Uncertainty, Meaning, and Adventure as a NICU Dad

Shomir Wilson
21 min readJan 28, 2024

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My hand holding my son’s hand.

(NICU) neonatal intensive care unit: a specialized center in a hospital where intensive care is provided for newborn infants who are premature or have health problems.
Dictionary.com

The day after my son’s birth I surveyed the contents of our master bedroom closet, deciding how many changes of clothes to pack. My son had a life-threatening condition and shortly after his birth he rode a helicopter to a NICU at a larger hospital in Danville, 80 miles away. Previously I had packed a suitcase for three nights in my son’s birth hospital. I hadn’t used any of those, because shortly after my son’s birth and NICU transfer, my wife and I agreed I should return home for better sleep. She would need to remain in the hospital at least another day — it would turn out to be two — but I should go to be with our son. There hadn’t been room on the helicopter for me, and instead I would have to drive.

I decided I should pack additional clothes. I wondered how long babies typically stay in the NICU, but also whether an answer to that question would be useful. How long would my son stay there? I added two more sets of clothes, thinking five must be enough.

Soon afterward I left my house not knowing when I would return. I drove to Danville in the bleached light of an overcast Pennsylvania winter day. My son’s car seat was installed in my car, empty and waiting. Up until his birth — one day after his due date — I had no particular reason to be concerned about his health, but tragic outcomes had become eminently possible. I didn’t want to drive back home with an empty car seat, and I wondered whether I could donate it to the hospital in the scenario that I must return alone. Benefitting an anonymous new family seemed like it would be redemptive if the worst happened to us.

Still, there was familiarity and even comfort in the situation. Frequent travel had prepared me to pack on short notice for a trip with enormous uncertainty, including how long I would be gone and where I would stay, and to live out of a suitcase for long periods of time. I was called upon to fill a role that no one else was available for (at least until my wife was fit to travel), in a place where I knew no one — except my newborn son. I had navigated constraints similar to those in my career and had sometimes turned them into strengths. The medical staff I had spoken with at my son’s birth hospital and over the phone at his NICU hospital were calm and congenial, and I saw an analogue to my work as a professor. If they could carry on with their roles for my son, then I could carry on with mine, too.

I was a “NICU parent”, a term that I wouldn’t realize until someone applied it to me. (“Are you a NICU parent?”, someone asked me a few days later. I said yes, mentally registering the phrase.) I hadn’t thought much about what happens in and around a NICU, but it came to define many of my initial experiences as a parent. I shared some observations with friends, who were often surprised and interested in how this world-within-a-world presents itself. Those observations led to this article, which I’ve written for non-parents and parents alike, having recently crossed from one group to the other. I mostly avoided writing about my son’s condition, partly for his privacy and partly to keep the focus on my experience. I also avoided trying to comprehensively describe what happened, and instead I’ve written about things that I found especially interesting or remarkable.

I write with some privileges. In particular, my son was discharged from the NICU after 28 days, while some babies stay much longer. Medical staff followed a well-studied protocol to treat his condition, and because he responded well to treatment I had no difficult decisions to make. I have good health insurance, and my employer granted me paid parental leave. Absent any of those factors, my experience would have been very different.

My son, as prepared for helicopter transport shortly after birth.

As soon as I arrived at the NICU a nurse mentioned my son’s name and asked if I was his father. She directed me to his bed, one among a half-dozen in an alley-like area that fit into a larger medical suite. I would get to know some of the other rooms in the coming weeks. There were no chairs at his bed, but the nurse found one for me; a general lack of seating in the NICU would become a recurring theme. I sat down, not knowing what to do or how long I would stay. The environment didn’t invite lingering, as there was little privacy and little room. The chair was spartan, softened only by my winter jacket, which I soon took off because the room was uncomfortably warm. My son’s medical equipment prevented me from picking him up, though I could hold his hand.

The nurse alerted other medical staff and they soon visited to speak with me. They told me more about my son’s condition, information that I wrote down and texted to my wife. In what would become another recurring theme, I was surprised by the willingness of the medical staff to talk with me on my schedule rather than theirs. During the first two weeks, if I visited my son’s bed during business hours, more often than not someone would come to speak with me about an aspect of his care.

When I had finished talking with staff and texting my wife, the questions returned: what should I do, and how long should I stay?

