Pardon me. I've gotten some things out of order, I think. It's a consequence of doing this so long after the fact and not going over old notes beforehand. The opportunity to do these blogs comes quickly, and at night, so I have to knock it out as quickly as possible. I'll clean things up later.
Nadia had been moved to the pediatric intensive care unit (PICU) for her massive abdominal swelling. The doctors were seeking out possible causes when I eventually determined that Jessica needed to breathe something other than hospital air and think about something other than medical terms, because it was beginning to look like we could be in the hospital for a while. I know it's easier to avoid a miserable seclusion than it is to leave it. Jessica and I took short trips every three days or so to the store or something, in addition to my trips home to deal with the dogs in the afternoons.
I was starting to get the big picture. Days of blood draw after blood draw and doctors having suspicions without answers gave me the idea that Nadia was going to get worse before she got better. I fought to stay in the real world. I suggested that Jessica get some insurance / FMLA paperwork completed one day in the PICU family waiting room as a way of putting her focus elsewhere.
While in that waiting room, we had a short conversation with a woman who had a son in PICU. She started up some small talk, and even though I generally am annoyed by small talk, I obliged, because it's a children's hospital. Not really the place to be curt towards people who need to talk. The small talk ended up as anything but. The woman told Jessica and I that her son was in PICU because she had accidentally hit him with her car. He was in a coma, and nobody knew if he would ever come out of it. The woman hadn't said she had hit her son out loud until she did it with Jessica and I. The woman was about to break when someone came in and said that the doctors wanted to see her, so she left.
I covered my mouth because I thought I was going to vomit. I stared at Jessica, who stared back. Eventually I went over to Jessica, held her hand for a moment, then took a walk. It was comforting in the worst possible way to know that no matter what the end result with Nadia might be, it wasn't our fault. After calming down, the realization was helpful. A little bit of me stopped feeling awful for my family and started feeling thankful for knowing that it could always be worse.
Around the time Nadia's swelling seemed to plateau, Jessica and I spent much of a day out and about. After we got back to the hospital, we spent some time with Nadia, then retired to our sleep room.
We got a call from a nurse at three-thirty in the morning saying that Nadia had stopped breathing properly on her own, and that we should come to PICU just in case. We then had to wait outside of PICU for a doctor for about half an hour, because there were so many people in Nadia's room and so much going on.
By the time we were able to see Nadia, she barely looked like our baby anymore. Her swelling had gotten out of control quickly. Over just a few days, she had gone from just over four pounds to around ten pounds, and the gain was almost entirely from the fluids she had been on. All of the extra weight created a pressure against her diaphragm that had severely hurt her breathing.
I thought that things had become difficult for me when I tore the IV out of Nadia's head. Then I thought that I had reached a real level of understanding when doctors were stabbing her every eight hours or so for more blood than it seemed like an unhealthy baby should be losing. Then I thought my shame had bottomed out when a drainage tube had gone in through Nadia's mouth to pull fluid out of her stomach, and she alternated between writhing to get it out and thinking that it was food for her to nibble on. At the point that Nadia was ten pounds of fluid-filled newborn with hoses and tubes coming out of and going into everywhere, and she didn't really open her eyes for days, and couldn't breathe on her own, and instead of getting rid of liquid like a normal baby had a tube in her side pulling out fluid with gravity, any parent who had gone into the situation from a healthier place would have said, "this is it, one way or another." Unfortunately, I couldn't feel that, because I'd already felt it several times. All I could do was wonder how much more monstrous my baby would look. What would tomorrow be? Would she be a skeleton again? Would she inflate so much more that I wouldn't even be able to see that she had ever had eyes? Would her ears disappear under inflated skin, as it seemed they would?
Was this it? Would she be here the next day?
I am a Christian. I have beliefs about what would happen with Nadia were she to leave. It wasn't so much her that I was worried about. It was the rest of us. It was me. I knew that I had finally come to a place where I wanted her badly. I just wanted to hold her without fearing that she would break or pop. I wanted to lay with her without worrying about this hose or that. I longed for the chance to change her diaper without a monitor screaming in my ear that it was getting a proper reading because her foot was moving around so much. I was starting to believe that I had missed the chance, that I had wasted every non-hospital second I had been allowed with Nadia. My heart had frozen. I was just waiting for the hammer to drop and shatter it. I functioned, and I philosophized, and I was pragmatic in how I went about my day and my plans, and I explained to friends and family and teachers and classmates that I had to keep going because even if Nadia were to die, I still had two girls to work for. Secretly, I was just waiting for the numbness that I believed was coming, because I thought it might be better than the guilt I was feeling about not holding Nadia enough, not kissing her enough, not loving her enough.
Then, one day, after what seemed like a week of not opening her eyes, Nadia looked at us.
Then over several days, her swelling reduced.
Then she breathed on her own.
Then we left PICU and went to a regular floor.
Then she ate, peed and pooped like a regular baby.
Then we came home.
I won't lie to you. There are still moments when I hold her and think about other stuff that I need to do during the day. I don't believe, though, that I'm doing it more than any other parent of two with a lot of stuff to do. I love holding Nadia. I love it when she looks at me. I begged for more days out of a hospital with Nadia, and I got them. I don't intend to waste them. I'm thankful for them, but I still miss the days that I wasted.
It wasn't until we were home that I understood how awful I had been as a parent towards Nadia before and during much of the hospital stay. In the rare moments when I was able to hold and love Nadia without worrying about getting puked on or fending off a rambunctious Sofia, I asked myself why I hadn't had those moments before the hospital. The only thing that made sense was that I hadn't put myself in a position to have them.
When I asked myself why I hadn't been loving my baby properly, the only answer was that I hadn't been dealing with a baby at all. I had made her into a burden in my mind. Once it seemed like we might lose her, I knew that I had bastardized my own child in my heart. If she were a burden, I would be relieved to lose her. She is a baby.
And she eats like a horse now. And pees and poops a lot. And cries. And looks at us and recognizes us and loves her big sister and is growing, growing, growing, and she is surprising the hell out of the developmental doctors. She is stronger and more attentive than anyone expected that she could be. She has rolled over multiple times, which nobody believes until they see.
And she is loved properly. And she is not a burden. And she is not a problem. She is everything.
And, obviously, I am humbled.