Gavin's Life! Part 2. His first week.

Gavin was born at 2 lbs 8 oz, 16 inches long on March 26th, 2012. A few days earlier I had received two doses of betamethasone to mature his lungs, so when he was born he was able to breathe on his own but was working kind of hard at it so he got an ET tube placed to support his breathing. He had a hard time regulating his blood pressure, so he was on a dopamine drip and also insulin to control his blood sugar. Nate was able to be with him right away, but I had to wait until the next morning when I could get out of my hospital bed. I finally got there, and he was soooo teeny, but so perfect.
For the first 4 days of Gavin's life, it was a mix of medications and tests to figure out how to stabilize him better. He had lots of visitors and got to meet a lot of family! He liked to stretch out and show off his enormous feet and hands for everybody, and he definitely stole their hearts along with ours. On Day 4, they were going to do an MRI on Gavin, because we knew he had some fluid on his brain, and Dr. A told me they had done an ultrasound of his head and were a little concerned because his brain looked a little smooth. I of course went home and consulted Dr. Google. What I found was definitely not good. That was the point I began to get very worried, but I also knew that any time you look for a diagnosis on the internet you either come up with cancer or death, so I tried to move that to the back of my mind. I got a phone call that night that the neurology team wanted to meet with us on Saturday (Day 6).

Day 5. I arrived at the hospital and checked up on Gavin, I believe he was off of most of his medications at that point but was getting a blood transfusion for something. He looked good and wiggly and got really mad when I touched him with my chilly hands. I noticed at that moment that his sleeping position looked seriously uncomfortable, but after staring at him for awhile I realized that he was sleeping in the exact position that I do. On his side with his head cranked back, arms up and leg stuck out. And he was perfectly content. I held his hand and just smiled. After a few minutes, Dr. A came in and told me things were going well and he was pretty stable, and he wanted to tell me how the MRI went. He said we could wait to discuss it until the next day when Nate was coming for our meeting, but I have no patience and told him to get on with it. He proceeded to tell me that our Gavin would not live. He had lissencephaly, he said, and it wasn't my fault. I nodded my head and stared at my tiny and helpless son, numb. I had waited so long for him, and I wasn't going to be able to keep him. I started sobbing, and Dr. A kept apologizing. Gavin woke up from his comfortable sleep and started kicking and squirming and he did not calm down until I stopped crying. I made a decision at that moment, that my baby would not feel my pain. I didn't know how long we had with him, and he was going to feel nothing but love and our happiness that he had made us parents. I told Dr. A I would come back when I could compose myself better. If my son's life was going to be short, I was not going to let him feel one ounce of our sadness, because we were so incredibly happy to have him, no matter how the tides had turned.
Dr. A called me later that evening and said Gavin's genetics testing had come back, and he had Miller-Dieker syndrome, the same thing I had found on the internet the night before and was hoping so much that my Gavin did not have it. The life expectancy was extremely short, and the quality of life was not good. It was a life expectancy of pain and suffering, and I was horrified. I help people for a living, and in this instance there was absolutely nothing I could do to help my son. Helpless. Useless. I decided to stick with the only plan of action I could come up with, just love him hard for as long as he would let me. He would not see sad tears, he did not get to feel my pain.
We did meet with the neurology team the next morning. They repeated everything Dr. A had already filled me in on. They showed us the MRI of Gavin's brain, and used a lot of different ways to explain the progression of his syndrome. Among other things, there would be seizures... profound mental retardation... loss of muscle tone... breathing difficulty... feeding difficulty... and ultimately, death. I sobbed, again.
I don't know why, but I feel the need to clarify something. Throughout our prenatal testing, we found out about certain issues the baby had. We knew that he more than likely wouldn't be the definition of "normal". We knew he would have some sort of delays, and we did.not.care. That little boy could not have been more perfect in our eyes, and always was and would have been. My little Gavin, he was made for me.