I had packed a children’s book in my messenger bag, Ben Berry’s “Where Do I Come From, And Where Do I Go?” One of Ben’s siblings, a friend of mine from college, had given the book to my wife and me as a baby shower gift. It was a story about the origin of an individual turtle’s life, the origin of life on Earth, and the origin of the universe. It seemed poignantly appropriate for the moment. As I read, I thought about how much reading to him would benefit him and how much it would benefit me. I didn’t like the idea that it was solely for me, thinking that if it was, I would rather do something for him. The value was uncertain, but with the encouragement of nurses I would later read to him more books.

The need to find a place to spend the night got me moving again. I stopped by the nurses’ station, a kind of command center for the NICU, and a nurse there asked me the question first: did I know where I was staying? They recommended the Ronald McDonald House. I asked about eligibility requirements, wondering if it was intended for low-income families, and was told that if I had a baby in the NICU I was welcome. It was just a few minutes’ walk to a building across the hospital parking lot. A statue of Ronald himself stood on the front lawn, in a pose waving hello–or goodbye–to visitors. I thought about how long it had been since I saw the character in McDonald’s marketing.

I called my wife while standing outside the entrance. The sun had set and drizzle was falling. I gave her a more thorough update on our son and told her I probably had a place to stay for the night, though I didn’t know what I would find inside.

Sunset over a bridge in Danville, Pennsylvania.

My son had begun his NICU stay in an area for babies that required the most attention. It was saturated with medical technology: bedside equipment varied according to babies’ individual needs and included EEGs, ventilators, heating or cooling devices, medication dispensers, IVs or PICCs, and various monitors. (I imagined a storeroom existed nearby with a large quantity of NICU equipment available on demand.) Babies lay in incubators or warmer beds. The electronics made a variety of noises, especially beeps, alarms, and air movement. The lighting was dim, and there were no external windows; night and day were nearly identical. The room vaguely reminded me of the command room of a spaceship in a science fiction movie. Rounds, when doctors and nurses visited every baby’s bed in turn to discuss their care, reinforced that aesthetic. The team arrived with a flotilla of computers on rolling pedestals, with nurses prepared to report to doctors in exchange for instructions and feedback.

Later, when my son’s condition passed the most critical stage, he was moved to a larger room with windows on one end. They admitted enough natural light that the room’s overhead lighting was dimmed or sometimes off. It was quieter and calmer, with many of the same noises but less often. The babies’ beds were a little closer together, perhaps because they needed less equipment. Some still lay in incubators or warmers but many were in cribs. While it was still unmistakably a hospital, it also seemed like a step in the direction of a home nursery. Our son’s bed was next to the windows, which provided an expansive view of the central Pennsylvania countryside — houses, forests, and hills — as well as a large drainage basin adjacent to the hospital. Ominously, a flock of vultures convened there during my son’s first day in this room. A doctor told my wife that the basin was called “Lake Gene”, and I wondered if it was a humorous corruption of gene pool.

Both rooms were utilitarian, designed for treating babies rather than comforting adults, and among the few decorations were NICU quilts. These were modest in size and often draped over an incubator or layered between a baby and their crib mattress. (The nurses monitor the babies to the extent that the familiar no-items-in-crib safety rule is suspended.) Previously I had heard of volunteer groups making NICU quilts but I didn’t understand them until I saw them in context. Nurses offered two of them to us to keep.

The most soothing sound in the NICU was the first few bars of Brahms’ Lullaby, which played over the public address system sporadically, though more often at night. Initially I thought it was a nudge to people in the NICU to keep their voices down for the sake of the babies. Later I learned that it is a common practice in hospitals to play the song when a baby is born. Another NICU parent told me that, and when I asked nurses about it, one confirmed that explanation and the other said the explanation was new to him. I thought about the existential significance: human beings enter the world through this building. On two occasions I heard it play twice in rapid succession, likely signaling births of twins.

The NICU was a large suite that I explored only tentatively, not knowing where I was welcome. I sensed that I never saw its full extent. Aside from the areas where my son was treated, I also saw demo rooms where parents could semi-privately spend an entire day or two with their babies to learn more about caring for them. Each of these had spartan sleeping arrangements for two adults to spend the night. My wife and I would discover that a night with our son in the demo room was less restful than a night with him at home, as the medical equipment remained noisy and the nurses were obliged to check on him every few hours. There was also a conference room where we attended parenting seminars and a lactation support room with a sink where I often washed breast pump parts. (For most of his stay my son was fed through a tube, and my wife followed an onerous schedule of pumping milk for him.) In an alcove near our son’s first bed, I saw two sliding wall fixtures that resembled walk-up customer service windows. Another NICU parent explained to me that the windows connected with delivery rooms in the maternity ward, and babies that required immediate special care were passed through them into the NICU.

