Life in the Bubble

How preemie parenting helped prepare us for COVID-19.

An essay by Roy Lincoln Karp

I used to be anti-Purell.  I never used hand sanitizer unless it was offered to me in a social setting.  I believed kids needed to play in the dirt and build up their resistance to garden variety bacteria and viruses.  Then my wife and I had a micro-preemie born over three months early and hand health became a veritable religion.  Our experience caring for our daughter Lucy in the Newborn Intensive Care Unit turned us into certified germophobes.

The world outside the antiseptic NICU was suddenly a cesspool of germs.  In my mind, every door handle and elevator button could have just been touched by someone with the flu or some other insidious respiratory virus.  I began to carry a travel size bottle of hand sanitizer with me at all times, and I used it obsessively.  Stepping outside without one filled me with palpable dread.

After 141 days in the NICU, we were finally able to bring Lucy home, but it was start of cold and flu season, the worst time to bring home a preemie.  Lucy still required continuous oxygen support and vital sign monitoring, and she was fed exclusively through a surgically implanted feeding tube. We were finally taking her home, but we still had to provide the same level of medical support she had been receiving in the hospital.  Walking through those NICU doors with Lucy for the first time brought mixed emotions, chief among them fear about the germ-filled world to which she was now exposed. 

Lucy is five now and attends kindergarten at a public school.  She has come a long way since leaving the NICU, but we remain vigilant about hand health and germ control.  Daily decisions require us to balance health risks with Lucy’s need for social interaction. 

As we face a global pandemic brought on by the COVID-19 virus, hand health, better cleaning protocols, and the need for social distancing, once our unique domain, have become the topic du jour for all.  Suddenly, everyone is living in our germ-filled world.  We are back in the protective bubble we spent years desperate to escape, but this time, the rest of the world is in there with us.

With our specific and relatively unique experience now generalized for all, I can’t help feeling as if our entire life as parents to a medically complex, former micro-preemie has been flipped inside out.  For years, we have felt that most people just didn’t “get it” and probably never would.  Our parenting experience was so outside the norm that others simply could not understand the terror inherent in knowing Lucy’s fragility, or the extent to which we worried about her health every single day.  Even close friends and family who knew the essential facts – the two plus years on oxygen, the feeding tube, the twelve admissions to Boston Children’s Hospital – still could not understand our lived experience day in and day out: the unrelenting brunt of stressful decisions both big and small. 

During the first few years of Lucy’s life, we talked about having two modes of existence: “crisis mode” and “extreme crisis mode.”  Perhaps it started as a joke, or a short-hand way to describe our life to others when we were too exhausted to explain it in greater detail.  But this simple, binary formulation helped us to better comprehend our own situation. 

Crisis Mode was our new normal: after all, we were taking care of a former micro-preemie with Chronic Lung Disease.  It was evident in the spare bedroom that we converted into a medical supply closet filled with stacks of plastic bins for storing nasal cannulas and tubing, medical tape, G-tube dressings, syringes, Pulsox probes, and dozens of other items that were suddenly of vital importance.  It was evident in the giant oxygen concentrator that hummed like a piece of loud industrial machinery all day long.  It was the stress of taking Lucy, attached to three pieces of medical equipment, to weekly pediatric and pulmonary appointments.

Extreme Crisis Mode, in contrast, was when Lucy came down with an acute respiratory virus and her lungs just couldn’t handle it.  At these times, all other concerns, interests, and needs went out the window.  My wife Courtney and I would begin a dance of frenetic yet precise movements, making a thousand coordinated decisions almost without speaking to one another.  Turn up her O2, make sure the Pulsox probe is getting a good read, take her temp, give her a saline nebulizer treatment, page her pulmonologist, give her three back-to-back puffs of steroid inhalers.

On at least ten occasions, we just could not keep her at home.  Her pulmonologist “called in an expect” to let Children’s know Lucy was coming back in and we quickly pulled together our “go bag.”  By that point, it was a sort of relief to have the support of 24/7 nursing care and the chance of sleep.  During one of these admissions, Courtney expressed her remorse at what she perceived as a failing in our caregiving.  The nurse on shift that night was having none of it.  She remined us that nurses typically work three 12-hour shifts per week.  “You guys have been doing this work 24 hours a day, 7 days a week without any breaks.” 

It was the kind of gentle lesson nurses have been teaching us since Lucy was born.  I’ve been thinking about these lessons a lot lately and believe they have much to teach all of us in this strange new world in which we are living.  Here are three lessons that could help all of us cope with the challenges ahead:

Lesson #1: You need to put your oxygen mask on first.

