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.

seven

The weekend was a blur. I spent Saturday at the first Minnesota Blogger Conference, which was a tremendous success thanks to the countless hours that went into planning and executing the event. (A huge thanks to Missy Berggren of The Marketing Mama and Arik Hansen of Communications Conversations for all their work.)

And yesterday, we had two birthday parties for Stella—a kid and a family party. She was buzzing around all day, unwrapping presents, giggling with her friends, unwrapping more presents, eating cake. (And of course talking to Nibbles, who has recovered nicely from The Incident. Thanks for all your well wishes.)

This morning, my alarm went off at 6:15. I quickly turned it off so I wouldn’t wake Zoë, who was in our bed because she wet her crib in the middle of the night (which happens at least four times a week because she refuses to wear diapers at night. “I’m not a baby!” she says adamantly when I try to convince her of the merits of diapers at night.)

I snuck out of the room and I slipped into Stella’s room, where she was sprawled across her bed, sound asleep. I sat down on the edge of her bed, and just stared at her, marveling at the fact that she’s seven, a first grader. I brushed the hair from her face and whispered, “Happy birthday, sweetie.”

Her eyes opened a little. “I’m so tired,” she said, stretching her arm.

“I know, honey.” I was tired, too, and I wanted nothing more than to climb into her bed and fall back asleep with my birthday girl. I kissed her temple and wrapped her into my arms.

And as happens every year on Stella’s birthday, I’m pulled back in time, to the day she was born. I go back to the magnesium sulfate, the vomiting, the suffocating heat in my veins. I go back to my supersonic hearing, the twisted sheets, the tests, the tests. I go back to the fear, the not-knowing, the eventual C-section. I go back to my three-pound daughter being whisked away as soon as she’s pulled from me.

The events of my preeclampsia and Stella’s birth follow me around all day in such clear detail that it feels as if I could step back in time, as if I could leap into a parallel universe in which all of those events are still happening.

But then Stella reaches her arms around my neck and says, “I love you, Mama.” And I’m back where I belong, with my seven-year-old clinging to sleep in the early morning on her birthday.

I love you, too, Stella. Happy Birthday, big girl!

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.

this lovely life

Oh, what to say? How to begin? Vicki Forman’s memoir, This Lovely Life, is so close to my heart.

When I initially started reading Vicki’s blog, Speak Softly, I didn’t realize that Evan had been born prematurely. I was caught up in Vicki’s lovely writing and in her voice as an advocate for children with special needs. It wasn’t until I read her archives and her column at Literary Mama that I realized Evan was a surviving twin and had been born at 23-weeks.

23-weeks is on the cusp of viability. If you are not a preemie parent, you may gasp and shake your head, but it is difficult to imagine what this means. If you are a preemie parent or have spent time in a NICU, 23-weeks means something else: it means either death or months in the hospital—months of good days followed by devastating days. It means brain bleeds, retinopathy of prematurity, severely underdeveloped lungs.

The Lovely Life is one of the best motherhood memoirs I have read. It details the first years of Evan’s life, the ups and downs that Vicki and her husband, Cliff, lived through after the twins’ birth: Ellie’s death after four days and Evan’s intensely long and heartbreaking stay in two hospitals. It’s the story of how Vicki overcomes her grief and learns to love her son. It’s a story about a different side of motherhood, a story of how one woman learns to become a different kind of mother.

For preemie parents, this book is a must-read. My story is so different from Vicki’s. Stella was born at 32-weeks, and didn’t face the intense challenges that Evan and Ellie faced. But still, I have marked dozens of pages in The Lovely Life where I nodded my head in agreement, where I saw my own experiences and thoughts reflected on the page.

One of the things I respect so much about this book is the fact that Vicki does not sugarcoat anything. Vicki lays bear her emotions and is not afraid to let the messy stuff—the raw grief and sharp anger—onto the page.

Brett Lott has a wonderful essay called “Toward a Definition of Creative Nonfiction” in The Fourth Genre: Contemporary Writers of/on Creative Nonfiction. (You can read a condensed version of his essay here.) In it, Lott says that to write successful creative nonfiction, you must: “be ruthlessly honest about how you see yourself in relation to others” and you “can’t be self-righteous or self-serving.”

