Tyler looks great. He is over 6 pounds now and loves to be out of the hospital. He has been having a blast at the beach being held by parents, Grandparents, Great-Grandma, and Great Aunt and cousins. He has decided that sleeping in his bed is not nearly good enough now. He is up a lot at night. I think it's from the lack of noise and he loves to be held. He is eating much better this week and now looks like a newborn baby instead of a preemie. The butt cheeks have finally arrived.
Going to the beach with everyone also has helped Rachel adjust to Tyler and Mom and Dad not solely focusing on her anymore. There has been enough going on here to allow Rachel to come to Tyler on her terms. Everyday she has shown more and more interest in him. Now she will go up to him and pat his head or rub his tummy. And of course, she is having a blast running around after her cousins and playing in the sand.
We had a marathon trip at Dartmouth today. He saw the eye doctor for his second to last torture session. His eyes are developing normally and the in two weeks he will have his final check since he will finally be full term in age. Tyler and Ben had a great ride in the MRI machine today. While up at the ICN, he would be placed into the blue burrito to keep him still. For some reason the MRI office doesn't have that. Ben was asked to wear scrubs again and lay down on his stomach with his arms stretched out to hold Tyler's head. Good thing it was a quick scan because a baby can move his head despite a firm grip. From there we met with one of the Neonatal Dr's and the neurosurgeon. Everyone was very pleased that Tyler doing so well.
With that said, we are waiting to hear from neurosurgery about appointments to get a full MRI and then to OR. Yes, this is the 4th threat of brain surgery. It seems that we have cleared the blood clot problem and moved onto the cyst problem. The cyst close to the brain stem has gotten bigger and is blocking the pathway to allow the fluid in his ventricles drain naturally. (Haven't we been here before?) This weekend Ben and I noticed the fontinell filling up again. So we expected that something was happening in his head. The MRI will get a very detailed picture of his head including the exact locations of blood vessels and where they can get to this cyst the easiest. Depending on the easiest path to the cyst will determined what type of operation he will have. If there is a small window, they will put a shunt into the cyst. This is different than before, where the shunt was going into the ventricles. Again this is permanent and is prone to clogging and having multiple operations. If the cyst is easy to access they will punch whole all over it and allow it to drain without adding plumbing. In the long run this is a better option. He isn't showing any clinical signs of the pressure affecting in neurologically which is good. Ben and I are glued to our phones to figure out the scheduling. My bet is this time next week he will be recovering probably back at ICN.
One the positive side, Ben and I can allow the expensive babysitter work while we get a couple of nights sleep again.
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