And They Lived Happily Ever After

In May 2009, our family was in crisis. The odds for our micropreemies were dire - 50% mortality, 90%+ morbidity - and we were asked to make care decisions that no parent imagines they'll have to make. At the time, I was desperate for information on outcomes, and, more than anything, for a story that would serve as a buttress against the fear that threatened to consume us.

This is that story. Bryce turned 14 today. He is a straight-A student in Honors classes at a respected public school. He's in improv theater, and plays the piano. He runs Cross Country for the middle school, and enjoys swimming with his friends in the pond behind our house. He is a First Class Scout, and a history buff. He is a respectful, responsible, resourceful young man any parent would be proud of.

In this blog's penultimate post, we were celebrating Bryce's average size. Today, he's taller than most fourteen-year-olds; he stands level with me, and since his feet are a full size larger, I expect to be looking up at him soon. And his health? A few months ago, Bryce had a tearing cough for weeks, and we didn't even consider taking him to a doctor. Not because this is normal for him (it's not), but because we had no fear that it was a serious risk. Considering where we started, the change is mindboggling.

This blog hadn't crossed my mind in years, and I'm not sure why it bubbled up in my consciousness now. I'm glad it did, though, because it gave me an opportunity to share this one last thought: if you are that new preemie parent - terrified, confused, wondering how you can go on - I want you to know that Bryce's prematurity plays no larger a role in his life today than most children's lack of it. It's not a short road, but with the incredible medical care available today and a little good fortune, a happy ending is attainable.

This is the end for A Twin Story, but only the beginning for Bryce.

Million Dollar Baby

I almost missed AOL CEO Tim Armstrong's insensitive attempt to pin benefits cuts at his company on million-dollar "distressed babies" earlier this year, but it was impossible to overlook the cover photo for the feature article in the May 22nd issue of Time magazine, "Saving Preemies." That article, and the five-year anniversary of Bryce and Chloe's premature entry into the world, inspired me to write one more (last?) update on our own million dollar baby.

June 25, 2009: At one month old, still barely a handful
Five years ago, we were still in shock over the abrupt loss of our daughter, the comparatively "healthy" twin. I remember lying awake at night, eyes raw after another bout with grief, wondering if Bryce's heart was still beating. Sometimes, I would call--fortunately, the NICU is used to receiving calls at 2AM from desperate parents--and some angel in scrubs on the other end of the line would dampen my fear to a manageable level.

June 2010: A glimmer of the smile we take for granted today
One year later, our world had change dramatically. Bryce was at home, and we were celebrating a marked improvement in his respiration and a 25th percentile placement on the growth charts for his adjusted age. I was still peeking in on Bryce at night to double check his breathing monitor, and the air in our house was often rich with the smell of nebulized albuterol sulfate, but I was no longer certain that the next emergency was lurking just around the corner.

June 2014: Being a huge fan of Disney/Pixar's "Up," Bryce's favorite thing to do with Daddy is to play with his flying house
Flash forward to June 2014. It's early on a Sunday morning, and I would feel positively foolish sneaking into Bryce's room to check if he's breathing. Bryce hasn't been to the hospital since the summer of 2012 (stitches after a fall), and he hasn't had a prematurity-related emergency since late 2010. The nebulizer is collecting dust on a shelf in the closet, and most of the medication is long expired. Parenting any child is a challenge, but the added stress of incessant medical appointments and extreme germ vigilance is largely a thing of the past for us.

May 2014: A boy and his robot cake
A few days after his fifth birthday, Bryce was in the fiftieth percentile for height, and not much behind that for weight, for his actual age. In fact, he's only a smidgen shorter than his full-term big brother was at the same age. His peanut butter, cheese and ketchup sandwiches will never be widely popular, but we don't have any serious concerns about growth or feeding disorders. At his NICU follow-up exam a few months ago, the doctors were giddy over how well Bryce did on his mental aptitude tests. He is intelligent, creative and curious, with a memory that puts mine to shame. If we're honest, the main reason we're holding him back from Kindergarten until he's six is because we're not ready.

Bryce's silly face
If you've met Bryce, then you know that he is bursting at the seams with vitality. If I could bottle and sell his zeal for each day, I have no doubt that we could use the proceeds to cover the expenses of dozens of fellow micro-preemies and still have plenty left over. Yes, he has a tendency to get overwhelmed by excessive sensory stimulation (many crowded places are "too loud"). Yes, he can be easily distracted at times. And yes, he will probably always wear glasses to correct significant myopia. If we're looking for them, we can find myriad ways in which Bryce was touched by his prematurity--but only if we're looking for them.