Vicki is both ruthlessly honest and not at all self-serving. The ethical questions of how early is too early, and what kind of life is a life are in the book, in the details of Vicki’s story, but it’s clear that she is not writing with an agenda in mind.

Vicki graciously agreed to an e-mail interview, so I'm honored to have her here at Mother Words today:

Kate: Can you tell me a little about how you began writing the book?

Vicki: The book started as a series of journal entries I began a few weeks after the twins were born. I didn’t know at that point that I had a book, or that I would write a book about this experience, but I suspected I might and I knew that if I did, I would want to have a record of specific details from that time--things like what doctors said, or what I said in return.

I continued to keep that journal as Evan’s hospital course became increasingly complicated. In the end, the journal was about nineteen single-spaced pages that constituted the original backbone of the book. Some of those entries worked their way into the book. The rest became notes that helped me construct the narrative.

My first attempts to craft a story beyond those notes became the essay, “Coming to Samsara.” That piece was published in the Santa Monica Review and then reprinted in Suzanne Kamata’s anthology, Love You to Pieces: Creative Writers on Raising a Child With Special Needs. I’m a big believer in getting smaller sections of a longer work into print whenever possible: it allows a writer to keep going with the project, while also permitting pieces of the work to leave the house. That’s good for the writer, and good for the writing.


Kate: Your present “now” self is always close to the surface in This Lovely Life. You reference events and challenges that arise in the future and reflect on your emotional state at the time with your “now” sensibilities. I’m curious about whether this style arose organically for you or whether you made a conscious effort to craft this perspective into the story.

Vicki: The first drafts of the story were a straightforward, chronological telling. As I began to revise, I saw that I would need what you refer to as the “later” voice--one that I called my “reflective” voice—as a strategy for commenting on the events. It felt important to me to give the reader a sense that amidst all the hard news and setbacks we encountered, we had found a way to mend and heal as a family. I could only offer up that perspective by flashing forward with voice and point of voice, into that “later” person you so rightfully notice.


Kate: Your honesty is really breathtaking and so very brave. Was it difficult to get to a place where you could be this honest on the page?

Vicki: I’m laughing at the question, because in fact I had a sort of the opposite difficulty: I knew the material was tough and my feelings were quite honest, so I focused on making the tough stuff more bearable. I worked a lot on voice and narrative distance so that even if the facts and details were honest, the reader had something of a filter, via the narrator, for that honesty.

Above all, I knew that I did not want to elicit pity, because I’ve come to see that often explicit honesty can generate pity within the reader. So I tried to tell it like it was, but in a way where readers might recognize examples of honest feelings within themselves, but also understand that honesty can be processed, or incorporated, and amid the honesty life and perspective and good humor do go on.


Kate: What was the most challenging part of writing This Lovely Life?

Vicki: I had a rare kind of grace accompanying me during the writing, in which I felt very connected to the material, the goals of the book, its urgency and purpose. That sense of purpose and urgency carried me along so effectively that my typical writer doldrums (self-doubt, confusion, procrastination) were mostly pretty far away. I don’t know why the writing came to me the way it did, but I’m eternally grateful.

My biggest challenges came not in writing the book, oddly, but in selling it. When the book was done, I thought I had done a decent job. There was a narrative arc, and a cohesion, and the writing was more or less something I could feel proud about. Then my agent was unable to sell it.

We received the most heartbreaking rejections, with editors reporting that they loved the writing but had no idea how to market the book or find its audience. After a dozen or so of these, I withdrew the book from submission and told my agent I wanted to figure things out on my own. I had to regroup in a pretty fundamental way. The first decision I made was to submit to the Bread Loaf Writers’ Conference Bakeless Prize. While I waited to hear, I began to proceed with other options, like small presses. Before I had to figure out my next steps, the book won the prize.

But not being able to sell the book shook my confidence in a way that had not happened in the actual writing, so that was an interesting twist for me, and reminded me too that writers have to be made of steel from start to finish. The job doesn’t end when the writing ends.

Kate: What would you tell other writers about this process?

Vicki: My path to publication was certainly not orthodox, nor would I recommend it, but for me, thankfully, it worked, presenting a once in a lifetime event that I don’t expect to repeat itself. Next time around, I’ll have to figure out how to convince an editor. That’s the way most writers do it, right?


Kate: I’m a very interested in the revision process. Between the time you won the Bakeless Prize and This Lovely Life was ready to go to print, your dear Evan died. Did his death affect how you reread and revised your manuscript? If so, how?

