Nine Years After the NICU
By Rebecca Hughes Parker
I consider my daughters’ birthday to be in January. But I am the only one.
Their birth certificates read November 17, 2004 and that is the day they were hastily scooped out my womb, neonatologists standing by with oxygen. But, in my head, they did not fully join this world until January 2005, when the tubes and leads were removed from their tiny bodies and they were finally declared ready to breathe and digest on their own. The day they came home—a bitter cold day like the ones we have been having this winter—they were five-and-a-half-pound newborns. They looked and acted like two-day olds, but really it had already been two months.
We are lucky, so lucky. I know that. I know they are fine now. Better than fine. But I’m the one who was toting them around, slowly, inside of me at 29 weeks 5 days of pregnancy when my water broke in the middle of the night. And it didn’t feel so lucky then.
It didn’t feel so lucky when they were put in the more “intensive” part of the intensive care unit, with one nurse just for the two of them. I did not get to hold them when they were born. I was wheeled down hours later to their incubators so I could look at them. Look, but not touch.
It didn’t feel so lucky when I was told how much oxygen they were being given. When I was told that they each had a brain bleed. That one had a hole in her heart she would be given drugs to help close. That they needed caffeine-based drugs every day to stimulate them. That though they were relatively big for their gestational age, they were still far from ready to be born. We will “approximate the placenta” as best we can, they said, but the conditions in the NICU are not as good as the ones in the womb.
It didn’t feel so lucky when I peered at them through my tears and the thick plastic of the incubators. Lost in a web of tape, gauze and wires, their faces were hard to see. Their legs were bent in a frog-like position, common with preemies, I was told. What we could see, throbbing through paper-thin sheaths of downy skin, were their tiny, purple and stubbornly beating hearts. The lights overhead were harsh, the sounds loud. This was not the womb.
It didn’t feel so lucky when I had to pump breast milk eight times a day for babies who could not suck and had to be fed through a tube. Or when one developed an intestinal infection and couldn’t have breast milk at all for weeks. Just “total protein nutrition” and lipids—predigested food through IV lines, IV lines that eventually caused her veins to collapse. They brought in the “IV specialist” nurse. She failed, her attempts punctuated by faint screams from the baby, now at least strong enough for her voice to be heard. The nurse shaved a bit of her hair and put the IV in her head. “It’s a good vein,” the nurse said sadly, “but we know parents don’t like to see an IV in their baby’s head.”
It didn’t feel so lucky when a phone call came late at night, four weeks in. Baby A is on a ventilator, the doctor said. She has two infections at once and her body has shut down. We were at the hospital as early as they would let us come. The head of the infectious diseases department and his interns stood around her incubator, taking notes. The tubes coming out of her nose and mouth were even bigger than they were at the beginning.
The sicker twin recovered slowly the next few weeks, the flood of antibiotics performing its task. The other twin still struggled to breathe on her own. She would go a day or two without an “episode”—when she started to turn blue and needed assistance, the numbers on her vital stats screen would cause the shrill beeping that rang in my head at night. She had to go five days with no episodes before she could be released. Those five days passed breath by breath.
We celebrate their birthday in November, of course. That is the only date that matters to the twins and to our friends and family. It is the date the NYC Department of Education used to determine that they should enter kindergarten at the (unadjusted) tender age of just 4 years 9 months old. The cutoff is December 31. To me, they were not even “here” on December 31. Now, they’re in school with kids who were a year old on that first cold day they left the hospital.
“They are tough,” my husband says whenever I voice concerns. He thinks that the NICU, while an awful experience for us all, had no long-lasting consequences for them. I know I’m being irrational and emotional, given my twins’ perfectly normal development after 18 months old, and the doctors’ shedding of the “adjusted” and “unadjusted” nomenclature at that point, but I’m not sure I’ll ever be fully convinced.
When the twins first came home, they had small dot-like marks all over their heels from the frequent blood tests. Every time I saw those marks I was reminded of the needles that pricked their heels all those days, days they should have been floating serenely in my womb.
As they grew, the marks faded. Recently, one of the twins was reading a book on the couch, her bare feet propped up on the arm. I saw a mark on her foot as I walked by and looked closer. It was a speck of dust. I blew it off. Her nine-year old feet, long and narrow like mine, were flawless once again. It appears that I may be the only one still scarred by the months in the NICU. There are no scars on their feet. Just in my head.
Rebecca Hughes Parker lives in Manhattan with her husband, a stay-at-home dad, and three daughters (including twins). She is the Editor-in-Chief of an online legal publication about anti-corruption issues. Previously, she was a litigator at a large law firm and a broadcast journalist. She writes at rebeccahughesparker.com. Follow her on Twitter or connect with her on Facebook.