She weighed 1 pound 4 ounces. That’s the size of a 6-week-old kitten or an adult Eastern gray squirrel. It’s the amount of breast milk an eight-pound newborn drinks in a day. It’s $1.26 in pennies.
She spent 196 days — 6 ½ months — in the neonatal intensive care unit at All Children’s Hospital in St. Petersburg, Fla. Now she is 5, a ferocious, joyful kindergartner, master tree-climber, “mommy” to her pet chicken, Sesame. She asked me to tell you that she loves her life. She also wants you to know that she voted for Hermione for president.
People ask me, what do you wish you had known?
So many things.
There is hope in the statistics
I was cramping and bleeding, inverted in the bed when a neonatologist visited my husband and me to explain the odds. I had never seen a neonatologist, even on TV.
He patiently led us through a dizzying string of acronyms: IVH, PVH, NEC, ROP, CLD, RDS. A head-to-toe litany of potential disability. Our daughter could be damaged to any degree in any corner of her body or mind.
She was so early no doctor would insist on intervening to save her. They could try, but we had to decide whether that was really what we wanted.
He delivered the numbers: Eighty percent chance of death or moderate to severe disability. He said more, but when he left, that was all I remembered: Eighty percent.
I saw a pistol with five chambers, four bullets. Russian roulette for my daughter’s life. Would I gamble on 20 percent?
I know now that no number tells the whole story. The scariest numbers are on Google, where terrified parents trip into thickets of outdated statistics and studies from other countries, where the traditions of intervention may be different and the odds are not as good.
The number I needed to know was not the percent chance she would die or be disabled. Because if we chose not to intervene, the odds she would die were 100 percent. The number we needed to know was is if she lived, what were the odds she would be perfectly fine? That number was closer to 50 percent.
If I had to make the choice again, it would be an easier one.
It’s a process
It felt like a coin flip: save her or let her go? But that’s not how it works. In reality, doctors and nurses learn so much in the first hours and days of a micro preemie’s life, particularly about the condition of the baby’s brain. In that window of time, there are opportunities to turn back and withdraw life support. Most babies who die will do so in the first few days. Giving a baby a chance at life doesn’t have to mean subjecting her to a life she wouldn’t want. And in that first week, something magical can happen.
It will change you, and that’s good
When Juniper came into the world, two people were born. I left behind the person I used to be and the things I used to care about. I emerged with a whole new understanding of what life was for, what I stood for, what it meant to be her mom.
Doctors and parents debate quality of life. Whatever that concept means to you, it will change. It changes the day you meet your baby. It changes as you meet other families who are dealing with more than you. It changes when you spend long hours in a dark room, thinking about the things that matter and the things that just don’t.
I’d do anything to spare my daughter her traumatic six months in the NICU. But for myself? I wouldn’t change a day.
I never want to un-see my husband falling asleep on the lid of the incubator. Or my daughter opening her eyes and looking at me for the first time. Or my own hands, raw from too many scrubbings in a hot hospital sink, hovering over my baby’s tiny back. I never want to forget the tenacity at my one-pound daughter’s core. I never want to lose the humility of seeing other parents, staggering blearily to other floors to hold the hands of older children through another long night.
You are a parent
It’s easy to believe there’s nothing you can do to parent a baby in a box. You sit beside the incubator, at first, and if you have the strength or awareness, you cry.
But then a nurse tells you to reach in and touch her. It’s the scariest thing you’ve ever done. She looks alien, but familiar, too. She looks surprisingly, shockingly alive. When you put your pinkie in her tiny palm, she seizes it with a will that humbles you, breaks you, remakes you, right there.
The nurse tells you to change a diaper. The diaper is the size of a box of Tic Tacs. You lift these perfect little red feet and discover your baby has no butt, just a couple of wrinkles where a butt ought to be. “Front to back,” the nurse says. “That’s all you need to know.”
Your baby survives the diaper change, and you do, too.
Eventually, you hold her. It takes 45 minutes to move her the 3 feet to your chest, but once she’s there, she breathes better, holds her temperature better. You can see it on the monitor. She knows you. She needs you.
When you read to her, she can tell you, by the numbers and waves on her monitor, not to use the scary voice for the paragraphs about Voldemort. She can tell you which songs she wants you to sing. She can tell you, emphatically, to play “Waitin’ On A Sunny Day” one more time.
The studies — the ones you find only after you’ve been in the hospital a while — confirm what you’re starting to discover on your own. The most important factor in how a micro preemie turns out is an involved parent.
But you suspected that, because you are talking now, you and her. Being her mom is not something you might get to do someday. You’re doing it now.
Look at the baby
About a month in, we got the phone call at 3 a.m. “How far away do you live?”
Our baby was dying. Our doctor, Fauzia Shakeel, had to decide whether to send her to surgery. The surgeon didn’t want to operate, because she said the operation would kill our daughter. Surgeons have a saying: “Never operate on a patient on their last day.”
Dr. Shakeel had a saying, too: “Look at the baby.”
She reminded herself and her colleagues that the answers are not always in the monitors. That the technology is not a substitute for human instinct.
So Dr. Shakeel looked at our daughter, who had just opened her eyes for the first time. She saw a little girl, wide-eyed, on her last day, perhaps, but struggling to connect with the world. She ordered the surgery.
“Where there’s life,” she told us, “there’s hope.”
I saw that it would take a great deal more than machines to save my child. It would take people like Dr. Shakeel. Every time Juniper was yanked back from the edge of death, it was a human being paying attention, and not a gadget, that made the difference.
People see my daughter now, and they say, “She’s a miracle.”
Yes, I say. She is.
But the miracle has a million facets. The nurse who saw something a monitor missed. The doctor who looked into your baby’s eyes and then prayed. The boss who dropped by every morning with a large cup of coffee, whether you asked for it or not.
My friend Stephen told me I was overthinking it. “Love is the miracle,” he said. “The miracle is that we love each other. That’s it.”
Our doctors and nurses didn’t just treat our baby. They loved her. They made us feel safe enough that we could love her, too.
It’s worth it.
It will feel terrifying, but it won’t feel terrifying every moment. It will also feel sacred, and mesmerizing, and funny, and boring, and transformative. For however long it lasts, whether for an hour or a day, that time with your baby will be the some of the most magical time you ever spend. You’ll carry those moments inside you. They will be the most precious moments of your life.
Kelley Benham French is the author, with her husband, of Juniper: The Girl Who Was Born Too Soon, published by Little, Brown. She was a 2013 Pulitzer Prize finalist for “Never Let Go,” a newspaper series about her micro preemie daughter’s survival. She is a professor of practice in journalism at Indiana University. Follow her on Twitter @KelleyBFrench.
You might also be interested in: