Sunny Side Up

Looking back at the posts over the past year or so, I realized that my reports on Bryce's progress have slowly evolved from a story of hope, that focused on the few bright spots in a deluge of bad news, to a story of anxiety that all too often lingered on his few remaining prematurity-related challenges. This is *not* the message that I want to send to future preemie parents, many of whom will have to cope with serious difficulties long after they leave the NICU. So, I'm going to make an effort to post more updates about the happy times that dominate our lives. We don't know what tomorrow will bring, but today, life with Bryce is very good.

Bryce is sixteen months old (adjusted), and every bit a toddler. He is walking almost exclusively, but he's still working on his balance, so his forehead has been decorated by a bruise in one spot or another for the past month. Bryce is very different from his big brother in that he has absolutely no fear and climbs on everything. We've had to remove furniture from the house so that he doesn't break his neck! If you have children who watch Dora the Explorer, you'll understand why the phrase "Climber, no climbing!" is oft-repeated around here.




Bryce has a natural love for music that I find remarkable. Almost every time he hears music, Bryce start dancing to the tune. I don't mean just bob your head and shuffle your feet dancing -- this boy knows how to boogie (didn't get that from me)! His favorite dance moves include a rhythmic chopping of his arm, a flexing of the knees that resembles a mini-squat, and a full 360 degree spin. The latter is especially comical because he does it so quickly that he can barely keep his balance, so he always looks like he's just about to fall. His frequent glances at Mom and Dad to make sure they're watching suggests he's also something of a showman (didn't get that from me either).


Our little squeaker has moved on from squeaking, but still doesn't have any actual words. He does make a number of sounds ("ma", "da", "ee", "ooo"), and he applies some sounds consistently. When he's driving a toy car he'll make a "vrroom" sound, and when he eats something he doesn't like he says "eck" before he spits it out. His understanding of language is also extremely good. If he hears the word "bath", he'll make a beeline for the bathtub even if it's clear across the house. If you ask for a kiss, he'll grab your face, turn it to the side, and plant his lips on your cheek. Bryce also knows the sign for "please", and uses it consistently to indicate that he wants something.


Two sounds that we've heard all too often this winter are Bryce coughing and Bryce wheezing. It seems like he's had a cold since November, and its intensity ebbs and flows. We've been giving him a preventitive inhaled steroid (Pulmicort) once a day and his regular bronchodilator (Albuterol) multiple times per day for the entire winter. There have been a couple periods when he was congested enough to warrant an oral steroid and broad-spectrum antibiotics as well, but even then his oxygen sats we're remarkably high. Enduring 10-15 minutes with the nebulizer multiple times per day is a challenge for Mommy, Daddy and Bryce, but he has not been fighting quite as ferociously since we started allowing him to watch TV during the ordeal. The good news is that we've very optimistic that he'll be one of those preemies who outgrows the worst of his Chronic Lung Disease by age 3 or so.


Bryce is still a very picky eater. The foods that he'll eat consistently include bananas, Kraft Mac N Cheese, Pizza and Oreo cookies. This limited diet is not for want of a variety of foods; when presented with whatever Mom and Dad are having for dinner, his typical reaction is to start throwing it on the floor. He is better about eating his vegetables than his big brother, which means he'll eat one green bean instead of turning his nose up at everything. Like their father, both boys love sweet potatoes (especially with a little brown sugar), but like their mother, neither will come near broccoli. We're moving in the right direction on the weight issue, so at least we know he's not starving: he's up half a pound to 21.5 lbs.


Finally, I don't think anyone will be surprised to learn that the boys had a wonderful Christmas, received far more toys than they needed, and are loving every one of them. Happy 2011 to all our readers!

The NICU Christmas Project

Forty-six beds in the NICU. Forty-six holiday baskets. Two very excited former NICU parents.

A few months ago, we received a letter soliciting donations from the Children's Hospital that houses the NICU that touched our lives so profoundly. I've been plunking down a dollar at the gas station every now and again in the hopes of dedicating a wing in honor of Bryce and Chloe, but alas, those little ping pong balls that turn ordinary Joes into Powerball millionaires have been uncooperative. Thus, I've been wracking my brain trying to come up with an alternative that's within our means. Sure, we could send a modest donation to the hospital that would cover the cost of fifteen milliseconds of care for some unfortunate baby, but Christie and I were eager to do something more personal for NICU families.

