What no one tells you about having preemie babies

My entrance into new motherhood brimmed with euphoria as I discovered parenting to be simplistically effortless. My daughter slept through the night and rarely cried. Her big eyes constantly searched for mine and her gurgling laugh filled the quiet house with its charming little ring.

Though born in mid-December, the days were remarkably sunny and warm. Snuggled up by the fire in soft sweaters with delicious coffee and her in my arms, the tranquility of life flowed like sheer happiness through my veins.

That tranquility was fleeting as pregnancy inadvertently embarked upon us a second time while my daughter was yet a newborn. This second pregnancy brought with it, identical twin boys. My body, still not recovered from incubating my daughter, rejected the further strain and my sons entered the world two and a half months before their expected arrival.

Suddenly I had three babies under 12 months old, two of whom were premature.

The twins spent several weeks in the hospital’s NICU fighting the vicious cycle of progress then stagnation. Our lives became fixated on the achievement of the hospital’s milestones for release; the 4.5-pound weight minimum, maintaining core temperature, weaning off the feeding tubes and completing five consecutive days without the need for breathing simulation.

We battled through infection, harrowing weight loss, a blood transfusion, lingering jaundice until at long last, the trauma of NICU life came to conclusion and the hospital sent us unprepared into the dark, cold December night. Or was it day? I can’t remember. With prematurity, there was no day or night.

We couldn’t comprehend at the time that life in the NICU was not the only hard part of prematurity or that those hospital milestones were the last developmental achievements we’d experience for quite a while.

Life at home became measuring milk intake down to the smallest milliliter, checking bowel movements daily for blood, hurriedly suctioning mucus from little noses and mouths when they became asphyxiated and fighting the impossible task of keeping our intrigued daughter away from our immunocompromised sons during a particularly lethal flu season. Our hands cracked and bled from the over-use of hand sanitizer.

The emotional weight of being solely responsible for these two fragile little lives felt crushing. Filled with physical therapy, blood tests, concerns over weight gain or lack thereof, time was a dark blur. There seemed to be no ages, no weeks, no months, just hours upon never-ending hours.

Hours filled with tears as they relentlessly cried. Neither could drink a bottle without choking, and both were in physical pain, screaming as much after eating as they did before. Reflux caused constant vomiting and the diarrhea was so severe that we stocked prescription antibiotic cream for their raw, sensitive butts. They cried from the pain of both.

Never finishing a bottle, they passed over critical calories. Anger consumed me, as those calories were my only sense of forward movement. After a particularly rough feed, I remember taking the unfinished bottle to the trash and just tossing in the whole thing, too frustrated to wash it.

There were times the fear would overwhelm me, and I would sob uncontrollably. The stack of medical bills reached over 8 inches high on the counter, each one another search for answers and another non-descript result.

Our loving pediatrician sent us to a feeding specialist, who sent us to a gastrointestinal doctor, who recommended a home health therapist, who suggested their problems could be neurological.

Meanwhile, days passed, and I’m sure the boys got older, but I can’t say I noticed.

At night, I would lay in bed between rounds of endless caretaking and wonder if my sons would ever progress, would ever be normal. Was there some form of underlying neurological disorder waiting in the darkness to negate hope for improvement? And despite understanding their circumstances, I harbored a massive amount of guilt when each day passed, and their development continued to stagnate—layered with a secret shame at my anger and frustration with the incessant wailing from two sets of tiny lungs.

In this manner, hours faded into days and then into weeks—months passed in this sort of dense, dark fog, where my only life was trying to advance their lives.

Then somewhere standing on the other side of their first year, I raised my head and realized I could see, the fog had suddenly lifted. Sometime between their inability to roll and stammering sound of my son saying “baby” in response to a flashcard—they had grown.

I had grown.

We had grown.

The changes happened at such a slow pace I hadn’t notice. Their stumbling little walks, their babbling of my name, none of it struck me until I held up that flashcard, just as I had every day for months, only that day my son looked at the picture of the baby and said “baby.”

Hearing “mama” was never as beautiful as hearing that one little word. That word that told me we had survived, like coming out of a bunker after a storm and seeing clear skies.

Prematurity lingers beyond the NICU, beyond the texts from friends, beyond the supportive casserole deliveries. Prematurity takes away the life you had and leaves you changed—stronger, braver and ever so grateful.

You might also like:

• 15 thoughts a NICU mom has that she can’t always tell you
• 5 ways to get your premature baby to sleep better, according to a sleep coach
• I learned about exclusively pumping after my preemie was born