Moreena wrote about finding that her daughter is not on the transplant recipient list, three months after she had thought she had been placed. Status: 7, meaning inactive.
This brought me back so clearly to an evening in middle to late September 1999. I was in the NICU, holding Aidan. He had finally reached the weight where he could be a possible candidate for transplant; the minimum was 5 kilos, or about 11 pounds. He was three months old. He had a pik line into his scalp (slightly more permanent version of an IV) , which was constantly oozing a bit of blood because of his coagulation dysfunction; he wore a bunch of monitor attachments; he had an oxygen cannula in his nose because his distended belly (from peritoneal fluid due to liver failure, sort of like the large bellies of famine victims) compressed his lungs too much for him to be able to take a deep breath. His hands and feet bore the stigmata of hundreds of little pricks from IVs and daily blood draws, many of them very bruised, again because of his prolonged coagulation times due to end-stage liver failure. Even today, many of his littler veins are stopped up or rerouted because of the scarring, so every blood draw is a bit of a reverse roulette. ... jab that needle and hope for the best, and sometimes repeat again and again.
AH -- I'll take a deep breath now. It's hard to bring myself back to those days, and there is a lot of medical terminology there. Basically, the kid was covered with tubes and wires, his little arms and legs were wrinkled and thin, and he was a deep, warm golden from the liver disease. Even his eyes -- golden and brown, looking up at me thoughtfully, with a hint of introspective melancholy. He was at risk for a major hemorrhage at any moment, and he could hardly breathe. He had to struggle through every day, and he had struggled through about 100 of them so far. Everyone knew he was getting to the end, if he didn't get that transplant.
His belly was like a big golden melon. You see a petite woman pregnant with twins and you get a very rough idea. A very deeply tanned pregnant woman, perhaps. It was hard to hold him so he would be comfortable. If I shifted him the wrong way he'd give a small groan and his oxygen SATS would drop. His heartrate would periodically go above 200 during these days. Then the monitor would ding. So it would be like this: me humming, rocking, looking into his deep soft eyes. Ding! a musical, soft note, like an airplane announcement. I hum some more, exchange a couple of words with a nurse. Dinnngg! Above 200 again. This was happening all day, because Aidan's liver failure was generalizing to his other organs, and he was in the beginning stages of heart failure. They couldn't do anything about it; the monitor was just there as a sort of herald, a reminder to keep a lookout. Sometimes if the dinging continued for too long, the nurse would push the mute button. Then I'd watch the screen, with fascination, until it dropped back down to the 170's or whatever was his norm back then.
My husband was to be the living donor. He had gotten all the tests and he had the same type blood and was in great health. The surgery would happen any day, now that Aidan was up to the magic 5 kg. We had a graph that we used to mark down his daily weight. Oh, we were involved parents. I spent several hours every day at the NICU unless I had a cold, and then Kevin would go instead. I was drinking up this time with my baby. Kevin (my husband) would keep an eye on our other five kids. It took the nurses about ten minutes to unhook him, swaddle him, put him in my lap, and rearrange all his tubes, so I made sure I got to the bathroom BEFORE because basically, that was it. If I was going to put him back down in his isolette, it was going to be a while before I could get him in my arms again, because that was a major undertaking for everyone.
And that was all I wanted; just to hold him. There were so many days in his short life when I hadn't even been able to do that. It was like all my mom instincts were focused into a pinhole -- just get my baby in my arms, wrapped in immaculately clean, warm- from- the- warming- oven hospital flannels. Stay with him all day. Just hold him. Forget going to the bathroom or getting a snack. Just hold him and hold him. Then go home (to our little temporary city apartment) and try to dredge up some mothering instincts for the rest of the kids.
This one will have to continue in another post. Anyway, here is Aidan during that time.