A Twin Story

Terrific Two!

2011-07-04T12:28:00.005-05:00

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

2011-06-21T00:01:00.004-05:00

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!

2011-04-16T09:35:00.001-05:00

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?

2011-04-03T18:52:00.000-05:00

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

2011-04-01T15:54:00.002-05:00

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

2011-02-20T06:59:00.001-06:00

"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

2011-01-16T09:53:00.000-06:00

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

2010-12-22T21:06:00.001-06:00

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'

2010-12-08T18:51:00.004-06:00

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!

2010-11-26T21:25:00.000-06:00

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

2010-11-13T19:09:00.000-06:00

"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!

2010-10-26T21:01:00.000-05:00

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

2010-09-26T15:09:00.000-05:00

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.

From 1.25 lbs to 1.25 years

2010-08-28T11:38:00.000-05:00

Bryce turned 15 months old (actual) on Thursday, and although he's been able to squeeze into his Carters for a little more than "just one year", I'm happy to say that he's exceeded all of our expectations during his first year at home.

His seemingly insatiable appetite belies his physique. At 20 lbs, 4 ounces, Bryce is in the 50th percentile ... for an 8-month old. He can eat two slices of pizza for dinner followed by a second dinner of fruits/veggies and baby cereal two hours later, but he hasn't been able to break out of the high teens on the growth charts (for his adjusted age). Thankfully, his growth has been consistent, and that's the most important part.

The little guy is still very vocal, but I don't expect him to talk anytime soon. Currently, "ba" is his favorite consonant sound, "da"'s are rare, and "ma ma" is reserved for when he's really upset. We were thrilled when we discovered that he'll mimic us when we say "ba ba ba", because that indicates that his language skills are progressing, and it's hilarious when he tries to imitate us but forgets to make the sound so he just ends up popping his lips.

Walking, on the other hand, seems like it's right around the corner. Bryce will walk pretty steadily while holding on to one of Mommy or Daddy's hands for fairly long distances, and he's just starting to take one or two faltering steps unassisted (say, from the couch to the ottoman). In general, I'd say his physical development is right on target or possibly even a little beyond his adjusted age.

Of course, there's much more to Bryce than just charts and milestones. He's still an extremely happy baby who brightens all of our lives. He loves being outside, playing in the water, and doing just about anything with his big brother. With the exception of diaper-changing time, which he fights with the ferocity of a cornered animal, Bryce is laid back and easy to care for.

With Fall moving in, we're anxiously anticipating the return of cold & flu season. In fact, Bryce is currently enduring his first cold since May. So far, he's tolerating it well, but we did have to dust off the nebulizer on Wednesday. Fortunately, we found an outstanding nanny to care for Bryce while we're both at work, so his lungs will have another year to grow healthy tissue before he'll be exposed to the germ breeding ground known as daycare.

Based on the dearth of posts, most of Bryce's followers have probably already guessed that (a) our lives are getting busier and (b) Bryce's life has become blessedly ordinary. I'll continue to post updates from time to time, especially if we encounter anything that might be of interest to future preemie parents, but if you don't hear from us for awhile, you can assume that Bryce is thriving and we're enjoying life!

Breaking the silence

2010-08-06T22:20:00.001-05:00

Ba ba ba. Ba ba ba ba ba! Ba ba ba ba!

No, I haven't lost it completely. It's just such a welcome sound that I felt it was worth repeating. On Wednesday, Bryce spontaneously unleashed a stream of consonants, and we've been enjoying his newly discovered vocalizations on a regular basis since then.

Bryce's speech therapist told us to expect these sorts of sounds at around 6 months adjusted, and by 8-9 months adjusted, he was officially "delayed." His pediatrician told us we needn't be concerned, since he was probably just putting all his energy into his excellent progress on physical milestones, but after everything we've seen and heard, "don't worry" is a tall order.

I'm pretty sure I heard a "da da da da" earlier in the day; that first word is just around the corner! ;)

Turning one is oh-so-fun

2010-08-01T17:32:00.001-05:00

Sixty of Bryce's family and friends joined us on Saturday evening for Bryce's first "birthday" and "baptism" celebration. In truth, Bryce is midway between his actual birth date and his adjusted birthday, and he was already baptized in the NICU, but the timing worked well and we wanted everyone to have an opportunity to join us for his special day. Besides, we hardly need an excuse to celebrate our little squeaker.

The man of the hour was all giggles and smiles for nearly the entire day, and his good humor was infectious in spite of the muggy weather. Bryce is our water baby, so we weren't too surprised when he passed on the inflatable moonwalk bouncer, which was towering over our house, in favor of his new pool. In fact, he gave everyone a good laugh when he tried to start the party with a splash by diving headfirst into the baptismal font.

Best of all, he got to have his cake and eat it too. Thanks to all who helped make Bryce's special day a success. We hope you had a great evening!

Busy little bees

2010-07-18T21:05:00.000-05:00

It's hard to believe that it's been three weeks since the last post! Now that our time is no longer monopolized by doctor's appointments, endless debates with the insurance company and mild panic attacks every time Bryce sneezes, we've been slowly reverting to something more closely resembling pre-NICU life. Between the lack of exciting news and a slew of summer activities, I sheepishly confess that the blog hasn't been on my mind lately.

Summer has been good to Bryce. He's up to 19lb., 5oz. at 10 months, and he's doing everything we'd expect from a baby his age. I'd say the most significant new development in the past few weeks is Bryce's increased autonomy and personality. He knows what he wants, he's not afraid to go after it, and if he can't get to it (or you take it away), he'll let you know in a big way! It's fun when he walks (very slowly with a lot of assistance) clear across the yard to give Mommy kisses, but not so fun when he throws a tantrum after we confiscate dangerous or dirty objects that he's decided would make good teethers.

Enjoy your summer -- we are!

June-tastic

2010-06-27T22:13:00.000-05:00

What a difference a year makes! That's true for all babies, of course, but it's hard to believe that the tiny baby who spent every moment of last June on the cusp of life and death is the same baby who's spent this June hitting one milestone after another.

Bryce had his "one year" (nine month, by our count) check-up last week, and I think the pediatrician was as dumbfounded as we are. After a cursory exam, he asked Christie if Bryce could sit unassisted. "Ummm... yeaah," she replied. Before he could move to the next question on the list, Bryce crawled over to Christie, pulled himself to standing, and proceeded to walk while holding on to Christie's fingers. Physical development? A++. (Yes, he climbed up on the step in the picture by himself. He was trying to climb over the gate.)

We're still waiting for Bryce to make his first sound that isn't a cry, a squeak, or a growl, but given how well he's progressing in other areas, no one seems concerned. It's probably imitation at this stage, but he's started waving to the two of us and he'll even give out kisses. Now that he's sitting, crawling and standing, he's perfectly content to spend long stretches of time exploring the world on his own, which has made our lives much easier (assuming we've done a good job of baby-proofing the place he's exploring, that is). Logan and Bryce get along great together, and it's heartwarming to see the two of them playing.

Bryce has started eating a wider variety of table foods, including some meat and even the dreaded dairy (cheddar cheese). So far, we haven't had any problems with allergies, aversions or choking. More importantly, he's been growing like a weed: 18.75 lbs (17th percentile) and 28 inches (32nd percentile) at 9 months adjusted.

The little guy had a follow-up appointment at the ENT a few weeks back, and the doc decided that he will not need surgery for the cleft palate. Better yet, I noticed early last week that he's not wheezing anymore! We're not really sure when it stopped, but I think it's been at least a month, which bodes well for the condition of his lungs/windpipe.

So, it seems that Bryce has officially conquered all of his preemie challenges. My heart quails at the audacity of such a statement, because after all that we've seen, I simply cannot believe that our 24-weeker escaped the NICU with nothing more than a pair of glasses and a few scars. Either he won the micro-preemie lottery, or he really does have an angel on his shoulder. One way or the other, we're grateful for a happy, healthy June.

The Anniversary

2010-06-21T11:00:00.000-05:00

It's funny how a number on a calendar can evoke a torrent of memories which have been oh-so-carefully repressed. I doubt a day has passed in which my daughter has not crossed my mind, but her presence today is almost palpable.

This is the only picture we have of Chloe with her eyes open. It's not a particularly good picture; I hate to look at all the tubes and wires, but the little daisy always makes me smile.

Rest in peace, Princess.

We're back!

2010-06-19T13:35:00.000-05:00

If the two weeks of silence were starting to worry Bryce's fans, let me put your fears to rest: the little guy is doing fantastic. We spent the past week enjoying, and the preceding week preparing for, our first long vacation in close to two years. After a long Memorial Day weekend followed by the past seven days at the lake, everyone except Bryce is a little less pale and a lot more relaxed.

Someone forgot to give Bryce the memo about our week of idleness, because he's been working hard on all sorts of new things. He's crawling on all fours now, spends a lot of time standing, and is starting to figure out cruising. His first tooth (bottom) popped through last Saturday night, and although he was unusually fussy on Sunday, he was cheery as always for the rest of the week in spite of the fact that he cut his second tooth (right next to the first) a few days later. He loved playing with his family both inside and out, and best of all, he hasn't had so much as the sniffles for the entire month.

The only drama of the week occurred during our attempts to visit the Alexandria YMCA, which has a new zero-depth pool. On our first try, we didn't even set foot in the water, as we were asked to shelter in the men's locker room for forty-five minutes due to dangerous tornadoes in the area. The next day was a lot better; both kids loved the pool, but we're a bit concerned about Bryce's apparent lack of a self-preservation gene. When placed in water a few inches deep, he would resolutely crawl towards the deeper end of the pool. When the water reached his shoulders, he didn't stop. When the water reached his chin, he didn't stop. When the water reached his nose, he didn't stop. I'm not sure what would've happened if we'd allowed this to continue, but we're starting to think that maybe our water baby loves the pool a little too much.

Road trip

2010-06-02T22:07:00.000-05:00

Bryce and family spent Memorial Day weekend in paradise!

Ok, maybe I'm overselling it a bit, but it was a lot of fun. We had planned for Logan and I to go fishing up north for quite some time, but Christie decided at the last minute that she wanted to come with too. The car was a little cramped, but Bryce endured four hours on the road with hardly any complaining. We didn't think he was ready for the boat yet, but he had a great time exploring the cabin and the beach. Two days of sun, sand and the serene beauty of the north woods was a welcome (albeit all too short) escape for everyone.

As you can see in the video, Bryce is becoming a lot more mobile. He recently started climbing over short stairs and even pulling himself up to standing. His increased independence has been a blessing as he'll entertain himself for short periods, but we've also reached the stage where we can't even really turn our back for a second, because like most babies, he seems to have a gift for finding the one thing within his reach that shouldn't go in his mouth.

Happy Birthday Bryce & Chloe!

2010-05-26T20:51:00.001-05:00

Songs were sung, cake was eaten, candles were extinguished, gifts were exchanged and tears were shed. We had all the elements of a perfect birthday, but it's hard to think of anything other than that empty chair.

Bryce visited the NICU on Monday to celebrate the anniversary of this portentous day. It was great to see several of the nurses, therapists and social workers who cared for him, and I think they were genuinely astonished and excited to see how well he's doing. "This is the best part of our job," one of the nurses said, and another told us that Bryce's story will bring hope to a lot of families.

Mission accomplished.

Little growler

2010-05-22T14:22:00.003-05:00

Bryce has recently abandoned his trademark squeak for a low-throated growl that reminds me of a dangerous cat on the prowl. It's a fitting sound for this age, because on the prowl he is! He still hasn't mastered the traditional up-on-all-fours crawl, but he can pull himself across the room using just his arms with surprising speed. And of course, everything he discovers goes into his mouth first. The video (below) doesn't really do the growl justice, but you get the idea.

The introduction of table food has been a success so far. He's still eating breads and crackers primarily, but Bryce rarely gags or chokes anymore. Still no sign of the teeth we've been expecting, though I suspect they can't be too far off.

The last week has been quiet -- when Bryce is healthy, everyone is happy. Incredibly, Bryce will be one year old next Wednesday! For those who are wondering if their party invitation was lost in the mail, we're planning to celebrate his adjusted birthday this year. If we wait until September, he'll hopefully be able to enjoy stuffing his face with a bite of birthday cake, and maybe he'll even be able to impress you all with those first tottering steps.

Weight watchers

2010-05-16T13:11:00.001-05:00

After six consecutive sleepless nights, we begged Bryce to give us at least four hours of uninterrupted rest last night. It seems our plea did not fall on deaf ears, because he woke for the first time at 5 this morning, after nearly 8 hours without so much as a whimper. The worst of the cold appears to have passed, and he finished up with the steroids (which were causing his hands to shake piteously) yesterday, so I'm guessing he was as eager for a good's night sleep as we were.

Not long after he was a born, I referred to Bryce as our "pint-sized progeny." One year later, that appellation still has a ring of truth to it. After his first check-up at the NICU clinic, I bragged that Bryce was in the 90th percentile for weight on the micro-preemie charts, and approaching the 50th percentile for his adjusted age on the normal infant charts. However, I've since discovered that the latter claim was based on an erroneous online percentile calculator. After pulling the latest charts from the CDC and running the numbers myself, here's what I found:

In the graph, the horizontal axis lists Bryce's adjusted age (in months), and the vertical axis displays weight (in pounds) and also his percentile on the infant charts. As you can see, while he has been steadily moving up on the charts since month one (with the exception of the last month, which was hopefully a fluke caused by illness), Bryce has never been in any danger of being described as average-sized.

