Advice for coping with the NICU from a dad who’s been there

Chugging lemon water, sleeping halfway upright, yanking those compression socks up to her knees, massaging her legs — we tried everything. Then, it turned out that her difficulties and insane level of discomfort weren’t routine after all. A 31-week checkup became an immediate trip to Northwestern University’s Prentice Women’s Hospital in downtown Chicago with a severe case of preeclampsia and an induction about 12 hours later.

While doctors worked to contain Lexi’s sky-high blood pressure, a doctor from the neonatal intensive care unit spent 15 minutes reassuring us of the odds that Walter — we had his name picked out — would lead a healthy and happy life. The next day, Friday, Dec. 3, he arrived, weighing in at 3 pounds 12 ounces. They wheeled him in to meet me in the empty operating room where I was waiting during the emergency Caesarean section. Three minutes later, they wheeled him away to the NICU.

Data from the Centers for Disease Control and Prevention show that about 10 percent of births in the United States are preterm, defined as occurring before 37 weeks of pregnancy. Despite that initial pep talk about Walter’s chances, our quest for information on premature babies led to more questions and more tears as we discovered the potential for breathing problems, feeding difficulties, cerebral palsy and increased odds of death and disability.

If you and your partner find yourselves digging down that black hole of anxiety, take a breath. That’s the advice that we heard from Selma, the attending nurse who greeted me on Walter’s first night. “It takes a team,” she said as I struggled to talk. “You have to remember to rest, to eat, to drink water and to take a breath, Dad.”

There is no guidebook for dealing with the fear that the acronym NICU can create, but here are three of the most valuable lessons my wife and I have learned.

Being there all the time can be too much

There is a 24/7 sense of duty involved in a NICU stay: Your child is there, so you feel you should be, too. That belief guided us in the early days as we spent marathon sessions next to his Isolette (an aquarium-style incubator cube that we deemed his “house”), taking him out to hold him and listening to updates from pharmacists and respiratory specialists. It feels like you’re doing your job — how I imagine it will be when we show up for Walter’s soccer games or school plays. Our presence there seemed like the baseline for being a good parent.

When “there” is the NICU, however, you are in for an emotionally exhausting experience. Red warning signs flash on monitors, bells sound when a patient’s heart rate dips or oxygen drops, and nurses rush in to address the latest scare. After two weeks of feeling like early risers who showed up to the office before anyone else, Susan, one of our nurses who sensed the days were taking their toll, reminded us that we were in a shrinking window of having no one else at home.

“We’re the most expensive babysitters you’ll ever have,” she said. “Take advantage of it while you can.”

Lexi and I adjusted our schedule to allow a proper one-hour lunch break. We planned a Christmas Eve date night. We alternated visits when one of us felt more tired and frustrated. After one particularly stressful visit with two desats — the abbreviation for when oxygen saturation levels are dangerously low — we spent the late afternoon and evening watching bad holiday movies. When you’re in the NICU, remember to take care of yourself — so you can be ready to take care of your child when it’s time to come home.

The pathway to discharge is not a straight line on the calendar

That time-to-come-home question will be what keeps you up at night. When Lexi was a few hours away from her first labor-inducing dose of medicine, a doctor told us to plan for Walter to be in the NICU until his due date, a 59-day stay. A recent study at our hospital found that the mean hospital stay for a preterm baby was 17 days.

In the early part of Walter’s stay, he seemed on pace to break all those timelines and set a record for fastest transition from preterm delivery to at-home crib. His time with a feeding tube was a blip before he was drinking everything from a bottle. Within 10 days, he moved to a new room, designed for almost-home infants. Doctors told us to be ready to take him home by Christmas, when Walter would be just over 3 weeks old. Then, those desats began. Time shifted into reverse. He needed a small amount of oxygen support, then more support from a bigger machine. Christmas passed, then New Year’s Day.

As you prepare for trips to the NICU, erase the concept of time. Preterm babies have to satisfy a number of key life capabilities: gaining weight, eating by mouth, maintaining a temperature and avoiding any of those alarm-bell events. Focus on those milestones, and don’t count the days on the calendar.

Avoid comparing your baby to others’

While each baby has their own room in the Prentice NICU, the rooms are separated by curtains. Everyone’s latest update is public information. When another dad brings in a car seat, his child is likely heading home in the next few days. When a nurse pages a doctor for a circumcision, that boy is likely heading home in the next few hours. We watched our bay of seven rooms turn over at least twice — I lost count — and there was a feeling of being the last remaining guests in a hotel where no one wants to stay.

We are all trained to compare ourselves to other people — how rich they are, how smart they are, how their vacation photos look — but this is an area where comparison is a soul-crushing endeavor. Instead, let the NICU instill a level of compassion you never knew was possible before you found yourself in the gray area of being overjoyed that you are all parents and overwhelmed with worry about your baby’s future. Be everyone’s cheerleader. They will be yours, too. Before another couple took home their son — a neighbor of Walter’s who spent his first few days of life on a ventilator — they handed us a card with the promise that our kids will do big things in the world one day.

As I write this, Walter is 1 month old. He has yet to see his nursery lined with giraffe wallpaper and stocked with a library of books about trucks and bears and the history of hip-hop. Instead, he is in Room 1065D. On one hand, I could describe his current home with how I feel about it: It has a bland blue paint job and a maze of tubes and cords connected to him. Visiting makes me cry. But on the other hand, Walter is already enjoying the fruits of life: He has his own place with a sweeping view of downtown Chicago and a gaggle of kind and caring women who tell him they love him. We are proud parents.

Author’s update: Walter was discharged from the NICU on Jan. 8, at 37 days old. While his first few weeks at home included frequent doctor checkups and a follow-up appointment for a concern about his heart, he is now growing, smiling and thriving. He now weighs just under 14 pounds and recently turned 4 months old. Despite going through one of the hardest times of our lives, my wife and I are grateful for the care and education that the staff of NICU medical professionals gave Walter and us.

David McMillin is a Chicago-based writer and musician. Follow him on Twitter: @davidmcmillin.