Amy
APRIL 1986
Monday, March 31, 1986
I’m in the neonatal ICU at Jonas Bronck now. Most of my patients shouldn’t even be alive. They’re so small and sick, I can’t understand how any of these things are going to grow up to be anything like a normal child. Most of them don’t even seem human. It’s such a contrast for me. I spend the days running around doing all this worthless work on these premature babies and then I go home and see Sarah. Sarah’s a real person now, she’s walking around and talking. It’s great to watch her and to be part of the process, but then I go back to work the next morning and I realize that no matter what we do or how hard we work, it’ll never be possible for most of my patients to do any of the things my baby can do. I feel very sorry for them but I also feel sorry for myself, because I’m being forced to take care of them and I don’t want to have to take care of them. I stand back sometimes and realize that we’re not really doing anybody any good. But that’s not for me to say. I’m supposed to do what the attending tells me.
And things are even worse this month because I’m feeling so bad. I’m nauseous all the time now and I’m always completely exhausted. I get to a point around three o’clock every afternoon where I have to lie down for a few minutes. Trying to get a half hour or so off in the middle of the afternoon in the NICU is not the easiest thing to do when all your patients are in critical condition and dying and there’s still a ton of scut that has to get done. So far this pregnancy is a lot worse than my pregnancy with Sarah. I’m feeling a lot sicker. It’s probably because I started out this one so chronically exhausted.
I still haven’t told anyone in the program except Bob Marion that I’m pregnant, so I have to cover up how I’m feeling and make excuses about why I need to go off and be by myself for a while. I don’t think anyone’s caught on yet, but I’m sure it’s only a matter of time.
I’ve got a total of eight patients. Four of them started out weighing less than eight hundred grams [one pound, twelve ounces]. Two of these are relatively new preemies and are extremely sick. Both are on ventilators; one has NEC [necrotizing enterocolitis, a serious infection of the intestine] and sepsis and all sorts of other problems. I spend most of my time trying to keep these two from dying. My other two preemies have been around longer; one’s about a month and a half old and the other’s nearly four months old. I remember the four-month-old from the last time I worked in the unit; he was very sick back then. Now he and my one-and-a-half-month-old are stable but they’re both really damaged. They both have grade IV IVH [intraventricular hemorrhage, a hemorrhage into the ventrical of the brain; IVH is graded from I to IV, with IV being the most severe], and one has bad hydrocephalus. The four-month-old has been abandoned by his mother. The mother hasn’t been around in over a month. I don’t know if I can say I blame her. I’m not really sure what I would do if I were in a situation like that. God forbid! But the nurses are really attached to this kid. That seems to be something that happens a lot when babies spend so many months in the unit.
I’ve got another patient, a six-month-old, who was born with congenital hydrocephalus. He’s been in the nursery his whole life! His head is enormous; it looks like a basketball. He’s had five shunts placed, but none of them seems to have done any good. All he can do is suck, breathe, and keep his heart beating, so he won’t die for a long time, but he also isn’t going to be leaving this unit. It’s really sad. His mother visits him every day. She’s kind of a pain; she always asks about his head circumference and tries to find out what his last CT scan showed. I feel sorry for her. She’s really devoted to him. I don’t think she has much of a life outside of here.
Then I’ve got this whole assortment of crack babies who live in the ICU. We had some in the well-baby nursery when I was working out there but they were mostly just social problems. These babies in the unit are all very sick. They all started out addicted and SGA [small for gestational age]; a couple of them have had convulsions. And all of them have either been abandoned or have been taken away from their mothers by the BCW. They’re all very pathetic. They start out sick, and even when they get well, they have no place to go.
So that’s my service so far. I don’t understand how I’m going to have enough motivation to get up every morning and go to work. I’d rather just stay home and lie in bed all day than go to that horrible ICU.
Saturday, April 5, 1986
One of my patients died last night. Dying was definitely the best thing that could have happened to this baby; he had almost no chance of survival. But dealing with the mother was very hard.