Despite his small size, we're still hopeful that he'll catch up eventually. He's not a great eater, but he hasn't exhibited any of the feeding problems that we've been anxiously anticipating. In fact, he seemed thrilled when we gave him his first taste of table food this morning, but I'll let you be the judge of that:

Perhaps the new big boy food will help him chunk up a bit!

Nasty little germses

2010-05-11T19:51:00.000-05:00

The dreary gray weather seems to have seeped into Bryce's house, where everyone is tired and moody because everyone except yours truly has been sick! Once again, Logan caught the sniffles earlier in the week, and Bryce's symptoms surfaced a few days later. He seemed to be tolerating it well until late Sunday evening, when things rapidly deteriorated. Sunday was a sleepless night for everyone, and by Monday morning, Bryce was listless, refusing to eat, and fighting hard to breathe in spite of albuterol treatments.

Later that morning, the doctor said he definitely needed more than albuterol (oxygen sat 88, resting respiratory rate 70-80), so Bryce was once again on the verge of hospitalization. We opted to keep him at home under close observation (deja vu, anyone?), but this time he was given steroids and an antibiotic which reduces lung inflammation as well. The steroid had slowed his breathing by late Monday, and though he's still quite miserable, we're hopeful that he's dodged the hospital.

At least we can feel good about one thing: Bryce was never ill during our self-imposed quarantine, but has been sick four times since. Perhaps the loneliness and germaphobia of the first six months, when he was most fragile, wasn't for naught.

Sick or no, he's still awful cute (though I must admit, that smile's been virtually absent for the last 48 hours):

Happy Mom's Day

2010-05-09T20:53:00.000-05:00

Dear Bryce,

We had a rough start, to say the least. 108 days in the NICU is pretty high up on the list of every parent's worst dreams. However, when you look back on your incredible journey, I'd like you to know that your Mommy never missed a day. She'd scarcely finished surgery before she insisted that she be wheeled to your side, and when she found out she could hold you, well, "kid in a candy store" is too mild to describe her excitement.

For three months, she never strayed from her dairy-free diet, though all the doctors could promise was that it might help ease the discomfort in your tummy. And after seven months of isolation at home, she was willing to do another seven if it would make your life better.

It's been a long road, Squeaker, but Mommy was there every step of the way.

Happy Mother's Day to all the moms who go the extra mile for their kids.

Expanding horizons

2010-05-06T21:03:00.004-05:00

It's been a big week for Bryce. He discovered the army crawl earlier in the week, and he barely had time to master that before the new glasses arrived! As predicted, his first reaction was to pull them off and stick them in his mouth, but when Christie put them on the second time and stepped back, he looked at her and reached out his hand in bemusement, as if to say "Wait, you're still there?"

I also noticed that he's much more difficult to photograph, because instead of just staring at the flash on the camera, he follows me with his eyes. Holding one of the lenses up to my eyes gave me some appreciation for how the world looks to Bryce without them, and it's amazing what a couple of thin (ok, thick) pieces of polycarbonate can do. Now, how are we going to keep them clean?!

Life, now in high-definition

2010-05-02T08:05:00.001-05:00

In roughly one week's time, Bryce may look a little different to you, but you're going to look a lot different to him. On Friday, we took him to the opthamologist for yet another follow-up. His eyes are structurally sound, and he did really well with all the tests. However, at -12.0 diopters, Bryce's myopia (nearsightedness) is very severe. If that's Greek to you (as it was for me until I read this Wikipedia article), the doctor explained that he can only see "normally" to a distance of roughly a foot, and everything beyond a few feet is extremely blurry. The optometrist who helped us order his glasses was actually excited because she feels that it will have a huge impact on how Bryce perceives the world. Hopefully he'll still be the happy, laid back baby we all know and love.

The good news is that as far as eye problems go, this is one of the better ones to have. It's correctable with glasses, and Bryce can wear contacts if he prefers when he's a bit older. Also, the doctor told us that Lasik surgery would be effective once his eyes have finished maturing (around age 21).

The other big news is that Bryce is no longer a Swaddler! For the past eleven months, Bryce has been wearing Pampers Swaddlers, starting with the mind-bogglingly tiny micro-preemie diapers that are only available in Level III NICUs, then working his way up through Preemie, Newborn, Size 1 and Size 2. As of today, he is officially a Size 3 "Cruiser", and believe me, he is working hard to live up to that name. I'm no occupational therapist, but I'd be surprised if he's not crawling before his actual 1-yr birthday. It's been a long road, but our micro-preemie is growing up. :)

Thank you, Team Squeaker 2010!

2010-04-26T21:35:00.001-05:00

Neither the damp nor a stiff north wind was enough to deter the thirty-six stalwarts of Team Squeaker! Weather aside, our first March for Babies was a huge success. Bryce, who rode in the vanguard with big brother Logan, snoozed almost all the way around Lake Phalen, but he had nothing but smiles for his family and friends when we got back to the pavilion. Best of all, we raised $2645 for March of Dimes!

Thank you from the bottom of my heart to everyone who made this a special day for Bryce and Chloe. Whether you braved the cold to walk with us or supported our cause through fundraising and generous personal donations, you are a valued member of Team Squeaker. We hope you can all join us again for an encore performance in April 2011!

More pictures to follow. If you'd like a copy of the full-resolution digital team photo, just shoot me an e-mail.

In the homestretch

2010-04-21T23:07:00.005-05:00

Only four more days until Bryce's first March for Babies! Thank you from the bottom of my heart to everyone who has supported Team Squeaker and the March of Dimes with your generous donations.

They say it takes a village to raise a child. Well, it takes a lot more than just a village to turn this micropreemie:

into this bubbly baby boy:

In the first picture, Bryce is two and a half weeks old. It was the first time in his life that Christie and I were allowed to "hold" him, which meant we could cup our hands around his head and feet for a few minutes. As you can see, I could still fit nearly his entire body in the palms of my hands (and I have relatively small hands).

Eleven months later, you'd be hard-pressed to tell him apart from other babies the same (adjusted) age. Without a doubt, it's the amazing folks in the NICU who deserve credit for this outcome. However, the March of Dimes has played a big role in supporting NICU medicine behind the scenes. During his first month of life, Bryce had serious respiratory issues. Without treatments like artificial surfactant and nitrous oxide therapy, which were developed using research funds provided by the March of Dimes, it's very unlikely that he would have survived.

Furthermore, the March of Dimes is a great champion for prematurity awareness and prevention. Did you know that a baby born at 23, 24, or 25 weeks gestation could survive? Do you realize how many invasive and painful operations these babies must endure? Were you aware of the fantastic sacrifices parents make to provide a good life for children who are disabled due to their early arrival? More pragmatically, do you realize how much money is spent (often your tax money) to provide care for children who are born too soon? The March of Dimes works tirelessly to promote awareness of the issues associated with prematurity, and they also sponsor educational programs that teach future parents about easy steps they can take to lessen the risk of premature birth.

