An Intimate History of Premature Birth. Sarah DiGregorio

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the viability zone, the doctors made it clear that they could not predict what costs Mira would bear.

      There was nothing wrong with me, so I was discharged. I knew it was coming, but when I got in the elevator to go home, leaving her in the hospital, I lost my breath and bent double. My days crystallized into a strange routine. I pumped every three hours around the clock and froze most of what I pumped, since only the tiniest amount of milk was going down Mira’s tube. I got up in the morning, pumped, and then drove from our apartment in Brooklyn to the NICU in Manhattan. Amol took two weeks off and then had to go back to work: Our medical insurance depended on it. I sat by Mira’s pod. I watched the monitor that showed her pulse oxygenation, respiratory rate, and heart rate. I read The Martian by Andy Weir, which seemed appropriate, since I also felt stranded on another planet. Mira’s lips were chapped from the oxygen mask over her nose and mouth. She often batted at it with her little red hands. The only time her wrinkled face relaxed was when a nurse removed the mask for a few seconds a couple times a day to make sure her skin was holding up, that she wasn’t developing lesions. I’d take the opportunity to dip a piece of gauze in sterile water and rub it across her lips to moisten them and rub away the dead skin, and her whole body would go limp in what looked like relief.

      Several times a day Mira’s heart rate would suddenly plummet toward zero, setting off a round of increasingly shrill beeping from her monitor. A nurse would hustle over; pause a moment to see if Mira could handle the bradycardia, or low heart rate, episode on her own, and, if not, tap her back or chest to get her heart going again while I sat frozen, watching the number, willing it to climb. There was nothing wrong with her heart. The same thing would happen to the baby in the incubator across from ours, and it would be my turn to watch the back of the mother sitting there stiffen as she stared up at the number on her baby’s monitor. Sometimes very premature babies forget to breathe. Their hearts neglect to beat. That is the kind of thing that is completely routine in the NICU.

      I was allowed to do kangaroo care once a day, for up to three hours. Those were the only times I could hold her. I was not to cuddle or stroke or speak too loudly, which would overwhelm her delicate brain and could cause a bradycardia episode or lead to sensory problems when she was older. I cupped her tiny head and her tiny bottom against me and reclined, entirely still. I looked forward to those hours so much that it felt like a bad case of nerves before a date. And I started to lose my mind.

      Maybe we were all a little unhinged, those of us keeping vigil by an incubator day after day. I remember one mother in the breast-milk pumping room who obsessed over her own bowel movements, plagued by the feeling that something unnameable and terrible was wrong with her. My thwarted mind started to behave strangely, unreliably, spitefully. A five-pound baby would come into the NICU and I’d think, Jesus, what is that giant baby doing here? Or someone’s husband would cough a few times, 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

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