About a month ago, I gave a talk on prematurity awareness to the Land O'Lakes Buttermasters, a local Toastmasters organization that I'm a member of. Part of the speech covered the many ways those sympathetic to the cause could help in the fight against prematurity, and out of this talk the idea for the NICU holiday baskets was born.



Thanks in large part to some very generous donations from the Buttermasters, we were able to put together forty-six holiday baskets for families with a plethora of goodies, including a copy of our all-time favorite children's book ("I Love You Through and Through", which we still read to all 3 kids regularly), a tiny stocking for the isolette, a create-your-own Baby's First Christmas ornament, a St. NICU bookmark and more.

Best of all, our social worker from the NICU and the medical staff graciously accompanied Christie and I as we spent half an hour hand-delivering those baskets to the bedside of each family who'll be spending their Christmas in the ICU, rather than gathered 'round a cozy fire in front of the Christmas tree.



I'm eager to see the smiles on my kids' faces when they tear into their Christmas presents on Saturday morning, but I don't know that I've ever been as excited about giving a gift as I was this afternoon. It's difficult to describe the profound joy and satisfaction I felt in being able to provide some small token of our empathy for those families who'll have much more than mall traffic and sold-out toys to contend with this holiday season. The brilliant smile on my wife's face said that she felt the same. Provided the NICU is willing, the Christmas Project is sure to be a holiday tradition for Bryce and company.

Thanks again to everyone who made this afternoon a reality and Merry Christmas!

Toddlin'

As of this morning, Bryce rarely stood unassisted, and the few steps he'd taken were because he'd been tricked into it. Even then, it was never more than one or two before he'd drop to all fours. As of this afternoon, well, see for yourself...






He never ceases to amaze.

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!

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.

BOO!

This is our first update for October, and fittingly, it's a slightly scary one. Bryce spooked everyone last night when what seemed to be a mild cold suddenly turned serious. I was at a working dinner when I received the dreaded "please call asap" text message. Bryce had recently awakened from his afternoon nap, and he was clearly struggling to breathe. Christie tried our old friend albuterol first, but it didn't seem to ease his breathing at all. When he emptied out the entire contents of his stomach and turned pale as a ghost a little while later, she decided to whisk him off to urgent care.

Four hours, one chest x-ray and one round of steroids later, they decided to admit Bryce to the hospital. His "sats" (blood-oxygen saturation levels) were in the low-80s, and he needed a little extra oxygen on top of the meds to ease his ragged breathing. Furthermore, the doctor at our local hospital thought his lungs looked sketchy, and felt that it would be best to transfer Bryce's care to a pediatric pulmonologist. So, Bryce was taken by ambulance to the first home he ever knew, the University of Minnesota Amplatz Children's Hospital. He didn't arrive until the wee hours of the morning, and by then the steroids had started to kick in, so Bryce and Mommy settled in to "sleep" at the hospital for the rest of the night.



The diagnosis this morning was "some virus that hit him in the wrong way." I'm happy to say that he was back to his usual cheery self upon his discharge this afternoon, although 90 minutes of non-stop screaming this evening coupled with coughing fits that leave his lips tinged with blue have reminded us what it means for a one-year-old to "have the lungs of a fifty-year-old lifelong smoker." That healthy lung tissue can't grow fast enough!

Given the condition of his lungs, we've worried for more than a year that this day would come. I'm not at all happy that our fears were justified, but I am relieved that it happened in October 2010 instead of October 2009. A night spent twisting the bed covers in knots while the rain pelted down reminded me how fortunate we are that this is the exception, rather than the norm.

Late October is a time when the ghosts, ghouls and goblins come out to play; it's too bad that the unwelcome germs feel the need to join in. May your Halloween frights be the pleasant kind!

