Stories From the NICUSarah Netter
The bright lights, the incessant beeping of machines punctuated by wailing alarms, the rhythmic rasp of a ventilator — this is the neonatal intensive-care unit.
The walls and aisles are crowded end-to-end with plastic incubators holding the most fragile of human life. Amid the hustle and bustle of machines, nurses, therapists, and doctors are cries so small and weak they are barely audible — more like a squawk.
It is where a parent’s worst fear and greatest love can be found all in the same place.
One in 10 babies in the U.S. is born prematurely — before 37 weeks gestation. Medical science has led to more advanced, lifesaving care for babies who would not otherwise survive outside the womb, but it’s a delicate dance to care for these tiny infants, some weighing as little as 1 lb.
My own son was born at 29 weeks, weighing 2lbs, 8oz. He spent 73 days in the NICU, going home two days before his original due date. He learned to suck, eat, and breathe on his own in an incubator. For the first month, all I could do for him was sit with my scrubbed arms inside two portals, cupping his tush and his head with my hands. I sat very still, my arms aching, afraid the slightest jostle could send his respiratory rate into dangerous territory.
The highlight of my day was getting to assist in changing his evening diaper, navigating a tangle of tubes and wires, and maybe a quick sponging off. If I was lucky, I’d get to gently lift him off his blankets so the nurses could quickly slide fresh linens underneath him.
I cradled him for the first time just shy of his one-month birthday and the overpowering rush of love and protection was like a drug.
We now join the growing ranks of preemie families who are opening the door to life in the NICU.
Dani, 23 weeks and 6 days
Shaheen Pasha’s son Dani was born at 23 weeks and 6 days, a frighteningly early arrival that most premature babies do not survive. Dani just turned one year.
“The first time I saw my son, I was stunned speechless. Doctors had warned me that his chances for survival were slim and if he did make it he would likely face countless developmental and physical challenges. But no one prepared me for what he would look like. Bathed in garish blue bili lights that turned his translucent red skin purple, Dani was barely visible in his nest of foam.
His body was perfectly developed but painfully thin, weighing just 1lb , 3 oz. I couldn’t imagine holding such a fragile little person without hurting him.
One week later, as I stood by his covered isolette placing one tentative finger on his chest, his nurse asked if I’d like to hold him. Three nurses worked together to place him on my chest without dislodging his tubes. I held my son Dani for the first time, too emotional for words. Dani nestled his little body against me and instantly fell asleep while his monitors quieted, showing no signs of distress. ‘He’s a fighter that knows his mama,’ his nurse said, smiling.
With every smile and every milestone achieved, I am so grateful to be this little warrior’s mom.”
Theo, 27 weeks
Danielle Dreger-Babbitt’s son Theo was born at 27 weeks. She didn’t get to see him for 12 hours after his was born, and when she did, he was covered in wires. Theo now tips the scales at 16 pounds and just celebrated his first birthday.
“It was 36 hours before I was allowed to hold him. It took two NICU nurses and a respiratory therapist to lift my 1lb, 13oz baby from his temperature-controlled isolette and nestle him under my shirt and between my breasts. I was too scared of hurting him do anything but sit completely still for an hour while he listened to my heartbeat.
It was all I could do for my baby. Reflux and chronic lung disease due to complications from a PDA ligation, a collapsed lung, superbug and pneumonia kept him in the hospital and on oxygen support until he was nearly seven-months-old.”
Skye and Oliver, 28 weeks
Seyi Mclelland’s twins were born at 28 weeks. Skye weighed 2lbs, 2 oz, her brother Oliver, just 1lb, 5oz. She went into delivery being told that Skye would probably not survive and that they were trying to save Oliver. Oliver spent 6 months in the NICU, Skye 7.5 months. They are now 2 years old.
“You can see it as depressing and harsh. But I saw it as a place of incredible hope. Despite my children being in incubators, I was still able to be mom. I still cradled their fragile bodies, despite all the tubing. I still changed their tiny diapers, I held their fragile fingers. I sang to them. I read to them. I did everything a mother would do — I just did it in the NICU. They were my babies and I needed them to feel that I was there for them, willing them to fight all the way.
In one day, you can go through all the emotions: fear, anger, happiness. You learn to take one day at a time – first it’s hour by hour, then day by day, then week by week. But you draw on strength you never knew you had. You experience emotions you never knew were in you.
There are still challenges ahead. But at least my worries now are radically different. I am not worried about them living. I now obsess over diaper rashes and are they gaining weight. I guess I now worry about things that other mothers worry about!”
Baby Girl, 34 weeks
Shannon’s daughter was delivered via C-section at 34 weeks. While she initially came into the world yelling, Shannon’s daughter later developed breathing problems and was put on a CPAP machine.
“My husband and I saw her face only briefly before she was taken to the NICU, yet we immediately realized that our top name was the wrong name. In the quiet of the hospital room, we returned to our long list, but it was more difficult to know what fit while our newborn’s face was obscured by a mask. I felt especially disconnected from my preemie those first few days, when seeing her entailed a slow, painful walk from my own room and holding her required a time-consuming untangling of wires.
My scar and the breast pump in my room proved I was a mother, yet I had little opportunity to do any mothering. On her third day of life, my husband and I both woke up thinking about the same name, but we didn’t want to make a final decision until we saw our girl’s face. Happily, the NICU team had removed her mask that same morning, and during our first visit of the day, the question was settled.
During a time when I was forced to let others care for her, naming her finally helped me claim her as mine.”
James and Langston, 25 weeks
Tyrese Coleman’s twin sons, James and Langston, were born at 25 weeks. For all the pain and fear associated with their 3 ½ months in the NICU, Coleman left feeling lucky that not only was her family intact, but that she had been given the gift of practice – learning how to care for her two fragile babies under the watchful eyes of the nurses and doctors. James and Langston are now 2 ½ years old.
“From the first day, my husband and I were taught how to care for our children. The NICU nurses told us how to touch them so that we didn’t harm their delicate, sticky, translucent skin. We were taught how to feed them, hold them upright, support their head and neck, and that many parents hold their babies incorrectly — reclined too far back in the crook of their arms, causing reflux. The nurse said, ‘would you want to eat lying down?’ and it made perfect sense.
We were required to take infant and child CPR classes before taking them home, something the parents of a baby born on-time are not required to do before leaving the hospital. We learned how to swaddle, how to change teeny-tiny diapers inside a plastic box, how to bathe them, how to use their heart rate and oxygen monitors, and even how to suction their noses.
We learned which cry meant what and the importance of washing our hands before touching them. We learned about our children, their little personalities that I felt developing even when they were inside of me, despite how brief that time was.”