Becoming a Parent in the NICU

The first time I saw my daughter Mira was about 12 hours after she was born; it was the middle of the night, though I couldn't have told you what time it was. Someone wheeled me down a bright white hall, through the whoosh of automatic doors and into the NICU, and to a stop in front of the Giraffe incubator that held my 845-gram baby. Her wrinkled little face grimaced around an endotracheal tube; there was a catheter where her umbilical cord had been, her toe glowed pinkish red. She was surrounded by rows of other babies like her, all immobilized in plastic wizardry—the incubator seemed as complicated and as impenetrable as a sedan. I didn't know where I was, who I was. Our nurse, Geri, came close, helped me stand, and spoke blessedly matter-of-factly: She said congratulations and called me "mom," the first person to do so. Then she said: "You can touch her." I stared blankly. I could touch her? I didn't know where to start. How did I open this contraption? Where was it safe to touch her? What kind of mother was I? I knew nothing—don't mothers know how to take care of their children? How could I be this child's mother if I didn't even know how to touch her? With Geri's friendly prodding, I gingerly popped open the porthole and placed my pointer finger on the arch of one of Mira's tiny feet. I wanted her to know it was me, but of course there was no sign of recognition. I hadn't noticed that my hospital gown was hanging open in the back. Without missing a beat, Geri slipped behind me and tied me up, so my backside, in giant hospital underwear, wasn't hanging out. Then she busied herself, giving me time. Geri was a veteran. Just to look at her was to know her competence. When I think about that moment now, what stands out to me is that all of us were in different worlds, overlaid on each other. The NICU is not one place, it is many places: There is the world of the parents, who are having the most frightening days of their lives, dropped into a setting in which nothing makes sense. It felt to me like suddenly becoming illiterate, or being lost in a country where you don't speak the language. (And some parents don't, which makes the experience even harder.) And then there was the world of the nurses, for whom the day of my daughter's birth was a Sunday evening at work like every other Sunday evening at work. The nurses were in a world that they understood—the babies and their impossible bodies, the machinery, the numbers bleeping on the monitors above. In fact, the nurses were in their element, their expertise honed precisely to this space, to this technology, to these patients. It is very strange to feel so profoundly disoriented, and to look around and see this cadre of experts who are clearly keeping your baby alive. I had the distinct feeling of being stripped: Stripped of all my ways of knowing and my identity, both as the person I was and as the mother I hoped to be. I fell back on ways I had navigated health care settings before, so I took notes. I am a journalist, and taking notes is second nature, a way to understand. But a resident saw me writing furiously and laughed, as though it were cute: "Oh, Mommy's taking notes," he said. This, of course, was totally inappropriate, but at the time, I was just embarrassed. My ways of knowing were not applicable here. I felt superfluous, not useful, certainly not indispensable, like a mother should be for her baby. This feeling has been noted in the literature: "struggling to mother."1 The transition to motherhood, or parenthood, can be difficult under the best of circumstances. In the NICU, it is exponentially more so. Nurses can stand with parents in that rift, in the chasm between what we thought motherhood would be, and what it has turned out to be. Both research and common sense suggest that nurses have tremendous power to help parents feel competent and bonded as a family—which can positively affect outcomes for both the baby and family. Because, especially in the early days, to act like a mother is to feel like a mother. When you have a newborn, much of the parental relationship is predicated on acts: Making decisions for your baby (How will you feed them? Who will you invite to meet them?) and performing the care that they need: Feeding, holding, clothing, helping them sleep, changing their diaper. Even making eye contact. There is not a single item on that list that was in my control. It is nearly impossible to act like a mother-to feel like a parent-in the NICU without an open and reciprocal relationship with a nurse, who can share her or his ways of knowing, and make it clear that you are important in this strange new world, as a parent and as a human being. When nurses do this for families, it is powerful almost beyond words. It's the reason people write to me to tell me about a nurse who cared for their baby decades ago. Dr Monica McLemore has said2 that the real essence—the real magic—of nursing is not the complex skills that nurses perform. She posits instead that the essence of nursing is helping individuals, families and communities navigate and manage life transitions. The transition to parenthood is one of the most fundamental in human life. By helping with this transition, nurses not only treat the baby's physical body, but also help to heal—even help to create—the family itself. And so perhaps the most important expertise that neonatal nurses have is their way of knowing how to be in relationship with the whole family, all in the service of caring for the baby. Out of that relationship come understandings that are not only helpful for the parents but also for the nurses in providing care: This family likes to chat; this family prefers quiet; this family is having trouble affording parking; these parents had a previous premature baby who died; this father understands best if you draw a diagram; this mother does not want to breastfeed; this mother is absolutely determined to breastfeed; this mother is struggling with anxiety. This work is just as complex as any other aspect of NICU care, and none of it is separate from caring for the baby. Of course, neonatal nurses have highly specialized biomedical knowledge. This was immediately obvious to me when I saw how Mira's nurses cared for her, how they touched and tended to her, how they made decisions about