Austin is gone and I am having trouble falling asleep. I had a really bad dream last night and I was trying to have peaceful thoughts when I laid down tonight to help me not have bad dreams again. I immediately thought of a moment the day after Drew was born. I slept in a chair in Andrew's NICU room the night after he was born. I didn't sleep much that night and I remember waking several times and always looking at his monitor to make sure his numbers were good. I could see his little knees and his sweet little head in his cool cap. Thank you to whoever put a fold-out chair in the NICU. I wish I had spent more nights in the room with him.
Taking a trip down memory lane...
*We had a meeting with all of the doctors at LeBonheur on Wednesday December 16th. I remember meeting Dr. Cunningham first. She was the Palliative Care doctor (sorta like baby hospice). I had on my Cape Cod shirt from Old Navy and she wondered if I had been to Cape Cod since she was from Massachusetts. Austin and I both felt more overwhelmed than we had ever felt in our lives. There was so much brain power in that room and they all had the same thing to tell us...our son wasn't going to get better. In fact, it was going to get much worse. Dr. Shah, the sweet soft-spoken neurologist, told us about Andrew's seizures. They were called myoclonus and looked like little tiny jerks...kinda like how your hand might jerk suddenly when you are falling asleep. Dr. Krishnan, the neonatologist, told us that his brain function looked severely suppressed. Dr. Cunningham told us that they would make sure he was comfortable. In those thirty minutes, Austin and I faced the unthinkable...our son wasn't going to make it. It was now time for us to be his advocates. We issued the DNR order and left the room.
*That same night, we went to eat at Huey's. I was so angry that the world was going on normally. I wanted to scream at everyone in the room, "how can you sit there and eat? How can you have mindless conversation when my baby is in the hospital dying?" I have never wanted to jump out of my own skin so badly.
I wish I could go back and live the whole thing over again. I would only do a few things differently. Mostly small things like staying with him longer, washing his hair, holding him more. Those thirteen days were exhausting and so terribly sad, but oh, how I wish I could relive those days over and over again.