The New Normal
Someone has tried to brighten up the room with paper cutouts of watermelons and beach balls. But decorations cannot compete with medical monitors or pods of plexiglass isolettes and tiny metal cribs. I spy my baby, born not two hours ago, the newest resident of the Neonatal Intensive Care Unit, Nursery Five.
A nurse beckons me over and I squint to see beyond the wires and tubes to my son. A Gerber baby he’s not. Long and scrawny, he weighs two pounds, nine ounces. My shoes weigh more. His fingernails are smaller than Chiclets, his face gaunt and wizened, and he is the red-purple color of a sugar beet. At twenty-seven weeks gestation, the baby is breathing from a respirator, his lungs too young to function. I open an isolette porthole and stroke his leg with my finger, hoping I don’t break him.
The nursery houses six infants. Four of them are five or six pounds, baby giants, but one is even tinier than my son. I’m proud, however inappropriately, not to have the smallest infant in the nursery. On day two, the baby basks under neon blue lights. He wears a mask to protect his eyes, an alien elfin superhero. The following day, the baby grasps my husband’s fingers, one in each of his little hands. He has a strong grip.
A week passes and routine gains a hold over chaos. We rise at seven and leave for the hospital. My husband works there and will visit throughout the day, but the NICU is my new nine-to-five. I whisper good morning to the baby, and listen to the nurse reciting the night’s events. I watch him sleep as his monitor stands a silent guard.
I am sent to the waiting room when the doctors round to discuss the babies in the nursery. The chairs are ugly red vinyl, but oversized and comfortable. In the afternoons I sometimes nap in them. I often see parents sleeping in the chairs, giving in to exhaustion and boredom. Families don’t intermingle in the waiting room; the fear of comparing stories and coming up short is greater than any potential comfort.
The baby is opening his eyes now. They are disproportionately large in his tiny head. The attending physician grants permission for me to begin “kangaroo care,” where the baby and I will snuggle bare-chested. The nurse sets up a privacy screen; she presents the baby to me and I lay him against my chest. The nurse positions his head so that his breathing apparatus stays connected and places a blanket over us. He is so tiny. I am afraid of dropping him, of crushing him like a bug. My arm goes numb before fifteen minutes have passed, sending off waves of shocks and tingles. The baby nestles in and falls fast asleep.
I rely on the baby’s monitor as an oracle. Standing above his isolette, it shows his heart rate, respiratory rate and blood oxygenation levels. If they drop below a certain number, an alarm sounds. The first time it happens, I look at the monitor; the baby’s heart rate has dropped from 140 to 70. His nurse, who is with another baby, glances up, returns to her work. The alarm continues to go off. She walks over, opens the isolette door, and taps his foot. That’s it. His heart rate jumps back to 100, then 150. The nurse records how much stimulation it takes to bring him back. Right now he needs only light stimulation.
The respirator has been replaced by something called CPAP – continuous positive airway pressure. CPAP exerts a certain amount of force as the baby breathes, “nagging” him to keep breathing. The baby turns his head to wiggle out of the nasal prongs. It must be like having a wind tunnel up your nose. I like that he is solving problems already.
The baby is not tolerating the feeds that he is getting through the feeding tube. His belly is distended, a post-Thanksgiving dinner bloat, and the doctor orders tests to rule out infection. There is a constant see-saw of good and bad days, of turbulence and calm.
Now the baby is not tolerating the CPAP. As the second week ends, he has more episodes where he stops breathing, and it is getting progressively harder for the nurses to snap him out of it. The doctors decide to put him back on the ventilator.
The baby is one month old on my birthday. He now weighs three pounds two ounces. He does well on the ventilator and after a week is put back on CPAP. But now he is having trouble maintaining his body temperature. The doctors order more tests – an EEG; bloodwork; a rectal biopsy. He poops on the pediatric surgeon during the biopsy. The labs come back normal, but his body temperature remains unstable and his belly stays distended.
One afternoon I enter to find the baby screaming inconsolably. His belly is hard, unyielding, and stays that way after he has finally dropped off into an exhausted sleep. The doctor is paged. She orders a chest x-ray, which shows air bubbles in his intestine and liver, an infection that has led to a bowel perforation.
In the waiting room, the physician on call explains in a thick Asian accent that part of the baby’s intestine is dead and gangrenous, a condition called necrotizing enterocolitis. It sounds awful. It is awful. The baby will need immediate surgery to repair his bowel, and even then, the infection could kill him. We can barely understand the doctor’s accent, but what I hear is her saying that babies can die from this. My baby could be dead by tomorrow. My husband sits beside me, tears streaking unnoticed down his face. I have never seen him cry in public.
In the nursery, they have re-intubated the baby, now pale as the floor’s linoleum. His blood pressure is beyond low. No one seems to know if he’ll survive the move from the nursery to the operating room. But he cannot survive otherwise. The surgeon comes over and puts his arm around my shoulder and tells us that we can kiss the baby before he goes to surgery. So we do, tears falling on his face.
The waiting begins. We talk trivia, processing nothing. Truly, I don’t know how we manage this feat for hours until the surgeon finally comes in and tells us the surgery was a success. Our baby is alive, although he still has to survive the infection. We move into a sleeping room next to the NICU. During the day, I sit vigil and sing to the baby, folk songs and lullabies. He is puffy, like he has swallowed a bag of marshmallows. On the fourth day after surgery, he tries to open his eyes, but can only raise his eyebrows, as if asking “What the hell happened to me?” I tell him that if he beats the infection, I’ll buy him a car.
One week following surgery I can hold him. The baby seems pleased. He stares at me for fifteen minutes and drifts off. Progress comes much faster now, and the baby graduates to the step-down unit to continue his recovery. While this is good news, I am loath to give up the security the NICU has provided. Clouds decorate the ceiling in his new room and I have my own couch to sleep on. No more red chairs. I change his diaper, feed and bathe him, all the normal mom duties.
When he is discharged six weeks later, it strikes me that all the time I was wishing for normal, this baby had welcomed each day as just that. A mom’s voice, a dad’s finger, a warm chest were his only requirements. And this is how a baby who can’t even hold up his head teaches me to make my own normal – a parenting life lesson that I, the most remedial of students, must re-learn every day.
- Toddie Downs lives outside Seattle, Washington. Her work has received recognition from Ohio Writers and Pacific Northwest Writers Associations and her essays have been published in The Plain Dealer Sunday Magazine. Her son, the subject of this essay, is now a thriving 7-year-old.
