Thrown in Deep, Far from the Edge: Emerging as Parents of Micro Preemies

March 25, 2019

parents of micro preemies, hand to hold, life after the nICU, NICU and beyondWhen I was pregnant, I remember reading about classes for new parents-to-be. There were options like Caring for Your Newborn, or Caring for your Newborn Twins, or Breastfeeding 101. I definitely don’t remember any offerings called Caring for your Micro Preemies. Who wants to anticipate needing that?

On Wednesday, May 16, 2012, as strange stomach discomfort turned into consistent pangs, a doctor declared it a “birth day,” and I was whisked away to labor and delivery. This time was for real. Not like the time one water broke or the many other times I had been ferried up while on bed rest to make sure heartbeats were heard, or to check some or another flutter. These were full blown contractions – what everyone had been hoping to stave off. After an emergency vertical c-section, two separate NICU teams descended upon both babies to determine how bad things really were. I was given more pain meds and stitched and stapled up as the hub bub whirled around me. There was a visit from the neonatologist to tell us that our son wasn’t doing as a well as a “typical” 28-weeker. He had already been scanned and an until then undiagnosed case of congenital diaphragmatic hernia pronounced. We were awaiting the arrival of PICU/NICU staff from the children’s hospital down the street to see if he could be stabilized and transferred. We awaited our first sweet win of parenthood – he could be transferred to await surgery! Wait… sweet?

As I lay in recovery, trying to wiggle my toes back to life and wrap my head around what the hell had just happened, it became evident that this ride wasn’t going to be like any other. This in the context of beating my husband’s cancer three times over just a few years prior.

I am one of those people who has always loved babies and kids. I love holding babies and playing with them, and I was, even before having kids, very comfortable changing diapers and giving bottles. But this was a different ball game, a different planet. This was a world of strange, super tiny babies that needed intricate technology to do the most basic of baby things: breathe and eat. And even with strange machinery, they hardly did the most basic of all baby activities: cry.1 I am certain my most common refrain as a new mom was: “I was so comfortable with babies, but I’ve never seen a micro preemie before!” Somehow, these weren’t babies – certainly not the babies I was expecting. To this day, I am shocked by the sheer difference in the look, feel, and weight of full-term infants in my arms.

How would I emerge as a confident caregiver, parent and navigator of this mess? I’d never even dropped in for a glimpse of this world before. No blockbuster movies, no independent documentaries, no books, no essays, no photo spreads had clued me into the true intensity and joy and heartbreak it involved. My only encounter was an academic knowledge gained in graduate school from myriad journal articles describing LBWI (low birthweight infants) or VLBWI (very low birthweight infants).2 The picture wasn’t pretty.

We cried frequently, became steadfast immediately and went step-by-step learning to parent when you’re not the primary or even most trusted caregiver. We negotiated the advice, practices and logistics of two different NICUs. One gave Tylenol after vaccines; the other didn’t. One offered donor breast milk; the other didn’t. We researched, we talked, we asked questions. Nevertheless, very few things were up to us in those early NICU days. They were on an eating, diaper change, medicine and skin-to-skin schedule set by somebody else. It was demoralizing.

Of course, we were grateful for this amazing team of doctors, nurses, social workers and therapists that showed us the logistical ropes of being micro preemie parents, but it was surreal, nonetheless.

Rule #1: Disinfect multiple times before going near your baby. Repeat.
Rule #2: Do not disturb the prolific, carefully organized array of tubes and wires.
Rule #3: Be very, very quiet and make no sudden moves.

We changed diapers the size of index cards; learned to apply touch without sending them into distress; (eventually) dressed and bathed delicate bodies with underdeveloped skin and poor internal temperature regulators; fed kiddos that couldn’t remember to breathe while simultaneously sucking; put them upright in our arms, and eventually testing them in car seats, using endless towels and burp clothes situated just so to prevent them from cutting off their own oxygen supply with a simple nod of the head, too heavy for underdeveloped muscles to reposition on their own.

We eventually broke free, being some of the very lucky ones. One just before due date and the other a few weeks afterward.

Things might have actually been more terrifying at home. Yes, they were home where they should be, but we no longer had all-knowing monitors and expert medical staff to make sure they were all right. It was all us. Alarms set every three hours to feed them. Warming cold bottles of formula in hot water so they burned no unneeded calories to process the milk entering their bodies. Feeding, burping, and changing diapers for one, and then the other, on an endless sleepless repeat cycle.

Even before they came home, we began to negotiate the endless scheduling of and visits with doctors, twice weekly home visiting nurse check-ins and early intervention practitioners. I had been (or so I thought) an organized person, but this necessity of extreme routine and follow-up kicked my methods into a higher gear.

And, in time, we stopped doing every single thing we were asked to do by each individual doctor and therapist. There weren’t enough hours in the day or person power to get it all done. We were the only ones who had the 50,000-foot view and certainly the ones who knew our kiddos best. However, in those early days – and even now – reconciling what you know with what so many specialists are certain of is enough to make you seek respite in a very dark, very quiet and very private closet.

Our former micro preemies are almost seven years old. For us, the constant vigilance and responsibility of tying all the pieces together is still very present. We’re always tired, often frustrated and will forever be seeking the optimal balance of medical, developmental and individual needs. Surprises still constantly surface. Yet, so far, we’ve come out each day as better (or at a minimum, more experienced) negotiators, navigators and parents, if no less frustrated or tired for the wear.