what she needed that day, flagged concerns for other providers and generally seemed to keep her alive, minute by minute. This was awe-inspiring not in a greeting-card way, but in the way that it feels to watch experts in the most extreme environments-like watching a floating astronaut fix part of the space station. But what else did our nurses know? They knew that the next several months in intensive care would mean that we were in a relationship with each other: me, my husband Amol, my daughter Mira, and her nurses. We were all engaged in this care process together, though I didn't understand it that way at the time. In fact, if you had asked me what the NICU was about, I would have said technology, life support; I would not have said it was a place of relationship. I could not imagine how I could build a relationship with anyone—let alone my newborn daughter—in a place like this. Developmental psychologist Dr Heidelise Als, who pioneered the idea of developmental care, described this3 so aptly. "Intuitive parenting for the full-term baby is regulated by evolution," she explained. "There are exceptions but it works in the majority of cases. For preemies, we need to be more aware and attuned so that we understand the baby." In other words, premature babies are communicating, but not in the way that parents have evolved to expect. We need nurses and other neonatal providers to help us translate. As Als explained, and as I experienced, when parents don't know how to read their own baby's cues, they can feel incompetent, or even, on some level, betrayed, which can lead to guilt and shame. This is where that therapeutic relationship comes in: Nurses often know how to read premature babies, and they know how to communicate with the babies in turn. When nurses share this knowledge with families, it is a decoder ring that lets parents enter the world in which things can make sense. There is so much data that suggests that simple parental presence, parental feeding and kangaroo care, is instrumental in the healthy development of babies in the NICU. But many parents don't know that at first, and it can be near impossible to feel important in the NICU. It is even more difficult for parents from marginalized groups: Parents of color who face racism in and out of medical settings; LGBTQ families; families who don't speak English; families who can't afford to take leave. Nurses can be the ones who help us understand our own importance, to help us do what we can, and to understand our right to act as parents, even in intensive care. Our regular weekend nurse, Kavita, always started her assessments by just watching Mira; she would stand very still and examine her for many minutes at a time. By watching Kavita watch Mira, I came to understand that there really was a baby—my baby—underneath all the technology keeping her alive. And if Kavita, with all her knowledge, needed to observe Mira to understand her condition that day, I could do that too. Kavita chatted with me about Mira; she talked about my daughter as a person, with particular needs and characteristics and strengths. For me, Kavita's approach helped me see NICU care as deeply human, reliant on insight that came from close attention to other people. When nurses helped me understand how to take care of Mira, they were also helping me understand myself as her mother. When I held Mira against my bare chest in kangaroo care, I learned not to stroke, but to make my hands firm, still and containing, like the muscular walls of a uterus. She relaxed against me, and I felt she recognized me. I learned to keep my voice low. And I tried—never quite succeeding—to watch my baby, not the monitor, as all the nurses said. Once, Mira's blood oxygen percentage plummeted to 77, and the alarm sounded, increasingly shrill. I looked at the monitor (not at the baby!) and leapt up to find our nurse. I turned around to see her already there, her eyes on Mira's face, which was pinkish. The nurse was unconcerned: "If her saturations were really in the 70s, her skin wouldn't be pink." This nurse explained to me how to watch Mira's color, especially around her lips-Mira was more reliable than the monitor. The technology was prone to errors, and sometimes close attention to human details was the best way of knowing. I saw, when Mira had real apneas and bradycardias, how her skin went dusky, gray-blue. In later years, many times, I comforted myself with the distinct pinkness of her lower lip. Or, a few times, a dusky cast sent us straight to the hospital. I needed that knowledge to be Mira's mother. This is not to say that these relationships functioned perfectly: Afraid that something terrible could happen, I deferred to the nurses in Mira's care more often than was probably healthy. One morning about a week before Mira came home, when she had graduated to an open-topped bassinet and was on room air, I asked our nurse, whom I didn't know well, if I could do kangaroo care. She looked at me for a minute and said, "She's your baby! You don't have to ask for permission to pick her up." I was sincerely shocked: I really had thought I needed to ask for permission, and I had never picked her up on my own before. And again, this made me wonder: What kind of mother was I? I had never once cupped the back of my daughter's head and neck and lifted her to my body. I was afraid I would hurt her. So I asked for help—I was good at asking for help by then—and the nurse showed me how. No one wants to become a parent in the NICU. In retrospect, I learned some hard truths more quickly than I would have liked—but these truths reveal themselves to every parent eventually. I couldn't protect her from pain; I couldn't know her future. But also, and more importantly: I couldn't do it alone. The reality is that no one can do it alone, and no one should have to try. It is such a cliché to say that raising a child takes a village, but when you have a premature baby that reality is unmissable from the very beginning. Without our nurses, Mira and I and Amol would not be the family that we are now. The nurse–parent relationship can be a locus of power, knowledge and compassion for all parties, and to me, there's nothing more beautiful, more full of promise and potential, more worth protecting, in all of health care. –Sarah DiGregorio, MA Independent Journalist