Vicki: I was scheduled to revise the book the summer of 2008, with a fall deadline. There were some scenes to include, and some deeper characterization to work on. Then my son died, and all bets were off. My editor told me to take all the time I needed, my friends offered to help in whatever way they could, and I simply felt my way, in my own good time, back to the writing.

The first change I made to the book was to add the epilogue, which I had drafted as my last piece (“Saying Goodbye”) for the column I wrote at the time for Literary Mama. After I wrote the epilogue I knew I could reapproach the book, that I had to, that my job wasn’t done and that as a writer I would have to find a way to do that job. It was not easy, but the book itself seemed to provide an actual physical solace and comfort. The phrase, “all we have are our words,” certainly took on a profound and resonant meaning for me.


Kate: Now that This Lovely Life is published, how does it feel to see your lives in print and have people react to your experiences? What are some of the responses you are getting?

Vicki: I like to say I wrote the book I wish had been there for me when I was going through these events. Now that the book is in print, I do find myself hearing from readers for whom this statement resonates. They recognize themselves in the events, the emotions, and the grief. Many of these emotions and reactions are in fact universal. And while I can see why mainstream publishing felt the story was too hard, it is unfortunately the case that grief and loss and death happen over and over in our culture, we just don’t get to read stories about it. We like happy endings, and miracles and so-called success. To put a face to a life like Evan’s, or to render honest feelings of imperfect motherhood like mine—it’s a gift for me as a writer to even approximate that goal.


Thank you, Vicki, for taking the time to answer these questions! Don’t forget that you can see Vicki in person on Thursday, September 24th at 7 p.m. at the Loft Literary Center in the Open Book in Minneapolis. I will be reading with Vicki and Kate St. Vincent Vogl. Free and open to the public!

Road Map to Holland

I’m always on the look-out for good motherhood memoirs, but I was recently lamenting the fact that there aren’t that many out there. Some would have us believe that the market is positively flooded with them, that there exists a glut of so-called “momoir,” but it’s not true. There are, certainly, a number of fine anthologies available, but really good book-length memoirs by women writing about motherhood? There aren’t that many. (And this, you understand, is not because I don’t think they’ve been written, but rather because they haven’t been published.)

So imagine my joy when I picked up Jennifer Graf Groneberg’s Road Map to Holland, which details Jennifer’s journey as a mother after one of her twin boys is diagnosed with Down syndrome.

I had read Jennifer’s writing—she blogs regularly at pinwheels and ParentDish, has a column at mamazine, and was the editor of the wonderful anthology My Heart’s First Steps. I had forgotten, however, that her twins were born prematurely, so I was startled to find myself diving into the NICU in the first part of her book. She writes it well. I kept thinking, yes, that’s how I experienced it as well. It’s full of the disorientation and confusion and the trying-to-make-sense-of-it-all to which most NICU parents will relate. And as Jennifer learns about Down syndrome, I learn about it, as well. I learned it is not Down’s or Down Syndrome, but “a baby with Down syndrome.” She writes: “I understand the desire to find language that honors the spirit of the child, and that also includes the medical diagnosis…”

All good memoirs are about an author’s relationship with the subject at hand. Thus Road Map is not about Avery’s Down syndrome as much as it is about Jennifer’s experience accepting the diagnosis and moving past it.

Road Map to Holland is certainly is a must-read for all parents whose children have Down syndrome, but parents who have lived through the NICU, parents of twins, and I believe all parents will find something in these pages that will resonate with them. It’s about more than coming to terms with a Down syndrome diagnosis; it’s about adjusting a worldview, breaking stereotypes, and opening oneself to the possibility of finding love in unexpected ways.

I had a chance to correspond with Jennifer about Road Map, and what follows is our e-mail interview:


Kate: One of the things I strive for in my writing and admire in yours is your honesty. Was it difficult for you to get to an emotional place where you could lay it all out there?

Jennifer: Perhaps oddly, no. Part of my experience with Avery had been sorting through the mistruths, and the half-truths, to find what was real. It never occurred to me to offer anything but my very most honest thoughts about it all, because to do less would just add to the problem, as I saw it.

Kate: Now that Road Map is published, how does it feel to see your lives in print and have people react to your experiences?