Soaking up the California sun

Preschool graduation
And that, my friends, is the miracle. On a day-to-day basis, neither Bryce's life nor our own are defined by his prematurity. In that respect, he truly is a "million dollar baby." On the very first day, we were confronted with daunting statistics and terrifying words like "make them comfortable," "brain hemorrhage," and "special needs." (I have a very different perspective on labels like the latter today, but that's a different story.) If you had told me five years ago that we'd be playing catch together on a summer day, or running in the ocean surf, or that he'd excel in a mainstream preschool, I would have been skeptical. If you'd have told me that he would graduate from high school, maybe even college, and that he would possibly get married and father children of his own some day, it would have struck me as insensitive to the realities of the situation. And yet, it doesn't seem far-fetched at all today.

Bryce's million dollar smile
I don't know what tomorrow or next year will bring, but I know one thing: this little guy will be smiling, and that's enough for me.

Terrific Two!

Since the day he decided that barely more than half the normal gestational period was enough for him, Bryce has challenged the conventional way of doing things. Though that first act of rebellion sorely vexed us, we're quite pleased that he's decided to forgo the terrible twos in favor of the terrific twos.

Lung disease? What lung disease? There was a spell of wheeziness and a perpetually runny nose earlier this Spring, but we suspect that may have been allergies. At his two-year check up last week, the pediatrician said, "His lungs sound excellent, how many steroid treatments are you giving him each day?" Steroids? What steroids? The doctor was flabbergasted.




He's done some catching up in the growth department, but in some areas more than others. At 22 months adjusted, he was 33.25 inches tall, weighed 24.1 pounds and his head was 48.5 cm around, which puts him in the 32nd, 11th and 50th percentile, respectively. Although his big brain will serve him well in the information age, the doctor was a bit concerned about the disparity between height and weight. Bryce is typically an excellent eater and "stout" is rarely used to describe micropreemies, but we'd also like to see him put on some weight. On his second (actual) birthday, he weighed 23.5 pounds; Logan weighed the same on his first!



One of our biggest challenges these days is communication. On his second birthday (scarcely a month ago), Bryce had one word that he used spontaneously - "Uh oh." Both Bryce's pediatrician and his speech therapists agree that he is well behind, so he has been going to speech therapy two to four times a week. Fortunately, this is an area where we've seen great progress. As of today, he has at least six more words: "Mama", "Dada", "All Done", "Go", "Hat" and "Please." He only pronounces the consonants in the first two - the last four are pronounced "ahh uhh", "ohh", "aah", and "eeee." He'll imitate many more words (vowels only), and we suspect he has more that we just can't understand. Expressive communication will probably be a challenge for Bryce for some time to come, but we're thrilled that he's made so much progress lately. Watching him toddle towards me at full speed, arms outstretched, exclaiming, "Dada, Dada, Dada," is an effective salve for even the longest day.



Most of all, Bryce is a very content child. He usually sleeps through the night, and in the morning he's ready to take on the world. He doesn't like to be constrained, but if left to roam in the playroom, the driveway or the backyard, he nearly always has a gleam in his eye and a smile on his face.




Thanks to everyone who has supported us during the last two years, and we expect more good things to come!

Two years ago

Dancing and laughing, she fills heaven with mirth
our sweet little angel, asleep in the earth



Sorry for the long delay between posts; we've been swept up in new grand adventures. Look for an update on the little squeaker, who's added several new sounds to his verbal repertoire, shortly.

Last call for Team Squeaker 2011!

Do you want to help ensure fewer babies have to start their lives like this?



Do you want to see that same little baby cross the finish line on his own two feet for the first time?




Join Bryce, ^Chloe^, friends and family this May Day for the 2011 March for Babies! Thank you to the many past supporters who have already committed to the walk or a donation for this year. If you're still on the fence, here are seven great reasons to participate:

1. History of Good Works: With the money raised last year, March of Dimes was able to provide comfort and information to thousands more families with a baby in newborn intensive care. And your March for Babies funds paid for 40 current and six new research grants to help understand and prevent premature birth.

2. Cost: There is no cost to join us for the walk on May 1st. You do not need to donate or fundraise to participate. If money is tight right now, show your support by coming out and walking with us! If you want to make a nominal contribution, March of Dimes considers a "paid" walker (covers their costs) to be anyone who contributes or raises $10 or more.

3. Location: Team Squeaker will be participating in the St. Paul walk at the same great location (Phalen Park) as last year! (http://www.marchforbabies.org/search/MapFrame.asp?WeId=12661)

4. Food: March of Dimes will be providing some food for the walkers, and we'll be hosting a potluck-style lunch for Team Squeaker walkers after the event!

