you on our way home. I was reading some literature that they sent home with us, and there were pictures of a brain with normal ventricles and a brain with enlarged ventricles. That's when I began to puddle up. Even the pictures of enlarged ventricles look normal compared to what I saw of yours.

I really hate that you need to have this surgery. You have always done beautifully for past operations, but it is never easy on you.

I hate that they will shave half your head--that's a stupid thing to care about, I know. But you are my baby girl, and I just do. We both enjoy fixing your hair--I wish you would just let me do it by myself though, cause you wind up pulling it out.

I hate the timing. There is always a fear with any surgery that something could go terribly wrong. But this time I have the added realization that my devastion might be harmful to your brother. At the same time, I know we need to do this before he comes because then I would have to chose between leaving you at the hospital or leaving a newborn baby at home. So we will probably schedule the surgery within the next couple weeks.

I hate that this is so random and unexpected. I have asked the other SLOS families, and no one else has this problem. I can't believe that in addition to having every characteristic associated with SLO, we are now making up our own. So frustrating.

After a good cry, it was time to move on. No sense in dwelling on the way things are. All I can do is enjoy my time with you, do my research, and pray. Already it is a God thing that we even discovered there is a problem. You were having your "freak out" sessions and I suspected seizures, so we scheduled the EEG's and MRI. But that was months ago, and you haven't "freaked out" since. If it weren't for the seizures, the MRI probably wouldn't have come up until your head was obviously too large and who knows what may have happened in the meantime. I guess God's timing really isn't so bad.