Jennifer: It feels very raw and vulnerable; really, a lot like it felt when the diagnosis was still brand new.

Kate: The book is chronological, except for the very beginning where you begin the story, and go back and begin again, repeating the events that lead up to Avery’s diagnosis. For me, this disjointedness so clearly reflects what it feels like to have a child in the NICU (and what I imagine it would feel like to first hear your child has DS), and it increases the narrative urgency of the book. Can you tell me a little about this? Did you always know the book would begin this way or did this opening come later in your process?

Jennifer: It always felt like the way to begin. Telling the story in a straightforward way would make it seem as if things were more clear than they were: in the beginning, I felt very lost, very confused. So the story begins with that confusion, and circles in and around itself, sometimes going over old ground, then new, then back over old territory again, as I tried to find a foothold. That's what it felt like to me as I was experiencing it, and I wanted the writing to reflect these emotions. As I find my way, so too does the story, and it eventually lines out in a more traditional manner.

Kate: Who are some of your literary influences? Why?

Jennifer: I love strong women's voices, and for a long while now, I've been obsessed with literary nonfiction. But recently, at the recommendation of my mother-in-law Joyce, I read Lisa See's Peony in Love. Her lyricism captivated me, and I so enjoyed reading a story set in the afterlife, which is something only fiction can do. Maybe I'm switching loyalties?

Kate: Are you working on another book?

At the moment, I'm still working on Road Map. I know that it's almost cliché to speak about writing a book in comparison to having a baby, but to me, it really feels that way. And right now, I'm in the fourth trimester. I'm not writing this story any longer, but I haven't quite let go of it yet, either.

One thought that keeps flitting through my mind relates to education. As Avery grows, and we approach school-age, I'm finding more confusion and misinformation and even discrimination. I'm not sure that these experiences will gel into a complete book, but they are much on my mind.

Thanks, Jennifer, for taking the time to answer my questions and for writing this lovely book.

blogging in my head

I'm sorry I've been silent for the last week. I've wanted to blog and have actually been thinking about blogging, but it's been impossible for me to get myself to the computer. Partly, this is because I have a new cold (or maybe it's the same cold with new life), and all I've wanted to do is lie on the couch. I've also been very busy, which means, of course, that very little couch-lying has actual happened, and which probably explains why I'm still feeling so lousy. Bad Kate.

My last class of the term meets tomorrow, though, and my last day of work for a couple of weeks is Thursday, so on Friday I'm planning to plant myself on the couch with a stack of books and drink fluids until I puke. Sounds like fun, huh?

Amidst the sickness, however, I have been celebrating a milestone for this pregnancy. I am now 28.5 weeks pregnant, which means the little bugger, if born today, would have over an 80% chance of survival and a 90% of escaping without a long-term disability. My blood pressure is still beautiful--yee-haw--and my wrists still aren't swelling. (I check them oh, four to five times a day.)

It's actually amazing how relieved I feel, even though we still have four weeks to go to pass Stella's gestational age at birth, and I know that having a 32-weeker is no picnic. But a 28-weeker's chances reassure me. I can't help it.

I'll be back blogging regularly now. I promise.

struggling with structure

No luck on Thanksgiving not gorging myself. In fact, I ate excessively all weekend. And now I have a horrible cold. (Not that these two things are related. I only wanted to point out that I’ve been uncomfortable—in slightly different ways—for many days now. With Sudafed off limits I’d actually go so far to say I’m now miserable.)

But enough complaining. On to more important things:

I’ve been thinking a lot lately about how successful essays are structured. I’d like to cull a couple of essays from my manuscript, but it’s such a daunting task—cutting and rearranging in an attempt to boil down 300 pages into manageable essays. I know writers who do this regularly, but it seems to be a skill I lack. How does one do it? If I had begun with essays and turned them into a book would it be easier? Or would it simply be a different struggle?

Yesterday in class we talked about structure, and I had my students read two essays: “Moonrise” by Penny Wolfson, about which I’ve already posted, and “The Sound and the Worry” by Suzanne Kamata. One of the reasons I chose these two essays was because both have taken large events that covered years and condensed them into manageable essays. “The Sound and the Worry,” published in the Summer 2004 issue of Brain, Child, is about Kamata’s daughter’s deafness (due to being born 14 weeks premature) and Kamata’s desire for her to have sound and, ultimately, find happiness. Now I know some of Kamata’s story and have referenced other essays and stories she’s written about her twins’ birth at 26 weeks. I know it’s a huge story, so what impresses me so much about “The Sound and the Worry” is Kamata’s ability to focus in on one strand of the story—her daughter Lilia’s deafness—and follow that through without getting distracted by everything else that I know was going on at that time. So impressive.