So, if you've already donated to our walk in honor of Bryce and Chloe, thanks again. And if you haven't, do you think you could spare a buck? Or maybe five? Your contribution could make a world of difference to a little guy like Bryce. Help us take the newborn (neonate) out of the NICU.

Missing this smile

2010-04-17T09:26:00.001-05:00

Bryce's happy moments have been few and far between during the past couple days. He picked up a cold (stuffy nose, cough, fever) from his big brother, and it turns out that the nebulizer is not a panacea. The poor kid's been straining mightily against some discomfort for the past two nights, so all three of us are bleary-eyed and short-tempered.

On Thursday the doc said that he should start feeling better after 48 hours, so hopefully he'll be at the top of his game for next weekend's big event.

BREAKING NEWS UPDATE: This just in from the pediatrician's office -- a double ear infection! This villain is well-known around these parts, and we're confident that the good sheriff Amoxicillin will run 'em out of town before long.

Bad habits

2010-04-11T12:50:00.003-05:00

I suppose I should be happy that he's interested in books, but if I could pick only one habit for Bryce to learn from his Mommy, reading romance novels would be near the bottom of the list.

In her defense, Christie only reads them because she "needs something to read in the middle of the night that requires absolutely no brainpower." No offense, Ms. Mallery.

The faces of Bryce

2010-04-10T12:42:00.007-05:00

Face #1: Concerned
This one is usually preceded by a dropped toy or a parent leaving his field of vision, and is usually followed by a hearty wail.

Face #2: Sleepy
Yes, he does sleep with his eyes open sometimes. Weird. Bryce is not a great sleeper. His nighttime schedule is probably typical for his adjusted age -- a mix of good (one long 5-6 hour stretch) and bad (up every two hours) nights -- but his naps during the day are short and infrequent.

Face #3: Naughty
Sticking his tongue out at Mom and Dad is a new favorite of Bryce's. Currently, we're enjoying the "plant-'em-and-leave-'em" stage, since Bryce can sit unassisted and entertain himself with his toys, but isn't quite mobile yet. However, given that he's been rolling onto his stomach and making swimming motions in an attempt to reach toys that are just out of his grasp, it won't be long before he'll be sticking that tongue out as he crawls across the room to engage in mischief.

Face #4: Excited
The only thing more exciting than a giant blue ball is playing catch with your brother with the same ball. As you can see from his drenched shirt, Bryce is still a drool factory, and those bottom teeth have been "a few days from popping through" for about three months.

Face #5: Snarky?
I dunno.. this one is priceless.

Face #6: Happy
I'm probably starting to sound like a broken record, but I'm constantly amazed by what an easygoing baby Bryce has become. He almost always has a smile for visitors, and rarely fusses unless he's hungry or tired. His bout with bronchiolitis slowed him a little in his race to the top of the growth charts, but at 16.5 lbs, he's still hefty for a a seven-month-old ex-24-weeker. He eats a variety of baby cereals, fruits and veggies, and seems to be right on track developmentally. Our only mild concern is that he has only made a handful consonant sounds -- a few 'ba's and two 'ma's -- in his entire life. However, I'm guessing that's just over-anxious preemie parents looking for problems.

Only two weeks until the March for Babies, and three weeks until the new baby glasses!

Oh, the places you'll go

2010-04-04T07:32:00.000-05:00

The park. The coffee shop. The grocery store. Three family Easter celebrations. For Bryce, a whole new world of weird and wonderful places has opened up! We're trying to start slowly and won't let our guard down completely, of course, but listening to Bryce giggle as the swing moves back and forth is like that first glass of water after a ten mile run.

Happy Easter!

Ain't I cute?

2010-03-28T16:30:00.001-05:00

No coughing, no wheezing, but plenty of heartwarming smiles! Bryce sits completely unassisted now, and has been filling the Spring air with a constant stream of various vowel sounds. Best of all, we're planning to finally get the little guy out of the house for Easter! New beginnings indeed.

Merrily marching along

2010-03-21T20:15:00.000-05:00

Naught but happy news to cap off a quiet weekend. Bryce has more or less quit coughing, and we've only been using the nebulizer once a day. He's still wheezing more heavily than normal, but has been acting like the bubbly baby boy we know and love.

On Thursday, Bryce had his first follow-up with the urologist, and I'm pleased to report that his kidneys are growing and his ureteral reflux is no longer a concern. So, he's off the amoxicillin, which was the last pharmaceutical vestige of his NICU days. When we finish up with the neb, Bryce will be drug-free!

The urologist said, "Now you can treat him like a normal baby." Amazingly, it's kind of starting to feel that way. Scary.

A half year at home

2010-03-17T21:51:00.000-05:00

With all the excitement of the past few days, I almost forgot to post Bryce's quarterly update! Depending on who you ask (he came home on September 11th, so I think his "adjusted" birth date is 9/11; Christie prefers to use his more auspicious original due date of 9/15), Bryce hit the half year mark either last Thursday or last Monday. As promised, I'll post a quick overview of his progress to date.

Before I dive into that, I imagine that our devoted readers are wondering how he's doing with his bronchiolitis. Bryce was back in the pediatrician's office for a check-up on Monday afternoon, and the news was encouraging. His lungs sound less congested, his breathing has slowed and his O2 sats are up to 93-94. He still has bad spells, especially if we wait too long between nebulizer treatments, and the doc says we could need the neb for up to six weeks, but we don't expect to be rushing over to the ER.

On to the report!

Feeding/Growth: Bryce is still the micro-preemie growth champ! To be honest, I can't tell you exactly how big he is, because we've quit with the nightly weigh-ins, but it's somewhere in the range of 16.5-17 lbs. The infant growth calculator says that for his adjusted age, he's rapidly closing in on the 50th percentile. Not too shabby for a kid who started off the charts. We recently weaned him off the high-calorie Elecare formula, so he's been getting all his nutrition from Mama's milk, rice cereal, and homemade veggie puree (avocado, sweet potato, carrots, and squash). He's a bit choosy with regard to food texture (won't eat that Gerber stuff), but he's generally enthusiastic about eating solids.

Development: Bryce is right on track for his adjusted age. He picks up toys that interest him, gets mad when he loses them, and will play happily in his exersaucer for up to an hour. He can sit unassisted for a couple minutes, or tens of minutes with a Boppy behind him. He makes several sounds, and uses some consistently to express different emotions (e.g., the "I'm super excited!!" squeak and the "I'm frustrated" whine). As far as personality goes, Bryce is a very mild-mannered baby. He has a big smile for just about everyone, and especially enjoys peek-a-boo with Daddy, dancing with Mommy and just about anything with Logan. At this point, we've observed nothing that would indicate any sort of developmental delay.

