fight for preemies

I am half-way through my revision of Ready for Air, which is both exciting and daunting—exciting because retyping it has forced me to cut unnecessary paragraphs, to put pressure on my prose, and to never let the narrative threads slip too far from sight; daunting, of course, because I still have 150 pages to go, and now that I’ve lost my morning writing time, I’m not sure how I’ll make this happen. (My deadline, which now seems impossible, was December 31st.)

It’s been interesting to retype this story, to dive into a present-tense narrative six years after the fact. I expected the time away from the manuscript to allow me to see it more clearly, which it has. But I also thought I’d be so distant from the material that it wouldn’t affect me. This has not been true. I find myself tearing up suddenly at the coffee shop as I rewrite scene after scene.

It has been six years since I developed severe preeclampsia, six years since Stella was born at 32 weeks, six years since we spent a month in the NICU. But, like most preemie parents, those memories are never far from reach. I have blogged about this before, here and here and here.

But today I want to post an excerpt of Ready for Air for the March of Dimes' Fight for Preemies. November is Prematurity Awareness month and today, November 17, is the MOD Fight for Preemies. Over 400 bloggers are posting about prematurity, posting their stories. You can read them here.

From Ready for Air, the first time I see Stella, who is three days old:

On the counter next to Station 5, there is a can of something that looks like hair mousse. D sprays some into my hands and then his own. Antibacterial foam, he says. It’s sweet, floral, and I realize that this is the source of the sweetness, the scent of the NICU. I watch how he rubs it into the grooves of his knuckles and up his wrists. I do the same, then stare at the monitor, which hangs above Stella’s bed. It flashes numbers and jagged lines: red, blue, yellow, green. Red, blue, yellow, green.

“Kate,” D says. “Look at the baby.” He nods at Stella.

I don’t want to look at her. I don’t want to look at this tiny thing. I don’t want this tiny yellow thing to be my baby.

D’s hand is on my back. He presses it gently.

I look at Stella. The phototherapy light is off and her goggles hang, limp, from her temple. On the other temple is a circle of Velcro. Velcro on her temple. Glue and Velcro on her temple! I look at her eyes, which are closed—yellowish red lids over bulbous eyes—then take inventory: toothpick ribs shudder, wires snake away from her chest.

D cups the top of her head with his palm—dwarfs her head with his hand. “You can touch her,” he says.

I nod and reach for a foot. Wrapped around one foot is a cuff with a red light on it, so I go for the other one. I close my fingers around it, and I can’t get over it, how small it is, impossibly small. How can a foot be this small? And hot. She’s been baking under the light and the heater, which blows hot air down on her, and now her feet are on fire.

I remember the videos from birthing class, how the babies, still covered with the white slime of birth, were pressed to their mothers’ chests. How the babies rested in their mothers’ arms. How the babies nursed, latched on right away. That’s how it’s supposed to happen. But here I am, touching my three-day-old baby for the first time, and nothing is as it should be. I’m covering her foot with my fingers, rubbing her hot ankle with my thumb.

Suddenly she stretches her arms and legs and pushes against me with a force that surprises me.

“I think you’re tickling her,” D says.

I look up at him.

“You’re tickling her.” He nods at her foot, at my hand on her foot.

“Oh.” I lift my hand away, irritated. How does he know I’m tickling her? Maybe he’s tickling her. But as soon as I’m no longer touching her, she’s still again. She settles back onto the fleece blanket. Oh. I was tickling her. He was right. He knows her better than I do. I have a baby too ticklish to touch and I didn’t even know. I feel like crying, but don’t want to cry here. “Take me back,” I say. “I’m ready to go.”

I say nothing on the way back to my room. D keeps asking, are you okay? and over and over again I say fine, because I don’t want to talk about our tiny baby. I don’t know what to say. I wasn’t prepared for how small she would be. I knew she was small. Three pounds is small. But I didn’t understand it, not really, what a three-pound baby hooked to a ventilator looked like. I couldn’t see her mouth. I don’t know what her lips look like. I’m not sure why this seems important, but it does. This is part of my problem, I think, not feeling prepared. But the other thing that’s bothering me is the fact the D does seem prepared. He’s taking this—our tiny baby, the move to the NICU—in stride, as if it’s no big deal. I am failing as a new parent, and he is passing with flying colors.

20 million babies worldwide are born prematurely every year. Half a million of these births occur in the United States. Many of these babies die. Many have disabilities. According to the March of Dimes, 25% of the youngest and smallest babies who graduate from the NICU live with long-term health problems, including cerebral palsy, blindness and other chronic conditions. A study published in the Journal of the American Medical Association in 2002 found that children born prematurely were at greater risk for lower cognitive test scores and for behavioral problems when compared to full-term children. For babies born at less than 500 grams (1 lb, 1 ounce), the mortality rate is 863 deaths per 1000 live births.

There are success stories, of course. Huge advances in technology and medicine have given countless premature babies a chance at life. But still, having a baby born prematurely is devastating. It’s not the way it’s supposed to happen.

What can you do? You can donate to March of Dimes or to a local hospital NICU. You can help spread the word about the dangers of premature birth. You can sign up and write a post about prematurity today.

I volunteer at the hospital where Stella was in the NICU, and tonight our committee will tour the new unit, which has just been completed. And I know that as I walk through the shiny new NICU, I will be thinking of the babies who will soon reside there. In a few short weeks, each of the private rooms will be filled with the beeping and whirring of machines, with the forced breath of a small life, with the heartbreak and hoping of parents. This post is for them.