I've been trying to write the post for a long time. I couldn't tell you how many drafts have been tossed into the recycle bin. There have been many incarnations--the scientific explanation, the heart-wrenching Lifetime Channel version, the "just so you know" post. None of them feel right, so nothing gets posted.
This time, it's all or nothing.
|Max, 3 months. March 4, 2011, in the morning.|
WARNING!! This next picture is a little difficult to look at.
|Max, 3 months. March 4, 2011, in the afternoon.|
Max didn't stay in ICU for very long--a day or so. And it didn't take long for him to come back to us after the pain killers wore off.
His entire hospital stay lasted only eight days. He was discharged on the very day he turned four months old.
|Max, 4 months. March 11, 2011.|
Near the base of that long scar, but not visible here, is a large nodule. It's on the breast bone. As I understand it, it's kind of like a scar on the bone in the spot where the breast bone was held open with the spreader tool. It'll never go away. I think it will become less noticeable as he gets bigger.
The night before the surgery was strange and challenging. Sean and I dealt with it separately, in our own ways. He stayed at the hotel bar with is brother and mother. I stayed with Max by myself in the room and took a series of sad photos of him lying on the bed. I can't explain what it feels like the night before you might lose your child. Hollow and painful. No one could comfort me.
After letting the nurses take him from us the next morning Sean returned to the room to nap. He wanted me to join him and pressured me quite a bit. I didn't want to and finally snapped at him. I wanted to be as close to Max as they would let me get which was a whole waiting wing where dozens of people awaited news of their little ones. There was a strange sort of camaraderie among the waiters, all joined for a moment by something unthinkable and miraculous at the same time.
Max's defect is called a complete atrioventricular canal (AV canal). Basically, the wall that runs down the center of his heart had a large whole in it. As a result, his heart had only one valve, not the required two valves, allowing oxygenated and deoxygenated blood to mingle. Not a good thing. He would not have lived for a very long time.
Partway through the morning a nurse came to tell us that the initial incision had been made. No one returned with any news until the surgery was over. It was still some time before they let us see him.
We are blessed to live in this age. In 1985 people with Down syndrome had a life expectancy of 25 years. Now, hospitals eagerly repair heart defects that otherwise would have meant death. We are even more blessed to live where we do, only miles from the greatest pediatric cardiac hospital in the world: Boston Children's Hospital. The doctors and nurses there saved my boy's life. They saved mine.
All I can say is, thank you.