Ears: Yep, he's got 'em. And they work, too. In all seriousness, we think Bryce's hearing is just fine. You can holler "Hello, Bryce!" from the other end of the house and his face will light up with a smile. We were concerned that his cleft palate was affecting his hearing, but the cleft (which was almost certainly caused by the ventilator tube) is healing over all on its own.

Eyes: Bryce can see very well as long as the object is near and the light is good, but it's becoming increasingly clear that he didn't make it through retinopathy and laser surgery completely unscathed. He'll react to changes in our expressions when he's four or five feet distant, but doesn't seem to be able to make out our faces from six feet away. If the light is low, we're not sure he can see at all. One evening, we lost power in the house and had only a small portable lantern to see by. Bryce acted terrified and cried inconsolably even when our faces were inches apart and the lantern was right alongside. I'm not sure how well a baby is supposed to be able to see at this age, but the opthamologist said that his vision is bad enough that he'll need baby glasses, which are currently set to arrive in late-April.

Lungs: Even when he's well, Bryce works much harder than a typical baby to breathe, and he wheezes audibly whenever he's active. We've been told that Bryce has Chronic Lung Disease (CLD); however, his blood oxygen saturation has always been very good when he's healthy (99-100%, vs. 93-95% for typical CLD babies)and we recently learned that his wheezing is due to a damaged windpipe (tracheomalacia), rather than damaged lungs. We're cautiously optimistic that there isn't too much scar tissue in his lungs, but we (unfortunately) now know for sure that even a mild respiratory infection can make life difficult for Bryce.

All said, it's hard to believe that he's doing this well. We certainly didn't expect such a positive outcome, but we're very grateful that he's an ex-micro-preemie star!

Me and my neb

2010-03-14T10:46:00.004-05:00

Bryce seems to be on the mend. The coughing fits are occurring much less frequently, and for three hours following each nebulizer treatment he seems almost like normal. Convincing Bryce to sit still for ten minutes while we gas him is a challenge, but it sure beats the alternatives of sitting in the hospital or watching helplessly as your kid coughs until he starts to turn blue. Ahh, the wonders of technology.

March madness

2010-03-13T13:40:00.000-06:00

The first two weeks of March have been mostly crazy good, though we spent the morning running around like chickens sans heads due to Bryce's worst illness since he left the NICU.

I'll start with some good news. This:

has been driving Christie to tears for close to a thousand hours over the past nine months, and I'm happy to say that we've finally bid it adieu. For those who haven't had the pleasure of being milked by a mechanical pump for 30 minutes between 2 and 12 times a day, it might be hard to understand how frustrating it is to sit on the couch with two plastic cups attached to your chest while your infant screams and your preschooler crawls all over you. In truth, I don't fully appreciate the depth of her hatred for the Medela Symphony myself, but I suspect much of it is rooted in the early months spent waking up 3-4 times a night to "feed" a machine.

Thankfully, Bryce has done so well with his eating and growth (a fact which we attribute, in part, to the milk produced by all that pumping) that we've finally weaned him off the Elecare. With the exception of his solids, he gets all his milk straight from the source now, which is a big win for everyone. Our little champ, who turned six months old (corrected) on Thursday, is up to 16.5 lbs. and continues to exceed expectations in nearly every way.

Unfortunately, we replaced one machine with another. This:

is probably a familiar sight to anyone with asthma. Bryce doesn't have asthma (as far as we know), but we are now the proud owners of a nebulizer, because he is suffering from a "RSV-like" illness that just about landed him in the hospital. Earlier in the week, Logan came down with his second (very mild) cold of the season, and Bryce started to exhibit symptoms yesterday. Early this morning, it was clear that the cold had settled into Bryce's chest, and he was scaring everyone with one coughing spell after another and severe wheezing. Being the good-natured kid that he is, he had nothing but smiles for Mom and Dad in spite of his suffering, but Bryce's pediatrician felt it would be best if we brought him into the office.

The doc said that his lungs sound clear (no pneumonia), his RSV test was negative and he doesn't seem distraught. However, he's working far too hard to breathe (65-75 breaths per minute), his airways are clogged with mucus (bronchiolitis) and his blood oxygen saturation was borderline hospital-admissible (88%). So, he offered us the choice of admission to Children's or nebulizer treatments and careful observation at home. With some trepidation, I opted for the latter, but after the nurse helped me give him his first albuterol treatment, Bryce was like an entirely different baby. In the past three hours, he's only coughed twice and he's breathing much easier. Thus, we're cautiously optimistic that this happy guy will be able to avoid another weekend in the ER.

UPDATE: At 3.5 hours, the coughing is back with a vengeance (he's due for treatments every four hours). That albuterol stuff really works!

Look what I can do!

2010-03-07T21:20:00.000-06:00

His proprioception has improved a lot in the past week or so. Provided that Bryce is sitting on a hard surface, he'll frequently recover on his own when he loses his balance.

Bryce is still liking this, too:

In fact, we're in the middle of our third attempt at weaning off the Elecare. Three's the charm, right?

The end is nigh

2010-03-02T21:30:00.002-06:00

While the title may lead you to believe that I'm about to don some sandwich boards, head downtown and start haranguing passers-by, today actually marks a return to saner times for the Sonneks. Bryce had an appointment with the pediatrician today (shocking, I know); officially, it was his "nine month" well-baby visit, since no one at the insurance company can understand the concept of adjusted age (and that's probably the nicest thing I can say about them). Anyhow, when posed with the micro-preemie parent's version of "Are we there yet?" for the umpteenth time, Bryce's pediatrician shocked and delighted Christie when he said, "Yes, yes you are." So, come the end of March, the littlest member of the family will have official medical sanction to start exploring the world outside these walls. In four weeks, we're free!

Bryce is still doing fairly well with his transition to solid food. He's eating two "meals" a day -- we've been rotating between rice cereal, avocado and prunes, with sweet potato on deck. He generally does well, but he definitely inherited his Mama's sensitivity to food texture. We tried making his rice cereal with water instead of milk once, and as soon as the cereal hit his tongue he started gagging and retching. Nevertheless, he's still doing better than we expected. Plus, the pediatrician informed us that he has not one, not two, but six teeth that are ready to pop through! Two on the bottom, which should be making an appearance "any day", and four on the top that won't be long behind.

Finally, Bryce treated us to his first sound on Sunday afternoon: "ba." He said it four or five times, but hasn't started doing it consistently yet. Given how much time he spends pursing his lips and spitting, it's not too surprising that he decided to start here. Perhaps he'll "B" ready to impress all of you with his burgeoning vocabulary when that special day in April rolls around.

March for Babies 2010

2010-02-27T10:03:00.011-06:00

Team Squeaker will be at Lake Phalen in St. Paul on Sunday, April 25th for the first annual 'Walk for Bryce and Chloe' (officially, the March for Babies). If you are interested in joining or supporting our team, please read on. If not, skip to the bottom for a little peek-a-boo fun.

