I Brought My Premature Baby Home With NICU Memories I Didn’t Want
This is a happy story about six months of unmitigated terror.
On close inspection, an incubator is just a clear plastic box connected to cords and wires that are, in turn, attached to machines that beep, sometimes very loudly. When your newborn daughter is inside of an incubator, you learn to appreciate the beeps. You’re comforted by their metronomic persistence. I sat and listened to the beeps for hours, watching my tiny girl struggle to make it over the invisible threshold of life.
Daisy Emilia arrived at 26 weeks, three months shy of her expected due date. We were told that fewer than one percent of babies are born that early in America and that we should feel lucky she survived. But we didn’t feel lucky. We felt fear, anxiety, confusion, and maybe even anger. Never luck, even though we were lucky. Babies born less than 25 weeks of gestation have a lower survival rate than those who are 25 weeks and up because their lungs lack the ability to produce surfactant, which helps the tissue to absorb oxygen.
Daisy only made it to the incubator because of my wife. She didn’t feel the baby move on New Year’s Day so on January 2 we went in for an emergency check-up. Tests eventually showed the appearance of a clot, which was preventing the baby from getting nourishment from the placenta. Less than four hours later, the checkup turned into an emergency C-section delivery.
When she came into this world, Daisy weighed one pound and three ounces, making her a bit smaller than a ripe pineapple. Her feet were barely wider than the diameter of a quarter and her palm could barely cover the tip of my finger. I couldn’t get over her impossibly small fingernails. I still haven’t.
But when she cried, a tiny roar came out. I’ll never forget that sound. Doctors were in awe that she was breathing on her own, let alone yowling. But she was. I saw Daisy right after she came out of her mom for what felt like a moment, but it was long enough for me to snap a photo. Then she was whisked away, cleaned up, and connected to all those wires in that beeping box.
Daisy was our second child, so my wife and I were familiar with the typical fears of traditional childbirth. We knew we were prepared until, suddenly, we knew we weren’t.
No one plans for a premature baby. It’s an emotional car crash. You are overwhelmed by so many doctors and nurses speaking to you. And you are trained — by doctors and your own doubts — to fear the worst. Whenever someone approached me in the hospital, I always expected the worst possible news. That never went away.
We rearranged our lives to be at the hospital. At the end of each day, we would pick our toddler up from daycare and head to the hospital. Our nightly routines were either destroyed or performed uncomfortably in a waiting room. Nightly family dinners took place in the cafeteria; weekends were spent in shifts at the hospital. Staring at Daisy through her plastic walls became our new normal.
My wife and I tried to make light of the situation. We’d joke, morbidly, about how we would just slip Daisy into my wife’s purse and run home. But jokes didn’t work. The best we could muster was a vague sense that this was just a stage, an unfortunate preamble to our little girl’s happy life. We cried and looked at our daughter, her face strapped to a NAVA ventilation machine. We listened to the beeps and tried to accept that there wasn’t a secondary due date or any certainty about when Daisy might come home. That’s a preemie thing: There are no dates, no predictions.
There was nothing concrete for us to cling to, nothing for us to circle on the calendar.
Every day came with a new unknown emergency to tackle, a new tiny nightmare to endure: Blood transfusions (she had an infection), signs of jaundice (her liver struggled to break down bilirubin), limited vision (a common issue with preemies), massive acid reflux (underdeveloped esophagus), and explosive diarrhea (unrelated to anything, actually, and a bit funny).
These trials were exhausting but not unique. The NICU is a revolving door of families handling trauma. Some families were in and out in a few days; others were there much longer. We met a couple who knew their newborn was terminal. They were just waiting for the beeps to stop.
Hope came for us in Daisy’s small developments. After a few days, I could open the incubator and put my hands inside to give her “preemie hugs”— essentially cupping my hands over her. Ten days after she was born, those preemie hugs turned to limited-timed holds outside of the box, albeit while she was tethered to the NAVA and heart rate machines. Those holds turned into daily diaper change rituals. It started to feel like we were home — almost.
As Daisy gained weight and took down larger feedings, she started to shed some preemie characteristics. Soon, the NAVA was gone and she upgraded to a CPAP. Her jaundice was gone and her vision improved. Her diarrhea remained constant and, more worryingly, so did her acid reflux. She struggled to take her mom’s milk. She would choke. She would spit it up. She was agitated after a feeding and would gurgle for hours and wiggle in discomfort. Finally, the nurses deployed a special baby formula and she kept the food down.
On March 4, 2018 Daisy went off the CPAP. A few weeks later, she outgrew the incubator. She was moved to another plastic box that the nurses dubbed a crib. The difference was small but meaningful. The container didn’t have a lid and was padded with blankets for her comfort.
Finally, 133 days after Daisy entered the world, she was cleared to go home. When my wife and I received the news we rushed out of work, arriving home at exactly the same moment. We held each other, cried, then laughed hysterically.
Daisy has been home for 129 days, meaning she’s still spent the majority of her life in a hospital. But one of those numbers will increase and the other won’t. There’s such comfort in that.
There will be other hurdles. But right now, none of that matters. What really matters is that Daisy is a calm, healthy baby. She rarely cries and her smiles are huge. I know she isn’t aware of what she’s been through, but I am, so it’s hard for me to not read a broader message into her obvious joy. It’s impossible for me not to believe she’s just really happy to be home.