An Intimate History of Premature Birth. Sarah DiGregorio
spreading infection, I imagined, and I’d fantasize about slowly strangling him or cocking a gun and firing. It was a ferocious, helpless, wounded-animal response—Stay away from my baby—one that made me unrecognizable to myself.
Infection, including a cold, was one of the things that could, in theory at least, kill Mira. It was the middle of flu season. When I got to the NICU in the morning, I put on surgical gloves and pulled out the super-extra-sanitizing wipes that kill HIV and hepatitis C. They said FOR STAFF ONLY, but I thought they probably wouldn’t kick me out for using the wrong wipes.
I claimed a chair and wiped it down. I wiped down my phone, my Kindle, my bag, especially the straps, and the surfaces around Mira’s incubator. If someone, anyone, touched any part of my chair during the day, I’d wipe the whole thing down again. Before I came close to the incubator, I washed my hands with scalding water and then rubbed them with foaming hand sanitizer. If my hands touched anything—my jeans, a magazine, my face—I would sanitize them again. Before kangaroo care, I would run to the bathroom—using paper towels to avoid touching the door handle, the sink, any surface—and wash my chest, arms, and hands. Then, back by her pod, I’d rub my entire chest down with the foaming sanitizer, then frantically fan myself dry. At one point, one of my favorite nurses looked me up and down as I gobbed hand sanitizer between my breasts and asked, “Has your chest been somewhere I should know about?”
Doorknobs began to terrify me. Stores were full of danger—other people, multiple surfaces touched by so many. I’d shoot dagger eyes at anyone who came within a foot of me at a bodega. If you sneezed in my general direction, I genuinely contemplated murder. I’d bring groceries home and scrub them with sanitizing wipes. Who knew how many people had touched that can of tomatoes? Amol caught a cold and I was afraid to touch him or go anywhere near him. He slept on the couch. I demanded that he wear a surgical mask and gloves around the house until he was better, and maybe a little longer than that. My hands cracked and bled from all the washing, and I was secretly glad. It seemed appropriate; it was the way I felt inside made visible.
It’s obvious to me now that I was experiencing postpartum anxiety or depression or both. But the situation seemed so extreme that it was hard to modulate my response. If a doctor tells me that, in theory, my baby could die of infection, is it reasonable to wash my hands twice? Ten times? Studies have shown that the parents of NICU babies are at risk for post-traumatic stress disorder (PTSD)—especially symptoms like fearful hyperarousal. One nurse I talked to said that she feels there should be a therapist for the parents on staff at every NICU. As it is, the nurses end up fulfilling that role as best they can.
Really, the nurses run the NICU. The physicians pop in and out, but it’s the nurses who notice when something is wrong, who know when to recommend a blood transfusion, who restart babies’ hearts dozens of times each day. For the smallest babies in our NICU, there was a ratio of two patients per nurse, so the relationship was intense. All day I watched the nurses. I eavesdropped on their conversations about where to get lunch; I imagined their lives. In a strange way I loved them, was obsessed with them. They were all women: fit, ponytailed, sneakered, and swift. They looked like Neutrogena commercials. They handled Mira and all her wires and probes with infinitely gentle skill, like someone wrapping the most fragile gift in the world or dismantling a bomb.
Every three hours our nurse would do Mira’s “care”: raise the lid on her incubator to change her diaper, take her temperature, check her skin for lesions, adjust her CPAP mask, and shift her position. They’d attach an empty syringe to the end of her feeding tube and draw up to check the contents of her stomach. If she’d successfully digested the last tiny dose of breast milk, another dose would be queued up to drip down into her over the course of the next several hours.
There was something about the open-ward setting, in which we were sitting inches from other parents and other babies, that paradoxically didn’t encourage intimacy. Maybe it’s that there was already too much of it. But there was one mom across from us whom I started chatting with in the early days. Her son was one of the only babies smaller than Mira in the NICU. She and I used to sit in companionable silence next to our babies, sometimes with our husbands, too, and then meet in the pumping room. We’d sit facing each other on the plastic chairs, boobs out, nipples suctioning in and out of the pump flanges, and make small talk: about her dog, our jobs, the logistics of taking maternity leave so early. How to get your milk to come in. (The NICU experience is not a recipe for successful lactation.) We’d ask about each other’s babies, how we chose their names, how they were doing. She always said her son was critical but stable, but it was clear that he was sicker than Mira, with multiple organs not working on their own. She still hadn’t been able to hold him. She never got more than a few drops of milk in those pumping sessions, but she always painstakingly saved them, and never stopped trying.
A couple of days before Christmas, I caught a cold. It meant I couldn’t go see Mira, who was nearing one month old. I stayed home. I pumped. On Christmas Eve, Amol came home from the NICU looking gray. The baby boy next to Mira had died.
I never saw that woman again, but I think about her every day. I picture her in the pumping room, never giving up, saving the drops. I say her son’s name to myself. I try to remember him well, his tiny form behind clear plastic, his parents sitting next to him.
The doctors never said Mira would be okay; they simply told us the news of the day, which, because we were lucky, was almost always cautiously optimistic: She was stable; she was growing. This narrowness of information was by design. Our favorite nurse told me later that the staff are careful never to say a baby is out of the woods until they are being carried out the door because babies have passed away days before discharge, struck by aliments like RSV, a common respiratory virus. So I hadn’t even allowed myself to think of the possibility that Mira could ever come home when I got to the NICU one morning and found a flyer taped to her pod, instructing me that Amol and I would both need to take an infant CPR class before discharge. There we learned how to do chest compressions on little rubber dolls and all about SIDS (sudden infant death syndrome), which premature babies suffer from more than term babies. (Which seems like insult upon injury.)
The hurdles to cross before she could come home were routine for a baby her size, and yet seemed insurmountable. She needed to be at least four pounds, more than double her birth weight. She needed to be able to maintain her own body temperature and eat on her own. She needed to be able to breathe by herself without desaturating or pausing in an apnea. And her heart needed to keep beating on its own, without help.
These episodes, called bradys for short, still plagued her several times a day. Amol and I would call the NICU right before bed and first thing in the morning to find out if she had gained any weight and if she had had any bradys. The episodes could be triggered by stress or exertion. If she had a lot of episodes in a day, there was worry that it presaged something more serious—an infection, say, which thankfully never happened, or a need for a blood transfusion, since her bone marrow wasn’t producing enough red blood cells, which did happen (another totally normal development). They could even be triggered by getting too comfortable, as when she was snuggled against my chest during kangaroo care.
One afternoon when Mira was about a month and a half old, we had a young nurse named Sarah. I liked her but—in my hyper-judgmental state—I thought she seemed more like a twenty-something you’d see at an annoying midtown bar than someone you’d want holding your baby’s life in her hands. It was an unfair thought, but that’s where I was. That day I was holding Mira when her heart rate started to plummet and the alarm pinged, first softly then more insistently. Sarah came over, observed the customary pause to see if Mira could figure this out on her own, and then started rubbing her back. Usually a rub, a pat, did the trick. This time her heart rate continued to fall. Sarah picked up Mira, who was totally limp, not breathing, and placed her on her back in the open incubator. She rubbed her chest more vigorously. Nothing. All the numbers on the monitor were falling, blinking, beeping. Mira’s skin had turned gray, a color I have seen only once before, when my mother died. With one hand Sarah grabbed a nasal aspirator bulb and, with the other, reached for the ventilator bag that hung by every bedside, in case of an emergency need to breathe for the infant, or “bag” them. But first she stuck the nasal bulb up one tiny nostril and used it to suck out some snot. And just like that,