From Inside the NICU: September is National NICU Awareness Month

September is National NICU Awareness Month. Over the next thirty day, I will chronicle the NICU experience, as seen from my perspective. While most NICU parents will be able to relate to a lot of what I describe, every experience is unique. In addition to witnessing our daughter Evelyn’s five-week NICU stay, we watched other families battle their own struggles. We connected with other mothers and fathers whose little ones were not as fortunate as ours. As we were able to hold and comfort our child frequently, we also spent this time helplessly observing what others had to unfairly face: quarantines, unusual–and sometimes deadly–illnesses, and micro preemies who could not even be touched for weeks.

Our experience left me a changed person–hopefully for the better. I have seen things I would not ever wish to see. But, because this experience is part of my life’s fabric, I have grown in my ability to see the world with more clarity, feel empathy more deeply, and appreciate more profoundly. 

Prior to two years ago, I had little knowledge of NICUs. I did not know for what the acronym stood. I did not know what the tiniest of patients looked like, what type of ailments sent them there, and how these babies brought along with them heartache and massive pride all at once. Often mixed up in a messy jumble of emotions, I had never felt how the happiest of moments could scatter about the constant worry, flittering around like crispy autumn leaves escaping in the wind. I could not have imagined a world that brings valleys so deep they touch the core of the earth and peaks so towering they scrape at the clouds.

As the greatest champions of these tiny humans, parents sit dutifully each day (and often night) by their bedside. Often separated by the clear plastic box, meant to maintain a safe controlled environment, it also brings with it a soul-crushing barrier. Being unable to touch your newborn is tough. Being unable to soothe your 3lb preemie who needs you more than anything is excruciating. Yet, we do it. Day after day, we force ourselves back to the very hospital in which the unexpectedly eventful birth took place.

I had never seen a baby hooked up to a feeding tube. The slender orange pipeline wound its way through a nostril barely bigger than a pinhole and down Evelyn’s esophagus. Intended to be held in place by tape, the stickiness often fell apart creating infinite distress about making sure the life-preserving line stayed in place. When Evelyn was more of an established NICU patient, she decided she had had enough. When we returned to the hospital after dinner one evening, the nurse was dutifully working at Evelyn’s bedside, unsuccessfully shoving in a new tube. Blood dripped from Evelyn’s right nostril. Tender blood vessels had been beaten down and broken, leaving a trail of crimson sadness. Even though Evelyn’s cries were softened by the plastic enclosure, nothing prepared my heart for watching the medical staff fight to secure a life-saving device. 

I had never seen a baby regularly stop breathing for terrifying moments at a time. The first time Evelyn’s monitors wildly beeped, I panicked. Having no idea what it meant, I took little comfort in the calm demeanor the nurse portrayed as she sashayed through the curtain wall that separated us from our neighbor: “Oh, that’s nothing. These machines always go off.”

Over the course of the next five weeks, those monitors created more cacophonies than I was able to bear. Each time they beeped their ugliness at us, I came apart. Looking around frantically for the nurse, I debated countless times: do I stay by my daughter who is not breathing or leave her to find a nurse? As we experienced rounds each day–a time when the NICU doctor, nurses, therapists, residents, and whoever else hooks on to the entourage–came around to review each baby’s case, we learned to read the monitors. There are different reasons a baby stops breathing; they are detectable in the patterns on the screen. While we were helpless in so many ways, at least we learned how to understand our daughter through the wavy lines on the screen. It gave us a way to ease our minds when faced with the chaotic machines.

While not all babies in the NICU are premature, a lot of them are. 1 in 10 babies are born too soon, which makes for very full NICUs. At times, ours was at capacity. Heartbreaking as it is, watching our Evelyn persevere was remarkable. The NICU is a place of fear and strength, withering resolve and bravery. It highlights the inner tenacity we carry. It demonstrates just what, as human beings, we are capable of.

Over the past two years, I have connected with others who have walked this path and also with those who just wish to learn. Knowing this pain, grief, and at times ultimate happiness, opens my eyes to humanity. Knowing the NICU is now a part of me, my husband, and many others. There were tragedies, heartaches, deaths, and sicknesses I will never unsee nor unhear. Alternately, there were milestones reached, mini-celebrations between parents in the break room, and  joyous homecomings that I will never forget.

Two years ago, I became wiser, stronger, and more compassionate. Two years ago, I entered a crash course in how profound a mother can feel. Two years ago, I became a mother to a preemie.