5. Swag: March of Dimes provides t-shirts ($200), sweatshirts/Twins tickets ($1000) and other incentives to top fundraisers. Bryce will also be handing out tokens of appreciation to Team Squeaker supporters who raise or donate $50 or more.

6. Weather: The walk is a week later this year, so hopefully we won't be subjected to the cool temperatures and stiff winds of last year!

7. A Great Cause: Most importantly, we walk to honor Bryce, Chloe and all of the other children/angels who didn't even get to experience life before they had to fight to keep it. I'm not a fan of fundraising or being the center of attention, but if my efforts keep even one baby out of the NICU, it's worth it. I hope you agree.


Sign up or donate today! : http://www.marchforbabies.org/bryceandchloe

Laugh, cry, or cheer?

I ought to have learned to expect the unexpected from Bryce by now, but when I heard the urgent plea to "come quick and look at Bryce", I never would have guessed that I'd find my 18-month-old son administering his own nebulizer treatment.





Walk? Pretty darn good. Talk? Not yet. Keep food off the floor while eating? Not a chance. Sit still and breathe steroids through a mask for 3 minutes? No problem.

He never ceases to amaze.

Major Drama in Preemie-land

Not with Bryce, thankfully -- our little squeaker is doing fantastic. We enjoyed a healthy spell from mid-February to mid-March, and when he did catch a cold near the end of March he weathered it better than Logan! He's got nearly a full mouth of teeth and a good appetite to go with them. His speech has regressed over the past six weeks to the point where we rarely get more than a whine or a cry these days, but considering how well he's doing in all other areas (including receptive language), we're confident that he'll talk when he's ready. Finally, we're gearing up for the 2011 March for Babies on May 1st : if you'd like to enjoy a walk in the park for a great cause, please join us!

The drama that I'm referring to centers around a little shot known as 17P. This drug, which is provided to women with a history of premature labor, has helped many carry subsequent babies to term. The shot, which must be given weekly from about 17 weeks onward, was available from many "compounding pharmacies" at a cost of about $10 per shot.

In swoops KV Pharmaceuticals. With the support of the FDA and the March of Dimes, KV Pharmaceuticals won the right to become the exclusive provider of 17P, which they rebranded Makena. Why? To ensure a "standard concentration" of all 17P. As soon as their exclusive rights were announced, KV Pharmaceuticals promptly sent cease and desist notices to all other manufacturers and announced that they would be raising the price to $1500 per shot. No, that is not a typo -- $1500 per shot.

Naturally, the community of preemie parents has been in an uproar. The increase in price will inevitably make it much more difficult to get insurers to pay for the drug, because a treatment that once cost $200, and had the potential to prevent the average $50,000 cost of premature birth, now costs $30,000. Even those insurers that will still cover it will be forced to pay an outrageous premium for the privilege of filling the coffers of KV Pharmaceuticals.

The March of Dimes response was tepid at first, but thanks in no small part to some heartfelt and thoughtful appeals from other preemie parents (e.g, here), I'm somewhat mollified to see that the March of Dimes terminated their relationship with KV Pharmaceuticals (a million $+ sponsor) effective today. Furthermore, I was tickled pink to see that the FDA effectively flipped the bird to KV Pharmaceuticals when they announced on Wednesday that they have no intention of enforcing the exclusivity rights of KV Pharmaceuticals.

Score one for the good guys.

UPDATE: Makena hits the mainstream news.

My First Word

"Mama?" No. He does say "Ma ma ma ma", and perhaps it's wishful thinking, but it seems to me that he does it more often when Mama is in the room. However, he has never used "Mama" to address or call for Christie. "Dada?" Ditto.

Bryce's first word is rather ironic, given all that he faced coming into this world, but when he uses it, I hear not only concern, but also his conviction that with a little bit of willpower (and some help from Mom and Dad), this too can be surmounted. When Bryce says "uh-oh", with heavy emphasis on both syllables, the message that's conveyed is, "Hmm, a problem. I can fix this!"

Perhaps some of our readers are thinking, "Uh-oh? Is that really a word?" I can assure you that it is in the dictionary, and Bryce consistently uses it in an appropriate context. Dropped his cup or bib on the floor? "Uh-oh!" Electronic talking monkey quiet as a stone? "Uh-oh!" In the latter case he even pointed at the battery door on the monkey's foot, then walked over to the desk and pointed at the shelf that holds the screwdriver.

We're still eager for that first "Mama" and "Dada", but after months spent worrying about the long-term effects of "bleeding in the brain" and "insufficient oxygen being delivered to the brain", the word uh-oh is music to our ears.

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.