It is very unlikely that Bryce would be here today without artificial surfactant, a substance that supports premature lungs, which was developed with research funds provided by the March of Dimes. Bryce also benefited from MoD-supported research into Nitric Oxide therapy.

The March of Dimes has invested nearly $2 million dollars into research at the University of Minnesota and the Mayo Clinic designed to prevent and treat birth defects, prematurity and conditions associated with very low birth weight. Finally, the March of Dimes provides funding for various groups that support families during their child(ren)'s NICU hospitalization.

Please join Team Squeaker on April 25th as we walk to honor Bryce and Chloe. Weather permitting, the little squeaker himself will be joining us as we celebrate the twins' lives. Also, please consider supporting the March of Dimes through a donation -- every dime counts! To join our team or make a donation, please click on Bryce's 'March for Babies' badge in the sidebar. Your support is greatly appreciated, and we hope to see you on the 25th!

----- Peek-A-Boo ------

When Mommy tries to play peek-a-boo with Bryce, he has a tendency to just stare at her blankly. But when Daddy does it, well, see for yourself.

Perhaps I should be concerned that the mere sight of my face elicits gales of laughter.

Bryce's first report card

2010-02-23T21:41:00.003-06:00

We received a report from Bryce's appointment at the NICU follow-up clinic today. A few excerpts:

"Regarding neurodevelopment - he has made nice progress over the last several months - he is rolling over, reaches for objects and grasps them."

"On the IHDP Growth Curve for very low birth weight premature boys, his weight was at the 75th percentile, his height was between the 75th and 95th percentile, and his head circumference was between the 75th and 95th percentile."

"His heart had regular rate and rhythm with no murmur appreciated."

"His back is straight. His hips are without clicks or clunks. He moves all extremities equally and has normal tone in his upper and lower extremities."

"His automatic reactions ... were all age appropriate. He was able to track visually within all planes and turn to sounds and voice. His receptive and expressive language were also within normal limits for age."

"His fine motor skills were age appropriate.."

"Overall, we are delighted with Bryce's growth and developmental progress."

Sounds like all A's to me!

Fused palate

2010-02-21T09:22:00.000-06:00

I'm not sure if that's the technical term for a cleft palate that is closing without medical intervention, but according to Bryce's ENT, that's the direction things are moving in. When Bryce's cleft was first discovered, the neonatologist speculated that it was caused by the breathing tube rubbing against a developing palate, as opposed to a genetic abnormality. They didn't tell us this at the time, but it seems logical to conclude that if Bryce's cleft was caused by the tube, then his palate ought to resume developing normally once the tube is removed. On Thursday, Bryce's ENT said that the cleft is definitely shrinking, which means future surgery for Bryce has become an 'if' rather than a 'when.'

As long as we're on the topic of mouths, Bryce certainly is not averse to using his to eat solid food. The boy who started two weeks ago with a few tentative swallows of rice cereal now eagerly kicks his feet and opens his mouth as soon as he spies the first spoonful of his nightly snack. He'll gulp down both rice cereal and avocado, and he's sleeping a lot better on solids. However, it has significantly slowed his digestion, and we're both sensitive to GI issues, so we've been very cautious about increasing his volumes.

Finally, Christie has been gradually re-introducing dairy to her diet over the past month, and Bryce hasn't had any problems, despite the fact that she's been eating all the cheese pizza and ice cream that her heart desires. Given his history, we won't be switching Bryce to a dairy-based milk fortifier any time soon, but the fact that he can tolerate it secondhand makes life a lot easier for everyone.

That's my bunny

2010-02-14T21:44:00.001-06:00

Content no longer with the routines of baby life, Bryce has recently become fascinated with those colorful plastic things that clutter virtually every child's home -- toys. And when I say fascinated, I don't mean the occasional swat at the rattle being proffered by Mom and Dad. This kid is more than willing to cover some ground to satisfy his toy craving, which is pretty impressive given that he can neither crawl nor walk.

This evening, he was lying on a blanket in the living room (you can see it in the first picture above). He seemed to be having a good time, so Christie and I decided to just let him be. Not long after, we were astounded to discover that he'd worked his way all the way over to the baseball toy. America's pastime only held his interest for a few minutes before he kicked, wiggled and scooted over to the motherlode of "Made in China" -- the green toy bucket (picture #2, below). He batted at it for a while before crying out with the baby equivalent of "Mommy, Daddy, help please!"

Bryce is passionate about more than just getting his hands on toys; he gets pretty fiesty about them leaving his hands, too. Neither a bottle nor a pacifier is enough to quell the fierce protest that will ensue if you take the green bunny (picture #3) from him before he's tired of gnawing on it. He's also taken a liking to the exersaucer (picture #4), though he's barely tall enough for his toes to brush the floor. After the past few months, a quarter hour of independent play every now and then is a welcome change of pace.

One things for sure -- this kid's got no shortage of personality these days.

Soon to be sportin' some spectacles

2010-02-09T20:32:00.002-06:00

Bryce's pediatric opthamologist told us at his first appointment last September that he'd need glasses someday, but we didn't think that day would come so soon. We learned at his check-up today that his myopia (near-sightedness) is pretty severe, and the doc suggested that we should get Bryce some baby glasses to ensure that it doesn't hinder his development. So, our little trooper is currently scheduled to be fitted with a pair of stylin' new spectacles on the last day of April.

The fact that he can see as well as he does is a blessing given how severe his ROP was, but we're still bumming a little about the thought of covering up those bright eyes. Good thing he's got that heartwarming smile to fall back on.

For those who are curious, Christie found a great site with pictures of babies in glasses: http://babieswithglasses.org.

A few 'T' words

2010-02-08T21:49:00.002-06:00

Tracheomalacia: weakness and floppiness of the walls of the windpipe (trachea). Bryce's pediatrician confirmed today that his wheezing is a symptom of a damaged trachea, not damaged lungs. After reviewing the list of symptoms, there's no doubt in my mind that this is the right diagnosis. In practice, it doesn't change much. He still has some degree of chronic lung disease, and babies with tracheomalacia are also especially sensitive to respiratory infections and at risk for aspiration-induced pneumonia. In both cases, the treatment is the same: wait until he outgrows it. However, and this is a big however, babies typically outgrow tracheomalacia at 18-24 months old, as opposed to 7-8 years for chronic lung disease. Wheezing until 2011 is a big improvement over wheezing until 2016!

Torticollis: tightness of neck muscles which causes the head to tilt to one side. This is the condition that the occupational therapist identified at Bryce's NICU follow-up, and the pediatrician confirmed this one as well. Bryce doesn't care for the stretches or the new focus on tummy time, but it sounds like there's a good chance that this will be enough to cure the problem.

