First Day at Home

Our first day at home went well! It was relatively uneventful, which was actually nice after the last couple of weeks. Robert is doing really well. He is sleeping and eating a lot. He slept most of the night in his bassinet. This was nice because Kel and I both got more sleep than we have been getting. I feel a bit guilty as I was only vaguely aware that she was waking up every hour and a half to feed lil Robert. The lack of sleep over the past three weeks finally caught up with me and I wasn't feeling too well. I feel a lot better today though.

Let me try to answer Mark's question about why Robert will still have the shunt as a teenager. You are testing my knowledge a little bit on this one, so forgive me if I get some of this wrong. My understanding is that the fluid in the brain (CSF) is created by the brain. It flows around in the brain and the spinal cord. The fluid has to be present for the health of the brain and the spinal cord. As the fluid flows through all the spaces some of it is absorbed by the body. At the same time the brain is creating more fluid to make up for what is lost. That way it will stay in balance. In Robert's case his brain is still creating fluid like it should but it is not able to flow like normal and so it builds up. The shunt has a valve in it, which opens up to drain when there is a certain amount of pressure. Once the fluid drains down, the valve will close. As the brain creates more fluid, the pressure will rise and the valve will open back up to drain it. The shunt acts as the balance to the production of the fluid, as well as draining this initial high volume of fluid. I am not sure how well I explained that, because I just thought of a new question based on my explanation. :) If the fluid is needed for a healthy brain and spinal cord, and Robert's brain is preventing the fluid from flowing correctly, is there an issue with the fluid not getting to these other areas? The simple answer may be that the fluid is created in multiple places and we are just draining it from the area that has the problem. Based on a quick google it sounds like this might be the case. I will ask Dr. George on Tuesday though.

Another train of thought on that question is that you could possibly target the areas that produce the CSF and try to lower the production. This would be similar to the surgery they did on my eye to lower the fluid production and help my glaucoma. I asked Dr. George about this, and he didn't think it was a good option for Robert. It sounded like it does not have very consistent results at this point. I think it may be that the brain is so complex it is hard to target the exact area and achieve the desired outcome.

On another note. We got some more great news when we got home yesterday. We had decided to bank Robert's cord blood before he was born. We had wanted to do this with Jack, but we just couldn't find the money and weren't entirely sure it was a good plan. I kind of kicked myself afterward, and told myself I would look at it more seriously the next time. When we had the opportunity during this pregnancy, we started asking a lot more questions and looked at all the options. We both decided we should really try to bank the cord blood this time. Our thought was if we ever needed it down the road to try to save one of our children, it would be worth any price. We might not ever need it, but you never know what the future holds. The other important thing we kept in mind was that cord blood treatments will grow exponentially in the coming years, and there will continue to be more and more options available. Since you only get one chance to do it, we went ahead and set everything up. The good news is that our collection made it to the storage facility and was successfully processed and stored for Robert! We also got a very good collection. The minimum number of cells they require for storage is 100 million. Our collection had 800 million cells! We owe Dr. Phillips (the Dr. who delivered Robert) a big thanks for doing a great job on the cord blood collection. We are just starting to do our research but we have found some information that talks about using cord blood to treat brain complications. Again, we don't know what the future holds, but we thank God that we have this option!