I got to hold Hana for a long time today – over an hour. It was so wonderful. I closed my eyes and just felt her in my arms and tried to burn it into my memory forever. I think Hana liked it too – she almost fell asleep, but she successfully fought it off. Her eyes kept rolling into the back of her head and she seemed like she really wanted to nurse. She eventually got agitated. Hana was agitated most of the day. Maybe it was more teething, but maybe not. She’s almost back to the way she was before this whole thing started a week and a half ago, but even then something wasn’t quite right, so still, something is not quite right. She kicked on her activity mat (we put it on the bed!). She refused to nap. I saw her heart rate rise and my own heart rate started to rise. I felt more like a “normal” mom, doing normal mom things for her baby. I loved it.
I went for a short jog again today. It struck me that I was doing something not related to our hospital stay. For thirty minutes, I got to be something other than the mother of a hospitalized baby. I also got to leave the hospital for the first time in about 24 hours. Paul and I also went to dinner. We need to. More than ever before. We need to make time once a week to regroup and just be with each other, to check in and make sure we are on the same page. We have to be a team, a good team.
I am trying to prepare myself mentally for the day when I have to sleep in a different building than my baby. The very idea tears me apart. You are definitely not allowed to fall asleep in the ICU rooms here. You are not allowed to sleep in the lobby or waiting area either. So you either have a Sleep Room, like we have, or you have to stay awake all night (they will kick you out if you fall asleep). We won’t have the sleep room forever, well, if things progress, we won’t have it forever. It is just not sustainable to stay up all night either. This is not a sprint, it is a marathon.
They started her on a new drug this evening. It’s supposed to eventually replace the Milrinone, but I don’t remember the name of it. One effect of this drug is it lowers the blood pressure. Hana’s blood pressure was going too low, just after she fell asleep. She looks so peaceful and comfortable, but I want to stay in her room, just in case. But I know that they are on top of it and watching it carefully. I know this. I know that I need to try to get more sleep, more rest. I think I am slowly catching up but it is still hard to get through the day without a lot of coffee. I need rest so I can stay in this marathon.
Today is the first day I did not cry. Sometimes, the enormity of it all would catch me and swell up in me and I could cry, really let out a sob, but I am too tired to go there. I am just too exhausted.