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Wednesday, November 17, 2010

fight for preemies

November is Prematurity Awareness Month and today, November 17, is the March of Dimes’ Fight for Preemies. Over 300 bloggers are writing their preemie stories today. You can read them here.

In honor of the Fight for Preemies, I am posting another short excerpt from Ready for Air. This section comes just after I have seen Stella for the first time. D has wheeled me through the long tunnel back to my hospital room, and we’ve decided to use BabyLink, a system that allows you to watch your baby on the television from your hospital bed.



D calls the NICU and then turns on the television. For a moment there is only static, but then Stella appears. At least I think it’s Stella, but how can I be sure? It’s a baby, naked except for a miniature diaper and goggles over her eyes. Her skin is mottled—yellow, red, purple. She writhes on white blankets, thrashes back and forth, pulling at the tape on her mouth, like a wounded animal in a trap.

D climbs onto the bed next to me and pulls me to his side, but I’m still cold. He draws a blanket over our shoulders and we sit there, legs dangling over the edge of the bed, transfixed by the small creature that has been transported through wires and satellite signals into the square of our television. It’s as if we’re hovering above her, floating through the warm air of the NICU.

No sound comes from the television. That’s not part of the deal. But we wouldn’t be able to hear our daughter anyway; the ventilator has reached its slender arm down her throat and fitted itself snuggly between her vocal cords, so she cannot scream or cry.

D and I lean closer together. “Oh no,” he says, and presses his face into my shoulder. And for a moment, I’m reassured by his distress. This is hard for him. I’m not the only one.

Stella arches back, struggling. She can’t see because of the goggles, but even if she could see, she wouldn’t know that we’re here, watching her. She wouldn’t know that she’s not alone. And I wonder whether she will remember this. Somewhere deep in the folds of her brain, etched into her neuromuscular reflexes, will she remember this? If she survives, will she remember thrashing under the lights in the NICU, alone?

Dr. Anderson said Stella was better off out here, but how can that be? How can my daughter be better off on a warming bed, baking under phototherapy lights, a ventilator tube taped to her mouth? How can she be better off beamed through a television rather than inside me?

You can only watch your baby for twenty minutes at a time. I don’t know why, but those are the rules. But after a few minutes, I’ve had enough. I don’t want to see our daughter, not like this. “Turn it off,” I say. “Turn it off.”

I still—not often, but occasionally—wonder whether this or that thing that Stella does is a preemie thing or just a Stella thing. I watch her and wonder if somewhere, deep in the folds of her brain, that month in the NICU exists for her as an absence.

I know I’m not alone. One in eight babies is born prematurely in the United States. Some of these babies die. Some survive with disabilities, varying in degree from mild to severe. Some preemies end up doing just fine. Regardless, every year hundreds of thousands of parents across the globe hover over their tiny babies, wondering what the outcome will be. They hope and pray and fall apart. They grow numb to the beeping of alarms. This is no way to start life and no way to enter into parenthood.

What can you do?

Donate to March of Dimes. Donate to a hospital NICU in your community. Volunteer. Raise awareness. Write a blog post.

This is dedicated to all the preemie parents I know. For their bravery and their love.

10 comments:

LutherLiz said...

I wonder too if Edward has a NICU experience deep in the folds of his brain. What does he know or recall of his time there. Thank you for writing today. I wrote too.

Ines said...

Dear Kate,
Thank you. Your words are so powerful. I listened this morning, on my way to work, the podcast of your reading at Mother Words, recorded earlier this year. It reminds me to remember what prematurity means to parents and families. This is very real for me for two reasons: my son was in the NICU for a few days after birth (he was 37 weeks gestation) and my participation in neonatology clinic, every Monday afternoon, and neonatology discharge planning, every Thursday morning. I feel your book and Vicki Forman's tell a story we, caregivers and mothers, should not forget.

From the podcast I also enjoyed tremendously Nanci Olesen's performance and the reading by Hope Edelman (I have not finished listening to Bonnie's reading). Thank you, Kate for all you do.

Elizabeth said...

Your words are so powerful -- even to those of us who have not shared the preemie experience. They are a testament as well to motherhood -- thank you for your advocacy for this worthy cause!

MoDBev said...

Beautifully written. Powerful and poignant. Thank you so much for participating in the Fight for Preemies.

Susan Bearman said...

Hi, Kate. Thanks so much for this post in honor of National Prematurity Day and also for leaving a comment at Mike&Ollie: 24-weekers Who Beat the Odds. It's been an exciting day as my twins celebrate their 19th birthday right along with National Prematurity Awareness Day.

Am also now following you on Twitter and have added you to my Mother Writers list. Are you on SheWrites?

You can follow me @2KoP

Sarah said...

Beautiful, powerful post, Kate! Thank you!

6512 and growing said...

Kate, I so look forward to reading your book. That excerpt made my heart clench up because I've been there.
I often think we're pretty much done with the whole preemie thing, or the worst of it, and then a pneumonia so terrifying settles in Col's lungs, or I find myself opening public doors with the sleeve of my shirt as I was taught to do in the NICU days.
If you don't mind, here is what I wrote last year for Prematurity awareness:
http://6512andgrowing.wordpress.com/2009/11/17/youve-come-a-long-way-baby/

Amber said...

Stunning images, Kate. I'm so looking forward to reading your book, though I better remember to have a box of tissues nearby.

unfinishedportraitofsam said...

Guess I echo everyone else--this is gorgeous, Kate. Thanks so much for sharing.

kate hopper said...

Thank you all!