The littlest blessing

This photo is sweet, peaceful, and beautiful. It is my favorite photo of my son Owen while in the NICU, because he looks like a baby, not a baby bird. He isn’t in pain, or hungry, or lonely. He’s sleeping, like a newborn should.

But the photo is misleading, too. You can’t tell how small he is. You can’t tell how scared we are. You can’t tell how traumatic beginning life as a preemie is for this child, or for his mother.

I always use this photo when I need a “birthday” picture of my son, though he’s actually three or four weeks old here. I use it because it is not alarming or threatening.

But this is how it really was:

That is a newborn sock, and a diaper no more than 2 inches wide. My fingers are indicating that he is four days old.

Owen was born nine weeks early because I developed HELLP syndrome, a rare and deadly disease. Baby must be born or both mother and baby will die. No treatment, no options.

Owen was also extremely small for his gestational age, the cause of which we’ll never really know. At 31 weeks, he should have weighed about 3 1/2 pounds. He tipped the scales at a whopping 1 pound, 13.5 ounces. We spent eight weeks in the NICU, 12 of those days he was on a respirator. He came home on oxygen. He had a hole in his heart, but unlike many preemies, he avoided surgery because a pharmaceutical intervention worked. He was strapped down and his eyelids clamped open for a test of his eyesight. (They made me leave the room for that.) He was all of five weeks old and probably weighed two pounds.

My first child was 12 days old when I first held him. His first 36 hours I spent unconscious; when I finally recovered I could hardly believe, nor accept, that my baby was across the hall in an isolette. I did not immediately rise to the occasion; that took another day or two. I actually referred to myself as pregnant. I didn’t really want to see him. I’m sure it was shock; I had, in fact, nearly died. But still, it remains one of my greatest regrets.

My baby was often hungry. Fed through a tube in his nose, his weight determined how much breast milk he was to be given, usually measured in milliliters. He was fed by a nurse on a schedule. And while he cried for a half hour waiting for the appointed time, I, his mother, could do absolutely nothing.

For 56 days I spent all day in the hospital, from about 8 a.m. to midnight. But I did have to leave to sleep. I used to pray each night that would God please hold my baby when he was alone, when I couldn’t? When we awoke to pump (every three hours, on the dot, for eight weeks), we called in for a report. If my favorite nurse, Anne, was there, I slept. If it was a nurse I didn’t like, I didn’t.

We were desperate to get out of there. While he was comparably well, by NICU standards, he failed to grow much at all. When we left for home, he weighed three pounds, two pounds less than their usual threshold, but we all decided he might grow better at home. Too small for a car seat, we made the two-mile trip with a car bed, nothing more than a washbasin with a five-point harness. (He did grow better at home; once there he gained one ounce per day for the next three months.)

Preemie-sized clothing may be cute, but prematurity is not. It was a eight-week fog of tears, pain, anger, despair, joy (yes, joy), and a depth of fear so great it will never truly leave me. He could be hungry, sad, or lonely, and I could do nothing. He could go blind, or deaf. He could be disabled, or need a feeding tube for life. He could have developmental or mental disabilities. He could die. And I could do nothing.

November is Prematurity Awareness Month and today is World Prematurity Day. There are 15 million preemies born world-wide each year. One in eight American babies is born too soon. And while many — even most, in high-income countries — survive, thanks to decades of work and research by organizations like the March of Dimes, these babies and their families suffer more their first days and weeks than any person should in a lifetime. The emotional and physical toll is enormous.

Today Owen is 11 years old, a sixth grader who plays piano, baritone, and baseball. He takes skiing lessons and is a programmer on his Lego League team. He recently admitted to liking a girl and a few days later, told me to “get out of his life!”  He is, in other words, completely normal and perfect. His outcome is an absolute blessing.

When we were in the hospital I used to see people going about their lives, doing normal things, and wondering how on earth they could go on; didn’t they know the world was ending? Right now as I write this and you read it, there are babies being born before they are ready. There’s a mother crying next to her baby’s hospital bed. There are parents celebrating the birth of a preemie son while mourning the loss of his twin brother. It’s a world I never knew existed until I entered it, and I know now that it continues, every day and every night, everywhere.

The March of Dimes is working to light the White House purple in honor of preemie families on January 3, 2013, the 75th anniversary of its founding. Please sign the petition and spread the word, and show these families that we know, that they are not alone, and that there is hope.

To learn more, read this great article by Carole Presern, director of the Partnership for Maternal, Newborn and Child Health, or visit the March of Dimes website.