Wolfson does a similar thing in “Moonrise,” an essay about trying to come to terms with the inevitable end of her son’s life due to Duchene, a form of muscular dystrophy. It’s an essay about her son growing up and deteriorating all at once, about the fragility of life and at the same time about finding the beauty in life, even when it is fragile and finite. She is able to contain sixteen years of her son’s life in mere pages, and it blows me away every time I read it. Wolfson also has a memoir by the same name, which of course I need (and want) to read. Maybe it would help me see how one pulls an essay from a book. (Of course I don’t know if she wrote the book first and then the essay or vice versa. Maybe it doesn’t matter.)

You can’t access either of these essays online, but if you go to Brain, Child’s archives, you can order the Summer 2004 issue for “The Sound and the Worry.” You can find “Moonrise” in Best American Essays of 2002. (I guess you can access "Moonrise" online here if you are an Atlantic Monthly subscriber.) I’m also going to order Wolfson’s memoir, because I obviously need some help.

Also know that Suzanne Kamata’s first novel, Losing Kei is forthcoming in January. I’ll post about it then.

viable

I am twenty-four weeks pregnant today, which means that I’m carrying a viable fetus.

When we were contemplating a second pregnancy, and shortly after I became pregnant, I thought that these weeks—24 to 28—would be the most difficult for me. A baby born earlier than 23 weeks has virtually no chance of survival, but 24-weekers have a 25% chance of survival. A 25% chance of survival after four or five months in intensive care, after months on ventilators, after umbilical catheters and IVs in their heads and arms, after feeding tubes taped to their faces, after complications that you only learn about if you are forced to live through them.

Many 24-weekers end up with intraventricular hemorrhages (IVH) because the pressure of the ventilators can burst the fragile capillaries in their brains. This, in turn, can affect motor and mental development as well as cause blindness, deafness and seizures. Even preemies born later, between 30-35 weeks, are at higher risk for sensory integration and learning problems.

With all that I know about what can happen to babies born between 24 and 28 weeks, I thought I’d be terrified when I reached this point in the pregnancy. But strangely, I’m not. Oh, I’m still being careful, watching myself for swelling, and trying to rest (this week unsuccessfully). But I actually breathed a sigh of relief when I woke up this morning and knew I was caring a viable fetus. I have been holding my breath for the last ten weeks, since the morning I woke up in a pool of blood, and now I’m carrying a fetus that has a 25% chance of surviving outside my womb.

Don’t get me wrong—I want the whole nine months. One of my co-workers was due a few days ago and she has just been waiting, wondering when labor would begin, and I thought: oh, right, that’s how most people do this thing. They go nine months and then labor starts and they have their babies. It was as if I was thinking about birth for the first time.

But I don’t want to get ahead of myself. I’m still waiting to see what happens. I’m still vigilant. But if I make it past 32 weeks, I'll maybe even ask my doc about a vaginal delivery. For now, though, I know that every week—nay, every day—that passes gives the baby girl inside me a better chance at survival, a better chance at being born healthy. For now, I’ll hang onto that.


Note: I’ve already posted about some of the risks of prematurity, but it’s worth mentioning again, especially because November is Prematurity Awareness Month.

heartbreak and hoping

Oh why did I do this to myself? Why?

For class tomorrow, I’m having my students read Susan Ito’s “Samuel” and Suzanne Kamata’s “You’re So Lucky.” I chose these pieces to spark discussion about point of view, emotional distance, and writing about heartbreak. But I’m not going to talk about how talented I think both of these writers are or how pieces have been crafted because my response to their writing is so personal. I must, instead, record that.

You see, I’m sitting on my front porch in the sweltering heat, balling. I’m not talking a tear or two. I can’t catch my breath.

“Samuel” is Ito’s essay about her first pregnancy, which ended when she developed severe preeclampsia (it would probably be classified as HELLP syndrome today). At that point (and in 1989), the fetus, her son, was not viable. He needed two more weeks inside her to even have a chance at survival. But Susan would not have made it two weeks. She would have died. The only way to cure preeclampsia, no matter how far along the pregnancy is, is to deliver the baby. But because Samuel was not yet viable, the doctors had to stop his heart. He was evacuated.

