The first time I took my daughter, Lucy, for a walk in the park in her stroller, I was nearly paralyzed by fear. I went through a mental checklist of contingencies and the medical supplies I would need to address each one. I made sure my cell phone was fully charged and repeatedly checked that I had my house keys before pulling the front door shut behind me.
This was early spring 2015, when Lucy was about 9 months old. Lucy was born the previous June at 26 weeks gestation: she weighed just one pound, six ounces. She had to be delivered by emergency C-section three months before her due date when my wife was diagnosed with severe preeclampsia and a potentially fatal disease called HELLP. Lucy was intubated for three weeks, meaning she started life on life support, and spent 141 days in the Newborn Intensive Care Unit at Beth Israel Deaconess Medical Center in Boston.
When we were finally able to bring Lucy home for the first time, she still required 24/7 oxygen support through a nasal canula and was being fed exclusively by gastro-intestinal feeding tube, or G-tube. We had to continuously monitor her heart rate and blood-oxygenation levels using a Pulse-Oximeter, which had a probe that wrapped around her foot. There were four hours each day when we weren’t feeding her by tube, but she was otherwise attached to three pieces of medical equipment at all times. As my wife later observed, coming home was a change in location, not situation.
We also brought Lucy home at the worst possible time of year: early November, the middle of cold and flu season. The NICU nurses said our first winter home would be “preemie prison,” and that is exactly how it felt. All of our physical and mental energy went into keeping Lucy alive and protecting her from germs that could land her back in the hospital. The only time Lucy left the house was for weekly appointments with her pediatrician and pulmonologist.
Despite our best efforts, Lucy was admitted to Boston Children’s Hospital four times that winter. The first, heartbreaking admission occurred just 10 days after she was discharged from Beth Israel. The second admission was in mid-December, and we ended up spending our first Christmas together as a family in the hospital, which seemed strangely fitting. She was also admitted in January and again in February. We were frustrated and confused and didn’t know why we couldn’t keep her out of the hospital.
Whether at home or in the hospital, our nerves were frayed from the constantly alarming medical equipment. We could not keep our eyes off the Pulse Ox, with its ominous red numbers telling us Lucy’s oxygen saturation level. When her “sats” dipped too low, the Pulse Ox alarm came blaring on and we would have to check whether the probe was getting a good read, the cannula had come out of her nose, or she was truly “de-sat’ing” and needed more oxygen. I wrote a piece at the time called “The Emotion Machine,” which intentionally reads like a dystopian novel. It begins by asking readers to imagine living with a machine that controls their emotions at all times day and night.
That March, Lucy made it through her first calendar month without a hospitalization. After a run of warm days, I was determined to take her for a walk in the nearest park, located about seven blocks from our house. After two days of making excuses for not going, I said to myself, “This is ridiculous. I should be able to take my daughter for a walk outside!” This mundane activity of pushing our baby through the park in her stroller had come to symbolize everything we had been denied from the moment we became parents.
I went through my checklist. I switched Lucy’s cannula from the oxygen concentrator to a portable oxygen tank. I checked that the tank was full and wasn’t leaking. I made sure the Pulse Ox battery was fully charged and that my cell phone was, as well. I made sure the diaper bag was packed with regular baby stuff, as well as backup medical supplies: Pulse Ox probes, extra nasal cannulas, G-tube dressings and tape, scissors, meds, syringes, inhalers, and spacer. Then I checked that I had my house keys one last time before carrying Lucy out the front door.
The Pulse Ox started alarming before we even reached the end of our block. I stopped to assess the situation and it seemed the probe was just not getting a good read. I pressed on. When we were about three blocks from the park, the Pulse Ox started alarming again. The cannula was still in her nose, and the probe seemed to be getting a good read, which meant that something else was off. It suddenly felt like we were dangerously far from the house. I turned around and headed home with a quickened pace. What we would learn in the coming months, but did not yet know, was that the Pulse Ox doesn’t work very well while being pushed along a bumpy city sidewalk.
I was determined not to be defeated, so the next day, I tried again. This time we reached the park. After doing one turn around the ball fields, I parked myself at a wooden bench at the edge of the playground. I looked at Lucy and her myriad wires and tubes. I breathed in the spring air, but could not stop looking at the red lights of the Pulse Ox. At a nearby bench, three mothers with strollers were chatting while sipping their coffees. They were only about 15 feet from us, but it felt like they were miles away.
In the coming years, my wife and I often found it difficult to connect with parents of healthy, typically developing kids. From the moment we became parents, we have travelled such a different path, one that took us in and out of hospitals and numerous clinics and required us to be Lucy’s caregivers first and parents second. Instead, we bonded with other parents of medically complex children, the folks who “just get it,” who keep their kids away when they’re sick and don’t question our near religious devotion to hand sanitizer.
Lucy is almost 5 years old now and has come a long way since that spring day in 2015, overcoming significant developmental challenges. A few weeks ago, I was sitting on a park bench at the edge of a playground while sipping my coffee. I hadn’t ever done this before: As recently as last fall, she still required assistance to navigate even the toddler play structures. But then, for the first time, I sat back, drank my coffee, and watched her play.
Roy Lincoln Karp is a Boston-based freelance writer, educator, and columnist for the Dorchester Reporter.