At least as much as the facilities, I was struck by the amount of human labor involved in NICU care and the number of different roles. Some I expected, particularly the nurses that were always on duty to monitor and care for him and the doctors that visited him twice a day. Other roles included several medical specialists for aspects of our son’s condition, lactation consultants (for my wife but very relevant to our son), and a care manager (to help both of us parents navigate paperwork). Some of these roles involved daily or bi-weekly rotation, which meant that the people in them changed over time. During a typical NICU visit we talked with the nurse on duty about what had happened since our last visit and perhaps one or two other staff who stopped by. Sometimes they came because we asked to speak with them, and sometimes it was a coincidence that we visited him at the same time. People who previously cared for him and rotated out would occasionally visit for personal interest, just to see how he was doing.

Our NICU demo room.

Ronnie House, as medical staff and NICU parents called the Ronald McDonald House, would be my home for the duration of my son’s hospital stay. A few days after I arrived my wife was well enough to join me there. We spent every night there except one, when we stayed in a demo room in the NICU with our son. Previously my knowledge of Ronnie Houses had been limited to donation boxes in McDonald’s restaurants. The explanation for their existence had always seemed awkward — providing a place for parents to stay near hospitals while their children needed medical care at those hospitals — but I was suddenly one of those parents and it made perfect sense.

The staff member who checked me in showed me to my room, one of 20 in the house. It had two beds and an ensuite bathroom, with most furniture typical for a hotel room. Towels, washcloths, bedsheets, and blankets were donations from the hospital, and the toiletries were donations from hotels. There was no housekeeping, and it would be our responsibility to clean the room on the day we checked out. Our stay was technically free, but there was a suggested donation amount per night of stay. It was stunningly cheap and we paid it in full when we left.

There were also common areas for guests: a living room, a children’s playroom, a large kitchen with multiples of most appliances, a dining room, a sunroom, two TV rooms, and a laundry room with free machines and laundry supplies. Complimentary food was available for most meals, and fridge and pantry space was allocated for each room. My wife and I varied our meal sources with some from Ronnie House, some from groceries we bought, some from the hospital cafeteria, and a few from restaurants.

Our stay at Ronnie House included Christmas, and on Christmas morning we opened the door to our room to discover a large bag of toys for our son. Earlier March of Dimes had also given each NICU parent several toys for their children. I wondered if babies and children who needed hospital treatment at other times of the year received as many things. My son was too young to appreciate many of these gifts, but when he is a few months older they will be ready for him.

Five minutes’ walk across the parking lot was the hospital, with another set of spaces — the NICU plus others — that became familiar to us. We often had lunch in the hospital cafeteria, and upstairs overlooking it was a lounge where we took daytime phone calls or used our laptops when certain tasks from our jobs couldn’t wait. I went exploring in the hospital soon after I arrived, and when my wife joined me I showed her things I had found: a piano for the public to play, a nondenominational chapel, gift shops, and exhibits of the hospital’s history. Once on a walk we inadvertently found an express elevator that served the hospital’s helipad, and we knew that our son must have ridden it on the way to the NICU.

Our room in Ronnie House.

The common areas of Ronnie House were one of three places — along with the hospital cafeteria and the NICU itself — where I met other NICU parents. There was a loose community of us who were willing or enthusiastic to talk with others. Conversations often began with one parent mentioning that they had seen the other around and speaking about their baby’s condition, and then the other parent reciprocating with information about their baby. Through these conversations, parents provided informational and social support that the medical staff, bound by privacy laws, could not. When I explained those interactions to friends who had NICU babies a few years ago, during the height of the COVID pandemic, they expressed surprise. The idea of socializing with other NICU parents was entirely foreign to them.

Bed proximity influenced social connectivity. Early in my son’s care I started talking with Nicole (name changed to protect her privacy), a parent whose child was in the bed next to my son’s. We became friends, and when my wife arrived they quickly made a strong connection too. When our son was moved to a bed in a different room we continued visiting each other often, which the nurses seemed to tolerate rather than encourage. (I remember once greeting her and then reassuring a puzzled nurse in rapid succession: “Hi Nicole! / Yes, she’s welcome here.”) One concern was cross-contamination of pathogens, and accordingly, I used hand sanitizer when I visited even though I rarely touched more than a chair. We stayed in contact when my son graduated from the NICU and her baby remained there longer.

