Friday, November 26, 2010

We need some pumpkin pie, stat!

Winter swept in like a lion, and it has brought with it nearly constant illness. 3/4 of the family, not to mention everyone who came to visit the house two weeks ago, was laid low with a nasty stomach flu. Runny noses, hacking coughs, whiny boys and some seriously smelly diapers have been ubiquitous ever since.

All this sickness has taken its toll on Bryce. Two months ago, he was just over 21 lbs. Today at his "eighteen month" (actual) check-up, he was ... just over 21 lbs. He's lost nearly half a pound since his hospitalization and it shows. Bryce's arms and legs are toned, with nary a fat roll to be seen. He looks positively elfin in his baggy winter clothes, which isn't surprising since he's near the 25th percentile for height but has dropped to the 8th percentile for weight.

You'd think that the abundance of calorie-laden Thanksgiving goodies would take care of that problem in short order, but it seems that Bryce's eating habits have changed as well. The boy who used to consume nearly as much pizza as Daddy for dinner can no longer be counted on to finish a single Ritz cracker. Bryce has become a textboook grazer, and the few foods that he will eat with regularity (bananas, crackers, cheerios) aren't exactly fattening fare.

We were also disheartened to hear that Bryce's pediatrician has now jumped on the "Bryce's speech is delayed" bandwagon. At close to 15 months adjusted, he still has no words, nor does he use sounds or sign language to name things. The closest thing we get to communication from Bryce is an impatient whine accompanied by vague pointing. However, he definitely understands language, and he's doing so well in other areas that the doctor thinks it's probably a fine motor skill delay, and not a neurological problem. He still has a few months before he'd be more than a "late talker", but it's easy to worry about any deviation from normal when his first four months were so extraordinary.

In spite of the recent minor drama, we've got a lot to be thankful for this year. Bryce is rapidly evolving into a vivacious toddler, and our family has been blessed by a year of relative calm, health and the little joys (summer vacation, holiday gatherings, lazy weekend mornings) that were conspicuously absent last year. I'm cautiously optimistic that by this time next year, I will find myself truly at a loss for words regarding the serious day-to-day impacts of Bryce's prematurity because there will be nothing to say!

We hope all Bryce's fans enjoyed a pleasant Thanksgiving!

Saturday, November 13, 2010

Prematurity Awareness

"The moment one gives close attention to anything, even a blade of grass, it becomes a mysterious, awesome, indescribably magnificent world in itself." - Henry Miller

Like Mr. Miller, I find myself savoring simple joys. In my case, it's not a blade of grass, but rather early weekend mornings spent exploring the world with Bryce. I typically wake hours before the rest of the household, but once in a while Bryce will get up early too. As soon as I hear him call out, I bound up the stairs two at a time, partly so that my wife and older son can sleep in, but largely to bask in the huge smile that lights up his face every morning.

There is some indescribable feeling, almost mystical, that washes over me when I have time to sit with Bryce and discover the world through his eyes. All parents take pride in their children's achievements, and certainly I have enjoyed watching Logan grow up. However, when Logan was an infant, I expected that he would walk, that he would talk, and that he would, in fact, grow up! Our experience with prematurity forced me to re-evaluate my expectations, and has kindled an appreciation for the beauty of things I overlooked in the past. With Bryce, every new skill, every new sound, every blink of the eye is sublime. If I could bottle that feeling and sell it, I'd never have to work again.

I recently received an e-mail from the March of Dimes encouraging preemie parents to share their stories in support of prematurity awareness month. Happily, we are rarely aware of Bryce's prematurity ourselves these days. We occasionally receive an unwelcome reminder of his early arrival, like the scare of two weeks ago, but we are fortunate that Bryce's prematurity has touched him lightly. However, for many preemies, this is not the case. For all too many, post-NICU life is fraught with challenges.

For Bryce, prematurity means a couple winters of trying to avoid respiratory infections and once-a-day inhaled steroids. For too many, prematurity means frequent hospitalization, oxygen therapy, a slew of medications and years spent living in fear.

For Bryce, prematurity means a waist that's a little too slim (20 lb., 9 oz. @ 15 mos. adjusted). For too many, prematurity means extreme growth issues, food aversions, severe reflux, special diets, and gastric feeding tubes.

For Bryce, prematurity means that he has to wear glasses. For too many, prematurity means severe or total vision and/or hearing loss.

For Bryce, prematurity means that he's a few months behind on his speech development. For too many, prematurity means cerebral palsy, attention deficit disorder, and countless other physical and mental challenges.

Prematurity is not an easy foe to defeat, but there are many ways you can help. You can support medical research through donations to the March of Dimes, the Minnesota Medical Foundation, St. Jude's or other organizations dedicated to childrens' health. You can also donate time or money to a local NICU to help support families in crisis. When we were in the NICU, some good souls donated handmade knitted hats, clothing and blankets for the preemies. Another couple would take a pair of preemie parents out for a steak dinner once each month. Little kindnesses like this go a long way for those who've had their lives turned upside down. Finally, you can help spread the word so others know that iPhones and Facebook aren't the only ways to invest their resources.

It's easy to get caught up in the hustle and bustle of everyday life; I'm plenty guilty myself of losing sight of the important in favor of the urgent. However, if a few words or a few dollars from me means even one more parent will get to enjoy Saturday mornings with their son or daughter, then my time and treasure have been well spent.