Now, the whole essay is heartbreaking—clearly—but the part that hit me hardest was the moment when Susan’s husband, John, is taking her blood pressure in his office. They have no idea she has preeclampsia:

“I heard the Velcro tearing open on the cuff, felt its smooth blue band wrapping around me. I swung my feet and smiled up at John, the stethoscope around his neck, loved this small gesture of his taking care of me. I felt the cuff tightening, the pounding of my heart echoing up and down my fingers, through my elbow.

“The expression on his face I will never forget, the change in color from pink to ash, as if he had died standing at my side. ‘Lie down,’ he said quietly. ‘Lie down on your left side. Now.’”

I can see this. I can feel it in my bones. I know what it is like to feel hopeful and innocent. I also know what it feels like to realize your pregnancy is over, finished, that nothing will happen as you planned.

I was sent to the hospital for bedrest at 32 weeks because I was leaking protein in my urine and had swollen up like a blowfish. But, my blood pressure was still normal so I was just going to the hospital for bedrest, so they could “watch me.” When I arrived at the hospital, my blood pressure was no longer normal. It was 170/110. There would be no bedrest. They had to get the baby out.

Of course, I had a viable fetus, and I would later overhear a NICU nurse say, “A 32-weeker can practically walk out of the womb.” Well, not exactly, but we were lucky. We are so lucky. And maybe it’s because I know how lucky we are that I can’t stop crying now, as I read how things could have been for us, too.

I feel the same terror reading Kamata’s story. “You’re So Lucky” was written as fiction, in the second person, but it’s autobiographical, about the premature birth of Kamata’s twins at 26 weeks and their stay in a Japanese NICU. Kamata writes:

“You had been planning on starting a program of Mozart and poetry in the seventh month, had already picked out a layette in the Land’s End catalogue. You had just started wearing maternity clothes and ordered a gray cotton dress which hadn’t even arrived yet. You had an appointment the next week with a doula recommended by your hippee friend who lives in the mountains.”

But nothing goes as planned, of course. You must give up all your birth dreams.

In both Ito’s and Kamata’s pieces, I read part of my own story. And in fact, the first time I read each piece, I had an oh shit writing moment: I’ve written what she’s written. And it’s true. I talk about the “pre” in preeclampsia in a way similar to Ito. I describe being afraid to touch my baby in a way similar to Kamata. But now reading the pieces again, months later, I just say yes, that’s right. You’ve got it exactly right. I relive it through their words, their experiences, and now I can’t stop crying.

The other reason I can’t stop crying is because I can imagine it happening all over again. Their stories and my own are still a possibility for me. No one can tell me, exactly, what my chances are of developing preeclampsia again. And so I sit here on my porch in the sweltering heat, clutching my barely eight-week pregnant belly, balling and hoping and feeling crazy that I put these two pieces on my syllabus this summer.

But I had to because they do what I’m trying to teach my students how to do: write heartbreak without sentimentality, craft stories out of devastation.


Note: “You’re So Lucky” appears in the new anthology Not What I Expected: The Unpredictable Road from Womanhood to Motherhood and “Samuel” appears in It’s A Boy. I would also like people to remember that the latest abortion ban upheld by the Supreme Court does not contain an exception if a woman’s health (or life) is in danger. A fetus, even a nonviable one, has been given more weight, more importance, than a woman.

a choice, a responsibility

Last night I was watching the evening news—something I try never to do—and there was a story about the sextuplets just born in Minneapolis, at the same hospital where Stella was born. They are now on warming tables in the same children’s hospital where I sat for weeks, staring at my daughter.

The coverage of the story went like this: the couple decided on fertility treatment when they hadn’t become pregnant in a year. They were surprised to find they were carrying six fetuses, but they refused to reduce. Now they have six babies, born at less than 23 weeks. The smallest weighs less than 11 ounces. The reporter said, “The babies came a little early.” Call me crazy, but 4 months premature is not “a little early.”

Why, please tell me why, the media continues to cover high order multiple births this way. The pregnancy and births were referred to as a “miracle.” This is not a miracle. It’s a tragedy. This couple is living through hell, certainly, but there was no mention of the dangers of prematurity. No mention of the reality.