I spoke with other NICU parents in varying amounts. One couple had twins in NICUs located several hours apart, and they lived in between them; together they alternated visiting each twin. Another couple with twins had one in the NICU and the other not, but the visiting rules prevented the twin that had been released from the hospital from coming into the NICU. One couple had a baby born with Down Syndrome. Another baby was born at home with a midwife who quickly realized advanced treatment was necessary, and she ran out of the house carrying the baby to contact help, as the house had no phone service. Stays in the NICU varied from one night to several months. Preeclampsia was common among the mothers, and most babies were premature.

Most of the parents I saw in the NICU were women. A few that I spoke with made offhand jokes to me about men, as a gender, being irresponsible. I understood their frustration at personal circumstances and large-scale social patterns, and worse forms of discrimination exist, but I wished they hadn’t targeted my gender. I was there for my son.

Central Pennsylvania has a large population of Amish people, and I spoke with Amish parents. Prior to my son’s time in the NICU, all the interactions I had with Amish people were transactional: contracting them to rebuild the decks on our house, buying food from them at farmers’ markets, or otherwise being a tourist in their spaces. We saw each other frequently, and like other parents, just started talking. Common topics were our offspring, where we lived, and our work. Contrary to the gender ratio of non-Amish parents, Amish fathers showed up in the NICU nearly as often as Amish mothers. Some Amish parents stayed locally, even in Ronnie House, and others hired a non-Amish person to drive them from home.

Even though we met many parents, it wasn’t uncommon that my wife and I were the only parents within sight in the NICU. Others may have had greater obstacles to visiting: lack of leave from their jobs, lack of support from their partner, lack of childcare for older siblings, or lack of transportation. It’s also possible some visited at times that we didn’t. Unlike the rest of the hospital, the NICU’s visiting hours were 24/7, including all holidays.

My son’s second NICU bed.

Nurses sometimes remarked that my wife and I were in the NICU often or “all the time”. Often may have been accurate relative to other parents, but all the time felt far from true, even figuratively. Nicole was in more often than we were, though her baby’s condition remained precarious for much longer than ours’. I sometimes thought about the enthusiasm that a nurse showed when I told her at the end of my first visit to my son that I needed to go. She emphasized that I should take care of myself, implying that was a problem for some NICU parents.

On a typical day my wife and I were in the NICU for four or five hours total, consisting of a visit in the late morning, a visit in the afternoon, and sometimes a visit in the evening. The morning and afternoon visits coincided with two of our son’s eight daily care times, when nurses (or, increasingly over time, we parents) would perform tasks such as taking his temperature, changing his diaper, giving him medication, and feeding him. Our morning visits sometimes coincided with rounds, but their timing was difficult to predict.

Early in my son’s NICU stay I transitioned from wondering how much time I should spend in the NICU to wondering where all my time went. Meanwhile, friends asked what a typical day was like and I suddenly felt self-conscious. The bedside vigils that some may have imagined — and that I also might have imagined prior to my son’s birth — were logistically and even physically prohibitive. Yet the nurses praised us for how often we were there.

Broadly speaking, everyday tasks took more time. I was living in a new place with barely more than I could fit in my suitcase and only vague predictions for how long I would be there. My wife and I had to coordinate our activities more than we would at home, which resulted in many waiting periods of a few minutes throughout the day. Pumping milk and washing pump parts often interrupted our schedule. We spoke on the phone with our parents and hosted their visits to meet their new grandson. We also had to navigate medical paperwork and perform small amounts of work for our jobs, even though we were both on leave. All these activities happened with the emotional backdrop of our son being in the NICU.

Once our son’s condition was on a stable positive trajectory, my wife and I went on outings in the afternoons or evenings. Some were practical, like shopping, but many were recreational to support our morale. (Mentally I referred to these trips as “enrichment”, remembering how I had heard the term used in reference to the care of zoo animals.) We explored nearby towns: Danville, with its historic architecture and a riverside walk; Ashland, home to a memorial for mothers and nearby a geyser; Bloomsburg, where we found an excellent Italian restaurant. We visited what remained of Centralia, a town infamously abandoned due to a coal mine fire under it. We visited the confluence of the west branch and the main branch of the Susquehanna River and saw how their colors remain separate for a short distance before merging. On a rainy evening we visited a drive-through Christmas lights display in a campground. On a cold afternoon we explored an Amish-run antique shop, where I bought a first-edition copy of Sinclair Lewis’ Main Street, a book I had read more than a decade ago and still think about often. On my own, I took nighttime pictures of industry and urban decay near Shamokin Dam. I am a photographer in my spare time, and all pictures in this article are mine.