Tentative: unsettled in mind or opinion. Bryce's reaction to his first taste of rice cereal! Most of it came right back out, but we think he may have taken a couple small swallows. He definitely didn't choke or throw up, and we couldn't ask for more than that.

Winter weary

2010-02-07T06:49:00.005-06:00

Bryce didn't have any trouble vanquishing his first virus, and I'd say it vexed us much more than it did him. Now that he's over the cold, he's back to sleeping for at least one 4-5 hour stretch. However, his endearing nighttime squeaking, which lead us to nickname him "Little Squeaker", is now being supplemented with hour-long bouts of squirming, screaming and general agitation just before he goes down for the night. I know that a recurring period of extreme fussiness is common amongst babies, and Logan's unhappy hour was also unfortunately scheduled (during dinner), but Bryce's meltdowns are especially ill-timed. It's tough to summon the patience and energy required to pace around the house with an inconsolable infant at 10pm. Hopefully, Bryce is just empathizing with the winter weariness that we're all feeling after months cooped up at home.

Now that I'm done whining, there really isn't much news to share. In fact, Bryce's regular followers may have noticed that the time between posts has been growing. Partly, this is due to a spate of recent projects, but mostly it's the fact that life feels pretty normal. Sure, he may be one of the cutest babies you'll ever meet (IMHO), but as far as five-month-olds go, he's fairly unremarkable. After 2009, a few boring months (or years) would be fantastic by us, but it does mean that one of my primary motives for blogging has ebbed to the point of non-existence. Multiple weekly blog posts are no longer necessary to keep Bryce's family and friends apprised of his prematurity-related medical conditions, because he has very few such conditions left!

I will, however, continue to blog when there is interesting news (or pictures!) to share, and I will definitely post periodic updates on Bryce's progress. Throughout this experience, reading about the trials and triumphs of other micro-preemies has helped carry us through some dark times, and their stories continue to provide us with validation, reassurance and more than a few laughs. Kudos to those who've gone before us, and we'll do our best to pay it forward.

So far, so good

2010-01-30T14:18:00.000-06:00

Although the constant wheezing is like nails on a chalkboard for a pair of anxious parents, Bryce is clearly not in too much distress (see video -- turn up your volume if you want to know what I mean by "wheezing"). He slept WAY better than Logan did on his first night with the cold, and Logan seems to be on the mend after only three days. I think it's safe to say this is not the dreaded RSV.

Weak as it may be, this bug gets around. I woke up with a sore throat and mild congestion this morning, and I think Christie is only a few hours behind. So, it seems that we'll be staying at home to keep the germs in, rather than out, for the next few days.

Oh, and in case anyone is wondering, the OT wasn't kidding about favoring his right side. Getting him to lay on his left is nearly impossible and feels more like baby torture than good parenting. Helmets are cool, right? (just kidding)

Pesky little critters

2010-01-29T23:12:00.002-06:00

Well, it's official: Bryce is sick. It all started late on Wednesday, when Logan's hourly screaming bouts kept the entire family up most of the night. Sometimes, I'll get up with him once during the night, and twice is not unheard of, but seven times for me and twice for Christie is definitely a record. It didn't take long for us to discover the problem -- on Thursday morning, Logan came downstairs and announced, "There's something in Logan's nose!"

Thirty-six hours later, we find ourselves enduring the dreaded sound of our respiratorily challenged son's piteous baby coughs. After all that we've been told about Bryce's lungs, I am not at all comfortable listening to him hack away; fortunately, he had his follow-up appointment at the NICU clinic this afternoon, so we know that his lungs are clear and his O2 saturation is 100%. Christie and I are feeling more than a little guilty since we just loosened our visitor restrictions less than two weeks ago, but I suppose we should be thankful that he's remained healthy this long. Hopefully, it's just a cold.

The good news is that the follow-up appointment went great! At the NICU clinic, they have special growth charts for very-low birth weight kids (those born weighing < 2 lbs). Today, Bryce is 14.4 lbs. and 25.75" long, which puts him in the 90th percentile for height, weight and head size! Since we know preemies (especially micro-preemies) are typically small, it's great to hear that he's leading the pack. More importantly, the doctors said that his lungs sound really good, and suggested that it might be temporary damage to his windpipe (caused by intubation) rather than damaged lungs that cause his occasional wheezing.

Bryce was also introduced to the fantastic NICU occupational therapist, who quickly discovered two important issues with his development. Due to his early arrival, Bryce learned to breathe with his shoulders scrunched up, which causes him to use only the top lobes of his lungs. She demonstrated that if she pushes gently on his shoulders to encourage him to relax them, he gets really mad. So, we now have a number of exercises that we can do to help him to loosen up his shoulders, which will hopefully lead to less labored breathing in the future.

Second, Christie pointed out a few weeks ago that Bryce's head is not symmetric: it's visibly flatter on one side. I shrugged it off, but ever since then, it has been bothering me too. Well, it turns out this is quite common in preemies; Bryce learned to favor lying on one side, and since he spent more time lying on a developing skull than most babies, his head is becoming misshapen. It might sound a little silly, but apparently his ears can become misaligned if it gets bad enough, which can lead to serious balance issues. Fortunately, the OT caught it at this stage, because if it progresses much further, they might have to put Bryce in a padded helmet for months to reshape the skull. Based on where he's at now, she said that if we're diligent about encouraging him to lie on his left side, we should be able to avoid that fate.

Illness aside, everyone agreed that he looks great, so hopefully those little white blood cells are kicking into high gear and he'll be all smiles again soon.

Remarkable

2010-01-26T21:20:00.001-06:00

May 26, 2009: Bryce is thrust into a world he is unprepared to survive in. His underdeveloped, immature lungs can't supply his body with the oxygen it needs. His blood pressure is critically low, endangering his brain and limbs. Even if he knew how to suck or swallow, his GI system is incapable of digesting anything we would think of as food. He spends his days enclosed in a high humidity, temperature-controlled plastic box because he can't regulate his own body temperature. He is suddenly under assault from hordes of bacteria and viruses, and his premature immune system can't mount an effective defense. The future is grim.

September 26, 2009: Bryce is at home with his family. He is attached to an apnea monitor 'round the clock, and it beeps regularly due to bradycardia (low heart rate) episodes. Feeding is a trial: he chokes several times during each meal, and he hasn't been gaining weight since he left the NICU. At 6.25 pounds, he's off-the-charts small, even for his adjusted age. Bryce's doctors, not to mention his poor parents, are still seriously concerned that he may be blind, deaf and/or have significant brain damage. He's on half a dozen different medications and sees at least two specialists each week. Fear of illness and subsequent re-hospitalization have forced the entire family into pseudo-quarantine. The future is uncertain.