A preemie is not just a small baby. A preemie is not “cute.” Micro-preemies (born at less than 26-weeks) often do not “catch up.” That all preemies “catch up” by age 2 is a myth.

A 23-weeker’s eyes are still fused shut. A 23-weeker is still covered in lanugo. A 23-weeker’s lungs are underdeveloped. S/he will potentially spend months on a ventilator. Being on a ventilator that long puts a him/her at high risk for an intraventricular brain hemorrhage and for chronic lung disease.

The rate of premature birth increased 31% between 1981 and 2003. 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.

Between 1980 and 1998 the triplet/+ birth rate (the number of triplets, quadruplets, and quintuplets and other higher order multiples per 100,000 live births) increased by more than 500 percent, rising from 37.0 to 193.5. The number of triplet/+ born in 2003 was the highest ever reported: 7,663. (CDC’s National Vital Statistics Report Vol. 54, No. 2)

Write that. Cover that.

In my frustration over the coverage of stories like this one, I turn, as I always do, to literature. Suzanne Kamata has written one of the most honest, moving essays about IVF and selective reduction that I’ve read. Originally appearing in Brain, Child, her essay “Multiple Choices” was reprinted in the Utne Reader in 2000.

After a D&C at age 20 and an infection in her late 20s, Kamata and her husband used IVF to get pregnant. Three embryos took root.

“When I visit the doctor at eight weeks,” she writes, “all three are still there, growing and squirming in my womb. I love them all equally. I cannot bear the thought of giving one up. Of having one killed.”

But the thing is, she weighs the risks. She and her husband make the decision, the difficult decision, to reduce. And it’s a decision that may have saved her other babies. At 26-weeks, Jio and Lilia were born. How early would they have been without selective reduction? Would any of them have survived?

Technology helps many couples conceive. Technology can keep the smallest babies alive. But there are dangers associated with this technology, and I want to know why these dangers are not being discussed honestly (or at all). It’s not a black and white issue. Selective reduction would not be an easy choice. But isn’t it necessary to weighs the risks?

Kamata’s essay ends like this: “Yoshi and I heap adoration on our surviving twins, while the spirit of the third hovers, a reminder. And so I carry my guilt. In quiet moments, I pray for forgiveness, while out of love for my newborn children, I find it impossible to repent.”

Thank you, Suzanne, for this essay. Thank you for your honesty and grace. Thank you for talking openly about hard choices. I wish everyone were so brave.

running out of fear - mothertalk blog bonanza: fearless friday

Sometimes, it feels as if I am hardwired for fear. When I start awake in the middle of the night, every slammed car door or clanking muffler or raised voice on the street is full of portent. I jump from bed, heart pounding, and pull aside the curtains, just a little. I scan the street, check for danger.

I hate that I do this, and I don’t know where it comes from, this fear. During the day, I laugh about it, make fun of myself to my friends. I talk myself out of it—the imagined threats, the real threats, the midnight specters. But then night falls again, and I am up, checking the window, checking on Stella, listening, vigilant.

What is this about? Am I really this scared? (I haven’t always been this way, or at least not to this degree.) Is this just the way anxiety about other aspects of my life has decided to present itself? Some kind of fear transference?

It could be, and if it is, I have an inkling about the true source of my fear. It’s been festering for a while now.

I’m scared of having another baby. I’m scared of another pregnancy, of what can go wrong.

When I stare at Stella long enough, I see two versions of her. One version is whimsical, different each day. This version stands on the porch, jumps up and down and shouts “Sweeper truck! Sweeper truck!” as a blue truck rolls down our street, its huge brushes churning and scattering leaves and dirt. This version becomes a whirling dervish when I put on salsa music. She says, “Mom, let’s dance.” This version loves “Joy to the World” and sings it daily, though it’s painfully out of season.

The other version of Stella is fixed. This version weighs less than three pounds and lies on a warming table under bright lights. Her legs are thin as sticks. Tubes and wires snake across her distended belly and into the stub of her umbilical cord. A ventilator tube covers her mouth, reaches its slender arm down her throat.

I cannot reconcile these two versions of my daughter, cannot wrap my mind around the fact that one became the other. I can’t shake how lucky we were, how lucky she was.