Sometimes my day would end with a nighttime solo trip to the NICU to drop off milk from my wife (a literal milk run), and those were some of my favorite visits. The NICU was quieter at night, with fewer visitors or medical staff, and spending time with my son seemed more natural then. If he was asleep I listened to the nurses’ banter, casual and witty in anticipation of long overnight hours together. One evening I had a conversation with a nurse about my son’s progress and my dedication to him. I thought about the mixture of planning and uncertainty my wife and I had coped with in our many years together. We had plenty of both, and our son’s birth and subsequent NICU care had become eminent examples.

The Mothers’ Memorial in Ashland, Pennsylvania.

About halfway through our son’s NICU stay I stopped asking medical staff how long they thought he would be there. Early estimates were “one month” or “more than a month”, but ultimately it depended on how quickly he could improve, and they were hesitant to predict. I was fortunate to have a parental leave of absence from my workplace, and I had reached a stable pattern of living at Ronnie House and visiting my son.

The number of medical interventions to support him gradually decreased, and tubes and wires were removed from him. One piece of equipment lingered longer than the rest, the last item that he needed to rid himself of before he could be discharged. I pictured walking up to his bed one morning to find it gone, having been removed since my last visit, and that was how it happened. My wife walked in a minute later and I told her something had changed. She first noticed something unrelated, and then realized the significant absence. Rounds stopped by a few minutes later, and the doctor explained that if our son’s condition remained stable he would be discharged the next day. I brought in the infant seat from my car to allow it to warm up.

During the preceding few days we had sensed he was close to discharge. One health statistic was responsible for his continued need to stay in the NICU, and we watched it improve day by day. The doctor who had recently rotated in to oversee his care said she expected our son to go home by the time she rotated out a few weeks later. The nurses had begun guiding us through discharge paperwork and procedures without mentioning a date or implying specific plans. One evening we sorted through the gifts our son had received from Ronnie House, March of Dimes, and the NICU to repack them for the trip home.

On the morning of our son’s discharge we had our usual breakfast in Ronnie House, cleaned our room, and offered our remaining groceries to other residents. We received confirmation via phone that our son was ready for discharge. We made the suggested donation for our stay and moved out, loading our cars. It took longer than we had planned, and afterward we went to a lunch appointment with Nicole in the hospital cafeteria. While we ate, the NICU called us with the implication that we were later than they expected: were we aware that our son was ready? Yes, we were, and we would come in a few minutes to pick him up.

Once we arrived in the NICU the final steps of discharge took still longer. There was more paperwork and a demonstration of how to give our son a couple medications he would need at home. We gathered many things from our son’s bedside area, including personal belongings we had brought for him and many baby care supplies that the nurses had offered to send us home with. I made a trip to my car with several hospital bags and then returned. On our way out, we took a family photo with our son at the NICU Graduation Wall. We wrote “28” on the “days” line before asking our care manager to take the picture for us.

My wife and I agreed that I would drive our son home (we had arrived in separate cars), but she wanted to be part of his first car ride. I brought my car to the building entrance and I drove the three of us the short distance to her car, dropping her off. From there it was the two of us alone. He was fussy, and I stopped at a rest area to spend time in the back seat with him, which temporarily calmed him. We later concluded that we had overdressed him and he had become too warm.

A week later, my wife and I had a video call with Nicole to catch up. Her baby continued to struggle, but she referred to being a NICU parent as an “adventure”, using a word that I had thought to describe the experience but felt uncertain saying aloud. There were elements of an adventure, even if it wasn’t one I would have wanted for anyone. I sometimes reflect on the fact that I may never see the inside of a NICU again, and how it was both a place of deep concern and a privileged space. I’ve told people that in spite of my long history of travel my first trip by air wasn’t until I was fifteen; in contrast, my son flew on a helicopter — a vehicle I’ve never flown on — when he was a few hours old. I’m looking forward to adventures with him on our own terms.

My wife and I owe a great thanks to many people: the staff at Mount Nittany Medical Center for their quick actions to save our son’s life, the staff at Geisinger Medical Center in Danville for his four weeks of treatment there, the Ronald McDonald House in Danville for giving us a place to stay near the hospital, and many NICU parent friends.

Any views expressed in this article are mine alone and do not reflect my employer.

You can follow me on Bluesky.

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