After a few weeks at home, we finally had something of a rhythm established, and the kids’ sleep stabilized to the point where — sometimes — we could actually both go back to bed after that one or four a.m. wakeup and feeding. I began to transition from leave, increasing the number of memos, decisions, meetings, and appearances I was handling. And Chasten and I embraced “dad life” in full force: comparing swaddle techniques and mastering the diaper change, sorting through the confusing array of stroller accessories, even acceding to once-unthinkable family decisions like trading in both our cars to get a minivan that would hold two dads, two kids, and two hounds on long drives between Michigan and Washington.
By October, we had started to feel more confident and comfortable with all the routines (and the surprises) of parenting. Then one day, the kids got a cold. Soon it was a cough. Then Penelope started to have trouble breathing. Over FaceTime, our doctor expressed concern about the way her belly was retracting under her ribs as she worked to take in air. Chasten drove her to the Emergency Room while I stayed home with Gus. His skin took on a mottled look, and by the next day he was admitted to the hospital too. Just as we had during our first days with them, we again learned to live out of a hospital room, this time in Traverse City. We would take turns shuttling supplies from home and sleeping by the kids’ side, and I would try not to distract the nurses when the phone rang with a work call.
They were sick with a respiratory virus called RSV — and soon, so were Chasten and I. For us it just meant a nasty cold, but for premature infants like them it was a serious threat. They needed oxygen for a few days before being well enough to be discharged — just in time for me to head back to Washington for a day of important in-person meetings and events. I flew back that evening and found Chasten, sick and exhausted, with both kids curled up on his chest, and persuaded him to go to bed while I took the overnight shift.
We tried to recover our balance, thankful that at least we seemed to be out of the woods medically. But we weren’t. That Saturday, after a weekend White House Zoom meeting, I was stirring chili in the crock pot at home in Traverse City and looking forward to the normalcy of watching the Notre Dame game, when Gus’s breathing took a turn. The belly retractions were happening again, and soon Chasten was once again taking one of our children to the hospital while I stayed home with the other.
Two liters wasn’t enough oxygen for Gus. They tried four, then more. Chasten’s mother stayed with Penelope for a while so I could join him in Gus’ room, where we watched things go from bad to worse. Periodic visits by a single nurse turned into anxious and repeated consultations by a large and growing group of respiratory therapists, nurses, and doctors constantly in different combinations, always asking what seemed like the same questions.
We started hearing words like “serious” and then “critical,” and soon the doctor was recommending we immediately transfer Gus to a full-scale children’s hospital in Grand Rapids, about a hundred miles away, and place him on a ventilator. Next thing we knew, the doctor had determined that the ventilator couldn’t wait — Gus would need to be intubated now and then transferred. To spare our emotions, he encouraged us to step outside the room while they did the procedure, saying “it’s not a pleasant thing.” We clutched each other in a long hug in the hallway standing just outside the door, trying through tears to reassure each other over the sounds coming from inside his hospital room.
The situation would typically call for a medical helicopter, but bad thunderstorms meant the chopper couldn’t take off. I prepared to go back home to look after Penelope while Chasten jumped into the ambulance to accompany Gus for the trip down, fighting off nausea and holding onto Gus’ tiny hand as it sped down the roads for nearly two hours amid the gathering storms.
The next morning, unable to believe all this was real, I threw together a diaper bag, a couple of suits and whatever else I could quickly assemble for an unknowable number of days away. I buckled Penelope into her car seat in the minivan, and started driving south towards Grand Rapids. Once there, we set up shop in a hotel room just down the road from the hospital, turning to friends and cousins who fortunately lived nearby and offered to periodically watch our daughter while I joined Chasten in Gus’ room.
Walking into that room for the first time, I was both reassured and frightened by what I saw: all the apparatus and technology of today’s pediatric ICU, with more monitors than I could count and various tubes and wires running from inscrutable pieces of equipment into the small bundle that was our son. He looked impossibly tiny, even more vulnerable than when he had more or less fit into the palm of my hand, here as he lay on a bed that was designed for a child but still seemed absurdly big for him, sedated and swaddled in a blanket while a nurse monitored his vital signs.