And this is my fear, that we will end up in the NICU a second time and that we won’t be as lucky.

The things that scare me most are those that I can control least: war, environmental toxins, whether or not I will get preeclampsia again. So, what to do with myself, with all this anxiety?

I have found that the only way to sleep, the only way to not make myself crazy with worry is to run. Four times a week, I sit on our front steps and slip on my running shoes. I fasten my watch and adjust the Velcro on my visor. Then I run. I don’t run very far or very fast, but still, there is something about pumping my arms and legs, about pounding the ground underfoot that helps me let go of my need to control everything. And I have found, in the last weeks, that admitting how little control I have over The Big Fears, has actually made me feel less scared. I’m calmer. I wake up less frequently.

Will I ever be completely cured of my desire to micro-manage the world? Will I be able to make it through a second pregnancy free of worry? Probably not, but when I really start to spiral, I now know that the best thing I can do for myself is to get outside and run, as far and as fast as I can.

Fearless Friday was inspired by Arianna Huffington - On Becoming Fearless. To read all the fearless blogger posts, visit MotherTalk.

prematurity, disability, and Past Due

I have been thinking about this for a couple of weeks. On February 20th, there was a story on NPR about the gestationally youngest (known) preemie to survive--ever, anywhere. Her name is Amillia and she was born at 21 weeks and 6 days gestation (a little more than half the gestation of a normal pregnancy). She was 9 1/2 inches long (think ball point pen) and weighed 10 ounces.

Amillia is not the smallest preemie to survive. Two years ago, Rumaisa Rahman was born at 25 weeks and 6 days gestation weighing 8.6 ounces (think lighter than a can of pop). The thing that angered me when Rumaisa's story was all over the media was that people kept saying that she was "perfectly normal," and that they expected her to develop "normally."

The focus of stories about extreme prematurity is often on how the babies were "saved," how they're "miracles." But little attention is given to the long-term effects of severe prematurity. The truth is that it remains the #1 cause of disability among newborns.

The thing that I appreciated most when I listened to Amillia's story was the cautionary note in Dr. Paul Fassbach's voice. He said that Amillia's case was specific, and that though she seemed to be doing well, there were still issues that might arise with her brain development. He said the American Academy of Pediatrics did not recommend intervention in the case of babies as early as Amillia, and he "worries that parents of other extremely premature babies will hear Amillia's story and expect the same outcome."

Now, it's hard, nay impossible, for me to say what I would do if I were in Amillia's mother's situation. Amillia was teetering on the edge of viability. Would I say, no, don't do anything to try to save her? Or would I go all out? I don't know. Can anyone know, for sure, what they would do in this situation? The thing is, I know what can go wrong. I am intimately acquainted with the neonatal intensive care unit (NICU). I know a 23-weeker who had a grade 4 brain hemorrhage, encephalitis, and CP, and who will never speak or walk. But I know 23-weekers who are, except for a slight limp or glasses or math processing problems, fine.

But you can never know. And the question that I keep coming back to (and which makes me very uncomfortable) is this: just because we can save 21 and 22-weekers, should we? How far should we push this? That early, most babies will die, or have severe disabilities. But then there are babies like Amillia.

There is a wonderful memoir called Past Due: A Story of Disability, Pregnancy and Birth by Anne Finger, which explores the complexities of disability and reproductive rights. Finger, who won the AWP Award for Short Fiction in 1987 (for her collection Basic Skills), was one of the last people in the U.S. to get polio. In Past Due, the story of Finger's pregnancy and birth of her son are couched in a larger discussion of disability and reproductive rights.

The book is often gritty. Finger never shies away from the hard questions (as I am probably doing here, by turning to her). She writes about a meeting of the Committee to Defend Reproductive Rights where she was asked to speak about disability and reproductive rights. The discussion was tense, and at the end of the meeting, Finger says, "What it all boiled down to was, did I really think that disabled people were as good as everyone else? Was I really saying that a disabled life was worth living? I was too stunned to respond to them very well. What seemed obvious to me--that a disabled life was worth living; that our lives weren't endless misery--seemed dubious at best to them."

When there are complications with her son's birth and he ends up in the NICU, all of these issues come up again.

Finger has written a several other books; the most recent is Elegy for a Disease: A Personal and Cultural History of Polio. I have not read it, but I will. She's not afraid of asking the hard questions, and I need her help.