Early on in our NICU stay, one of Lucy’s nurses reminded us of the instructions given by flight attendants on a plane, one we had heard countless times before but to which we had never given much thought.  When necessary, “you need to put your own oxygen mask first before putting a mask on your child.” The lesson was clear: in order to best take care of Lucy, we needed to take care of ourselves.

Putting this lesson into practice, Courtney and I began going out to eat one night each week, to share a nice meal over a bottle of wine and check in with each other.  Did we spend most of the time talking about Lucy and the day’s events at the hospital?  Of course we did, but this time away from the constantly alarming medical equipment and the intensity of the NICU still provided us with a much needed respite.

Our weekly date night became a treasured ritual in the coming months and years.  Though we cannot keep up this tradition due to the ending of sit-down service in restaurants, we have found other ways to reach the same goal during these turbulent times.  We make time to cook nice dinners together, which we typically share by candlelight after Lucy has gone to bed.

Of course, we don’t always get it right.  Being cooped up inside a modest-sized house for weeks on end with a five-year-old has been highly stressful at times.  But we still try our best to maintain that NICU mentality of putting our own oxygen masks on first, making sure to take care of ourselves physically, emotionally, and spiritually.  Even when it is challenging, this lesson is like a North Star we can use to guide us home.

Lesson #2: You can learn to live with uncertainty.

During the first few months of our NICU stay, we just kept thinking Lucy needed to get strong enough and big enough to go home and then we would carry on with the life we imagined as expectant parents.  Then she failed her swallow study and we were told we could no longer feed her by mouth.  It also became clear she would still require oxygen support even after she came home.  We had not pressed the pause button on the typical parenting experience.  We were on a completely different path, and one that had no end in sight.

It is hard to adequately express the emotional depth and pain of this loss to those who have not experienced it.  Seeing parents of typically developing kids could be painful and, even now, still can be.  On the other hand, our experience has also allowed us to tap into hidden reserves of strength.  It has taught us to live with uncertainty, to find joy even amidst suffering, and to live more fully in the present.  In the last few weeks, I have often found myself smiling to Courtney and saying, “It’s the little things, right?”

While we have experienced that same disorienting sense that the entire world has been turned upside down by COVID-19, we never doubted that we could adapt and deal with it.  This is not the first time our lives have been completely disrupted nor the first time we have had to face a future filled with uncertainty.  As Rose Reif, a North Carolina-based therapist, points out, “for special needs parents, this is not the first time that life hasn’t looked how they expected it to look.  This is not the first time that they’ve been told they’re going to have to do something that feels impossible.” (See “Four reasons why special needs parents are better equipped than everyone else to handle Coroniavirus”)

Lesson #3: Resilience is the result of community.

In our individualistic society, we tend to think of resilience as a quality possessed by certain strong, super humans who can overcome long odds. Our experience as parents of a medically complex child has taught us that resilience is not an individual trait, but rather a reflection of community.  Resilient people belong to networks of mutual support and caring.  

From the beginning, we have benefitted from several different communities, most notably First Church in Jamaica Plain, the Unitarian Universalist church with which we have been involved for almost a decade.  At first, we felt awkward accepting help, but we came to appreciate that people truly wanted to help and that we really needed it.  We will never forget all the prepared dinners brought to our house, the volunteers who helped us clean up our back yard when it was completely overrun with fall leaves, and the countless other gestures of support we received.

Even when we were too frightened and overwhelmed to attend church service with Lucy, we stayed connected to the community.  I will never forget the annual Fellowship Dinner we attended during Lucy’s first, challenging winter at home.  Lucy was at home with one of our home care nurses, another critical facet of our support system.  We had not stepped inside the church since Lucy was born, and we had not told anyone we were planning to attend the dinner.  When we walked through the doors of the Parish Hall we were met with excited greetings and loving embraces.  Everyone knew what a rough time we were having and what a big deal it was for us to be there.

During the last three weeks, I have been encouraged by efforts to not only maintain but also to strengthen social ties with friends and neighbors.  Many of us are spending more time checking in with old friends and relatives.  Mutual Aid Networks have quickly been formed to make wellness calls to seniors and deliver groceries to the most vulnerable members of the community.  Activists and public officials are calling for equitable policy responses to COVID-19 that take into account the fact that the working poor are the most adversely impacted by this pandemic.

We are living through a time of great disruption and uncertainty. But this is also an unprecedented opportunity for us to radically rethink the way we have shaped our lives and our society.  Perhaps COVID-19 will finally teach us how much we need one another, how resilient we can be when we strengthen our social ties, and how much happier we are when we are together.  

Roy Karp is an educator, freelance writer, and co-owner of Rozzie Bound, an indie bookstore in Boston, Massachusetts (USA). He is a columnist for the Dorchester Reporter and has a personal writing site called The Unbroken Circle. He also has extensive experience in secondary education as a classroom teacher, curriculum designer, and school leader.