Answers

The last week has been one of answers and even more questions. I have been waiting to write this post until Christmas was over and I know it's kept some of you waiting as well. This post is very hard for me to write and share. I am angry. I am sad. My son is going to die.

Last Tuesday night, Colton went for a repeat MRI on his brain to see if there was any progression of the HIE. Well, what they found was very different. Colton has been diagnosed with Lissencephaly. (Lissencephaly) Lissencephaly means "smooth brain." When we are formed in the womb, lots of things have to happen. Part of that is forming your brain. When it is formed, you end up with something called gyri. These are the folds of your brain that contain the neurons that allow you to learn and do everything that you do in daily life. Colton does not have enough gyri. This is what makes his brain smooth. Children with Lissencephaly have seizures, intellectual difficulties, feeding difficulties, growth retardation, hypotonia, difficulty swallowing and most children die by the age of 2. There are some genetic causes of Lissencephaly as well as possibly a virus or blood flow issue in the first trimester.

Also on the MRI, they found that Colton has some subdural hematomas. (Subdural Hematoma)These were not there on the first MRI. They happened in the two weeks between MRIs. The current thought is that these have happened because Colton's head is bigger than his brain. When this happens, the blood vessels can break and cause clots of blood between the skull and the brain. They are not currently bleeding and seem to be an incidental finding at this point.

With the last post, we thought that we would try Colton off the ventilator again. We did that on Wednesday (Christmas Eve). He failed. This time he only lasted 4 hours. He was quickly reintubated and he remains on the vent now. Colton can not tolerate not having extra support. When he doesn't have the breathing tube he has to focus solely on breathing and can't keep up with other things that he needs to do. He can not keep his temperature up and gets really, really cold. He can't digest his food and tends to throw it up. When the breathing tube gets put back in, these things get better.

Colton is tolerating his feedings very well. He is up to 60ml every 3 hours as of today. He still has his central line, although the TPN was stopped today. We stopped giving him suppositories to make him stool earlier this past week to see if he would go on his own. He is :). They have started giving him formula to supplement his feedings, as I am only getting about 1/2 of what he needs per feed of breast milk.

Friday, Nick and I made some very tough decisions. We decided that in order to get Colton home he would need to have a tracheostomy and a feeding tube placed. Since he is not tolerating being off the ventilator, he needs to have a more permanent airway placed so that he can be on it at home. Since he will need a tracheostomy for breathing, he is is also going to need a more permanent feeding tube placed. This will be placed into his stomach. He does not have enough strength to be able to breast feed or take bottles. These two things will hopefully be done this week. When these are done we should be able to take him home faster. Another decision that we made was to make Colton a DNR or Do Not Resuscitate. This means that if something were to happen to Colton and he would need help to survive we don't want that. He will not receive chest compressions or any medications to restart his heart. We do not want Colton to suffer needlessly.

I am angry. After everything that we have been through to try to have a baby, we got lucky and were able to conceive on our own. Now my miracle baby is going to be taken away from me. I want to know why this has happened. I want to know why he is being put through this. He is an innocent baby that never should have had to go through this. I want my son to be ok, to grow up and smile and walk and talk. He is so loved and was loved even before he was conceived. I leave you with a few pictures of my precious boy. The one is the first time he's had both of his eyes open at the same time.