Most parents don’t start off expecting to be among the ones who know their way around a children’s hospital. But suddenly it’s you. Soon the hospital was our new home base, and in different combinations, through days and sleepless nights, the two of us cycled between Gus’ bedside in the ICU room, the cafeteria with its six-cheese lasagna special, and the nearby hotel with Penelope’s bassinet, endlessly grateful to the friends and family who helped us cover down.
Parenting is lots of things, and one of those things is terror. You watch your infant, sedated and surrounded by wires and tubes and monitors and medical personnel coming and going constantly, and wonder how we could live in a universe where a few weeks could be all that a child gets on this earth. (In one dark moment, I wondered if my weeks of parental leave would amount to the entirety of my time with our son, this beautiful infant whose face I had seen for the first time just weeks earlier and whose life had now come to matter to me as much as my own.) I prayed. I looked for meaning in tiny fluctuations in the vital signs on the monitors. I thought of my father, whose last days played out on a ventilator in an ICU room like this as he lost his battle with lung cancer, though Chasten repeatedly reminded me that this was a completely different situation. We tried not to hassle the medical staff with our million questions which were really just one question. And they patiently repeated the one honest answer, which was that with this kind of virus, the only way you know it’s getting better is when it’s stopped getting worse.
Becoming parents had quickly and totally redefined our sense of reality and of our place in the world, but now that reality seemed to be closing in on us. Sometimes it felt like the whole world had become the four walls of this hospital room. But the rest of the world, and its needs, hadn’t stopped, starting with our daughter. We alternated taking time at the hotel to take care of Penelope. Our babysitter had made it to Grand Rapids and set up shop in our room at the Embassy Suites, helping to share the load.
Work couldn’t wait either. My leave had already been winding down, and now I was tending to issues that couldn’t wait or be delegated. Sometimes, that meant taking a deep breath while looking down at my unconscious two-month-old son, on life support but still strong enough to reflexively keep his grip on my finger, and then realizing I had two minutes to get into a Zoom meeting with transportation stakeholders, a phone call with a Senator, or a TV interview. I would gently unpeel his tiny fingers from around mine and turn away from the bed. I’d put a tie on, go to a nearby room (or in one rushed case, the bathroom), open the laptop, pick a virtual background so no one would be distracted by seeing that I was taking the meeting from a hospital, and get to work.
A wave of container ships was bearing down on the West Coast after multiple factory shutdowns in China had stopped and then suddenly restarted production there almost all at once, straining the limits of the measures that we had been working on since early summer to help companies’ supply chains adapt to the new dynamics of Covid-19. Meanwhile, every time I glanced at a TV, there were reminders that this was an intense period in the formation of what would become the Bipartisan Infrastructure Law. One night I found myself calling House members late into the evening from the hotel room, checking in to shore up support and collect input on concerns and sticking points that needed to be relayed to the White House. Penelope, wide-awake, was not in a good mood, but would refrain from screaming on one condition: that I hold her. I remember looking up at our reflection in the dark window, my daughter in one arm while my free hand was taking notes on the feedback from whichever member of Congress I was speaking to on the phone.
Days blurred together, the machines kept beeping, and we lived in the space between hospital and hotel, between cafeteria visits and Zoom calls, between fear and boredom — a swirl that made me think of our pastor in South Bend, who in his sermon at our wedding had described love and marriage as playing out in the space between “the sublime and the mundane.”
And then, after about a week, it stopped getting worse. It wasn’t going to end like it did for my father. Gus stabilized, and day by day, started clearly getting better. The moment came when the medics were confident he could come off the ventilator, or at least try. I made sure to keep a space in the work schedule between Zooms and calls so I could be there when they took out the breathing tube (also not a “pleasant thing,” but a very positive milestone, and I needed to be there for that) and put him on regular oxygen. As Chasten and I took turns sleeping in that room, a new hope came into our hearts as we followed the process of weaning the oxygen down and then away completely, and gradually withdrew the fentanyl while taking care to minimize symptoms of withdrawal, then begin coaching him to feed again from a bottle and not a tube.
This content was originally published here.