Unequivocally one

I had every intention of finishing this post two weeks ago to celebrate the anniversary of Bryce's homecoming from the NICU and his official adjusted birthday. Unfortunately, I've managed to let my life get so busy that by the time I have a few minutes to write, I'm already dog-tired. Hopefully Bryce will understand when he's old enough to be interested in reading this. :)

The upside of my tardiness is that I can share the results of Bryce's one year exam at the NICU follow-up clinic yesterday. As luck would have it, the physical exam was conducted by the same neonatologist who admitted Bryce to the NICU what seems like a lifetime ago. His enthusiasm and amiability once again put us at ease, except this time the the mood wasn't tempered by a grim diagnosis. The doctor was thrilled with Bryce's progress and said that he is definitely at the head of the micro-preemie class. 21 lbs. and 29" tall is not very big compared to most kids his (adjusted) age (~15th percentile), but he's in the 80th percentile compared to other Very Low Birth Weight (VLBW) babies. This is especially impressive because Bryce was actually an Extremely Low Birth Weight (ELBW) baby, so he's competing against babies that were 2-3 times his size in this comparison. Our only concern about his physical development is that we may have to take on second jobs as he gets older to provide the mass quantities of food he consumes to maintain that growth!

Near the end of his exam, the discussion turned to the looming cold and flu season. A year ago, we were told that Bryce should be isolated as much as possible until he's two years old to give his lungs time to develop healthy tissue. Bryce's primary pediatrician, who is typically the least conservative of his doctors, said his lungs and immune system are much stronger, but that we should avoid crowds and large family gatherings. The neonatologist concurred with the first part of this statement, but said that Bryce should just be isolated from people who are sick. Unfortunately, both doctors agreed that he's too healthy (by insurance standards) to qualify for the Synagis shots which protected him from RSV last winter, but not healthy enough to avoid landing in the hospital if he caught it.

Given that the virus season is also the holiday season, we'd vastly prefer to follow the second doctor's advice. However, wiping down everything an increasingly mobile baby might touch with antibacterial wipes and interrogating family about the status of their health is also stressful, so we'll probably end up falling somewhere in between isolation and cautious freedom. So, if Bryce can't make it to your party, blame it on those nasty little germses.

Bryce also visited with a child psychologist at his follow-up exam. Like most people who meet Bryce, his first comment was, "Oh, those are some cute glasses", and then, "Is he always this happy?" Thankfully, the answer to that question was yes for the duration of Bryce's Bayley Infant Development exam, and his scores reinforced our optimism about his future. Bryce is currently demonstrating the cognitive skills of your average 14-month-old, the fine motor skills of a 15-month-old, the gross motor skills of an 11-month-old and the language skills of a 9-month-old. All in all, we felt that this was an outstanding report card, and the doc said he has no concerns about Bryce's mental development. He's cleared until next September!

Like all micro-preemie parents, I made a lot of bargains while Bryce was in the NICU. I'd come to accept that life, no matter it's limitations, is a beautiful thing, and I desperately wanted that for Bryce. However, even my most naively optimistic visions of our future together pale in comparison to our reality today.



-4 months old : Our "wimpy white boy" (yes, that is a technical medical term) is clinging to life. His parents live in a state of constant panic. Bryce refuses to give up.


-3 months old: Still critical, but stable. Bryce overcomes life-threatening challenges every day.


-2 months old: Survival is likely, as are significant medical challenges. Odds are that Bryce will be effectively blind. Bryce stubbornly fights on.


-1 month old: Learning to eat and breathe. Bryce endures nasty apneic spells on a daily basis.


"Newborn": Bryce is home! He can't take in enough calories to meet his needs, and his parents fear he will be re-hospitalized for failure to thrive. Bryce is too busy growing to worry.


1-2 months old: Bryce is growing slowly, but spends most of his time in various specialists' offices. His parents fret about upcoming surgeries and other challenges. Bryce starts showing off his trademark smile.



3-4 months old: Bryce's health is improving and he's starting to show a little personality. Bryce's parents fret over every potential exposure to germs. He's already conquered many of his preemie challenges.


5-6 months old: Bryce struggles with the occasional respiratory infection, and is nearly hospitalized twice, but he never complains. His infectious smile puts everyone at ease.


7-8 months old: Amazingly, Bryce has functional vision that can be corrected to near normal sight. With every passing day, his parents treat him less like a preemie and more like a baby.


9-11 months old: Bryce is a happy, healthy boy. The entire family enjoys a fabulous summer.



Today: Need I say more? I wish I had one tenth of the courage and perseverance of my son. Thank you, Squeaker, and enjoy your reward.