I tell myself, he is okay...

Monkey sees the cardiologist tomorrow. I know it is just a check. The tests were all normal and should reassure me that all is fine. I still have this feeling eating at my insides. I have that nervous feeling that makes you sick to your stomach. I hate that feeling.

To top that off, he decided to have what we thought was an asthma attach at daycare today. He started coughing and was struggling to catch his breath. I took him to the doctor and they don't think it is asthma. He instead has an ear infection/sinus infection. Again? Really? Monkey has been sick every three weeks since the spring. Actually since I put him daycare and went back to work. So another antibiotic...oh well, it freaks me out less when he touches the shopping carts at the store this way! It should kill those germs too! I know it is not funny, but it is so predictable.

I also found out today that we were approved for Synagis this year. Monkey hates it so much. We have to go to the hospital once a month to get it. It takes forever and he is now big enough that he gets two shots. He is on the bubble for getting it. Usually, babies only get it the first year. This will be our third RSV season with it. Our pediatrician thinks we should do it since our insurance company will pay. The shots are expensive. That is actually an understatement. They are $6,000 a shot. That is $6,000 x 6 months. You do the math. That is one crazy expensive cold preventative. We have good insurance. It will cost us $0. Monkey will be hysterical every time we go. He cries once we get to the parking garage at the hospital. He will sob all the way up the elevator and scream bloody murder when he sees the nurses. Is it worth the trauma to him? My luck if I don't take him, he will get RSV and I will feel like an ass.

I filled out his medical history forms for the doctor tomorrow and was stuck at how much they leave off. Isn't being a twin important? How about being the survivor? How about his little brother having such a rare, unknown diagnosis (or lack there of)? Doesn't that deserve a line in his medical file? I have a hard time untangling their histories. I do think it is relevant to Monkey. Maybe I think if I always mention it, one of these specialist will have some insight for me? Is that wrong?

I sat last night and read over Noah's medical records from the night he died. I also read the autopsy report for the 100th time. The discharge time is the time he died. "No heroic efforts. They understood and the baby was then taken into the mother's arms. We stopped bagging." It is all so clinical. The baby is Noah. He has a name. I am his mother. He was in my arms and all I wanted was heroic efforts. I did not understand. I was given no real option. I read it and wonder in this day and age, how there wasn't more we could do. How we never even got a real diagnosis. When asked what he died of, I don't know what to say. He died of pneumonia, but if not for his unknown disorder, he would still be here. So he died of polymicrogyria, seizures, hypotonia, an enlarged heart, and the list goes on and on. I read the list and realize how lucky I am to have had him for 90 days. That is amazing.

I watched an Oprah episode I DVR'd that week. It could be Noah. I wish I had known ahead of time. I could have prepared myself (I know you are never prepared). I could have thought out what I wanted to show him. I wasn't expecting him to die so soon. I thought I had time. It was cut short and I have so many regrets. This family is so positive. I wish I had their faith.

I hate doctors. I hate hospitals. I hate them, but I feel most comfortable with them. The hospital feels familiar. The nurses say his name. They don't tilt their heads and stand in uncomfortable silence. They knew him. They loved him too. I am ok while I am there. I am not a leper amongst them. I am not so alone.

Wish us luck tomorrow. I pray that I can keep one boy safe and healthy. I am going to try to have some faith. We will see how it goes...