Tuesday, November 17

Fighting For Preemies: Bloggers Unite

"A bear and a hare have been to the fair. But not the hippopotamus." — Sandra Boynton, But Not the Hippopotamus

Every morning, well before sunrise, I would place Boynton's book next to my cell phone so I wouldn't forget it. It didn't really matter if some of the other Boynton books we kept might have read more upbeat. The story seemed to fit.

As other babies were being born to wide-eyed parents and heading home to be bundled in blankets, doted over by grandparents, and set free to start their adventures, our daughter had taken a detour. Every day was a fight for life inside the Summerlin NICU.

No one really knows why there weren't any warning signs on the first morning. My wife had simply noted that our daughter's kicking, which had started earlier than expected, had suddenly tapered off. Initially, the sudden change was almost dismissed, given that we hadn't even entered a kick counting stage of pregnancy. Instinct over intellect proved to be wiser.

It only took a few hours in the hospital to discover the truth. Our daughter was dying, and even the specialist who had been called in seemed uncertain as to why while listening to the amplified throb of her heartbeat, steady and strong, except every ten minutes or so when it would slow and drift quietly under the hastened pace of the hospital.

"When that happens, make a noise or do something to excite her. We can't let her drift off before your doctor arrives."

The task seemed easy enough, especially after surrendering to the gravity of the situation. Telling my son, after noticing the entire day had drifted away to indecision, when I picked him up from summer camp to take him to his grandparents so I could make it back, was more difficult. The excitement of having a sister in three months was all he could talk about.

"Well, I need to tell you something," I said during the car ride. "Your mom might have the baby today and there is a problem..."

She might not come home from the hospital for awhile. She might not come home at all. "She will," he said with certainty.

She wouldn't come home for three long months. As I was running up to the doors of the hospital, my cell phone buzzed with the news. Our doctor had arrived and they were prepping my wife for an emergency Caesarean. There was barely enough time to scrub.

Our daughter was born 2 pounds, 13 inches, at just under 28 weeks. Just a few days earlier, the survival rate would have been reduced to a coin toss. The odds are a bit better today, but there are no promises. If there were, they wouldn't change the location of the incubators to prevent visiting parents from becoming attached to neighboring early newborns. Too much can go wrong. Too much does go wrong.

For parents, having premature babies is best described as being like a Ferris wheel. Some days you leave the NICU with the anticipation they will be released in a matter of a few days. That can all change in a day. Or in an hour. Or in seconds, sometimes while you're sitting bedside (incubator-side) reading a story so they can become familiar with the sound of your voice. And you learn to step aside for the nurses.

And you learn to have patience in adversity, when real courage might mean standing firm as opposed to flying off to parts unknown. And you learn that every treatment carries a potentially permanent consequence. And you learn that tolerance for transparency carries a certain quota because people do not generally want to know the truth. They mostly want to know that everything will be all right so they can marvel at the resolve or maybe faith.

Over the course of the next three months, our daughter almost died or almost had permanent damage while undergoing 28 medication administrations; on and off respiratory support, ranging from ventilators and high air flow nasal cannulas; and 48 different medical procedures, ranging from phototherapy and blood transfusions to upper GIs and a lumbar puncture. She overcame two organism infections and five staph infections, with the worst of it being an infection that had adhered to her ankles and required surgery.

At the end of Boynton's book, the hippopotamus eventually is asked to join the other animals in their fun activities and adventures. Even after being discharged, there would be prolonged procedures, medications, and side effects. And even when the worst seems to be over, it's never really over. And yet, we're blessed.

"A bear and a hare have been to the fair. But not the hippopotamus." — Sandra Boynton, But Not the Hippopotamus

At the end of the detour — made amidst a gubernatorial primary, business expansion, and non-profit obligations — you come to realize the experiences we have are not a byproduct of the environment in which you reside or merely timing of events or even the perception of other people. Good or bad, experiences are what you make of them, wherever you are or whatever you're doing.

Of course, we can influence all those other things to some degree. And that is what I might ask you to consider today.

While the why behind the cause of our daughter's premature birth will never be solved because we did everything right, many preterm births can be prevented with prenatal care. It's important because every step you take can help reduce preterm birth, which accounts for more than one million of 13 million stories that don't end like our daughter's story or the analogy I made with Boynton's book.

Education will provide a means to solve part of the growing challenge. The rest comes from generosity and vision, as the numbers above only reflect a success rate of infants born preterm including 36 weeks. For babies like my daughter and those under 26 weeks, the success rate relies almost exclusively on medial research funded by people like us and you through the March of Dimes.

For those who already have helped, thank you. We're grateful, because it made a difference.


Unknown on 11/17/09, 12:44 PM said...

Rich, thanks for sharing your story. Before reading a lot of the posts for #fightforpreemies, I never realized how much of a struggle preemies face and the tremendous amount of care they require. It is through posts like yours that I have learned so much about the experience of having a preemie.

MoDBev on 11/17/09, 1:13 PM said...

Rich, what a beautifully written post. Having a preemie is a heart-rending struggle everyday even when she gets home from the NICU. Sharing your story will help many people understand, just a little, the long journey of prematurity.

Thank you for all the help and support you gave to the Fight for Preemies event. I would say the event is a success.

Rich on 11/17/09, 4:16 PM said...

@Jason and Bev,

Thank you both so very much. I'm glad to see such positive traction behind the campaign and I sincerely hope we can successfully set up some post-event continuation.

All my best,


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