January 26, 2010: Bryce is a happy, healthy and fairly unremarkable baby. The monitors and medications are a thing of the past. He can see and hear, and proves it every day when he smiles, laughs, coos and plays with his family. He can roll over, reach for toys, and even sit or stand with limited assistance. At 14.25 pounds, Bryce is rapidly approaching average size for his adjusted age, and he meets or exceeds nearly every developmental milestone. Doctors and therapists are incredulous when reminded that this boy was born 16 weeks too soon, and his parents' biggest worry is that it's too good to be true. After eight months, Bryce's aunts, uncles and grandparents have finally been allowed to hold him. The future is bright.

-----

Yes, I have painted a rosy picture, but I do think that the right word for Bryce's outcome so far is "miraculous". Bryce has his big follow-up appointment at the NICU clinic on Friday, and we're anxiously hoping the real experts will share our optimism. 'Til then, we'll enjoy our blissful ignorance of any bumps in the road ahead.

Jubilant January

2010-01-20T21:10:00.000-06:00

We've had nary a moment to spare in the past week, but it's been the good kind of busy - Minnesota Swarm, Sesame Street Live, an indoor track meet, a birthday dinner and some home improvements. You know, the kind of things that normal people do in their free time.

With the exception of a sudden regression to the sleeping habits of early September (i.e., no Zzz's for Mommy and Daddy -- teething?), Bryce is still on track to be the next extreme prematurity poster child. Provided that Photoshop can remove all the drool, that is.

Fantastic four

2010-01-13T20:55:00.001-06:00

The days of three quarter pound per week weight gain appear to have drawn to a close, but that's probably not a bad thing - at that rate, he would've been 37 lbs. at a year! Even at a mere half ounce per day, Bryce is still moving up on the growth charts. For his adjusted age of four months, he's in the 25th percentile for weight (13.6 lbs), and he's finally on the charts for height -- 5th percentile (23.75")! Of course, the numbers aren't important, but the fact that he's exceeding the expected growth rates for a baby his age is great news.

The real purpose of Bryce's visit to the pediatrician yesterday was yet another round of the insanely expensive ($3000/mo) drug Synagis, which is intended to help prevent RSV. However, the doctor gave Bryce a quick check-up as long as we were there and pronounced him fit as a fiddle.

The big news of the appointment, though, means much more to us than it does to our little squeaker. We asked Bryce's doctor if he thought it would be safe for him to interact more with his family, and we didn't exactly get the green light, but even a "proceed with caution" is better than the effective quarantine we've maintained until now. Apparently RSV is rampant this season, and it hasn't peaked yet, so we're still limiting visitors to healthy, vaccinated adults in Bryce's immediate family (grandparents, aunts, and uncles), but that's one step closer to the day we can remove the bubble wrap and treat him like a normal baby.

That's not all, though. The doc said that at this age, Bryce's digestive system should have matured enough that he can tolerate small amounts of cow's milk protein. So, Logan and I hit Cub Foods on our way home from the appointment, and Christie enjoyed her first Neapolitan ice cream cone since August!

Yet another step towards the old "normal." The prevailing wisdom is that babies born this early never entirely "catch up", but I'd say we're definitely narrowing the gap.

Big strides for little Bryce

2010-01-09T15:45:00.000-06:00

Like the new faces who've been crowding the YMCA, Bryce is eager to impress in 2010, so he's been showing off all sorts of new tricks.

First, Bryce has been working on his core strength. Whether it be sitting or standing, he's been spending a lot more time off the floor. He can sit in the tripod position (hunched over with both hands on the floor) without assistance, and he can even stand unsupported for several seconds as long as he has something to hang on to (see pic).

He's also been practicing his hand-eye coordination. Last week, we were delighted and relieved when Bryce started reaching for toys and stuffing them in his mouth. Now, one of his favorite activities when he's on his play mat is to find and munch on his stuffed whale toy.

As seen in earlier videos, Bryce continues to work on his communication skills. He's up to at least three distinct sounds, and he frequently carries on "conversations" (back and forth cooing) with Christie or I. Plus, he consistently laughs at our funny faces and during baby games.

Finally, Bryce is already thinking about expanding his diet in 2010. I doubt we'll be starting solids for a couple months, but the copious volumes of drool and constant hand munching strongly suggest to us that he's teething. The speech therapist confirmed our suspicions, so it's just a matter of time until he's sporting some pearly whites in that goofy grin.

Most of the "resolutionaries" will have abandoned the gym long before the snow melts. Considering all the challenges he's overcome so far, I'm confident that Bryce's resolve will long outlast theirs, and we're excited to finally introduce him to the world that he fought so hard to be a part of.

You might be a micro-preemie parent if..

2010-01-06T20:45:00.001-06:00

1. Trigrams (IVH, NEC, ROP, ..) cause you to break into a cold sweat.
2. Your lifetime tab for medical services has two commas in it.
3. You can convert from grams to ounces in your head.
4. You have at least one hospital in your speed dial.
5. You appreciate the complexity of suck, swallow, breathe.
6. Guests have to scrub-in before they enter your house.
7. You think artificial surfactant is the best thing since sliced bread.
8. The insurance company hates you, and the feeling is mutual.
9. You throw a party for each new fat roll.
10. You can spell periventricular leukomalacia, and you know what it means!
11. Your child saw more specialists in the first year than you'll see in your life.
12. You know how to interpret an arterial blood gas.
13. You've been sorely tempted to lean on the scale during well-baby check-ups.
14. You're deeply aware that life is a gift, not a burden or entitlement.
15. You're sick of roller coasters. Bring on the lazy river!

Have one of your own? Add it in the comments! :)

Music to our ears

2010-01-03T16:47:00.003-06:00

I hardly need to say anything today; Bryce is doing a pretty good job all by himself.

A strange feeling

2009-12-30T16:34:00.001-06:00

Lately, I've rediscovered a feeling that has been absent from my life for the past fifteen months. It certainly isn't boredom, but it is something akin; for lack of a better word, I'll call it "relaxed". Relaxed is something that you feel when there are no immediate crises to be dealt with: no deadlines at work, no emergencies at home, and most importantly, no children straddling the line that separates life and death. It took a little getting used to, but it's kind of nice to have an hour at the end of the day when there is nothing that requires my immediate attention.

If you hadn't guessed by now, Bryce is doing great. He's an ounce shy of 13 lbs., and continues to delight the whole family with his burgeoning personality. He rolls over in both directions (tummy time rarely lasts more than a few seconds for this kid), and usually has one or two periods a day during which he coos at Mommy or Daddy for several minutes. We have a few check-ups on the calendar in January, but the general consensus in our house is that Bryce has become not only a relatively easy baby to care for, but a seemingly normal one as well.

He does still get winded very easily, which is something that we're eager to ask about at our first NICU follow-up appointment next month. Also, we've tried to wean him to two bottles of fortified milk per day, rather than his usual three, on two separate 72-hour trial runs, but he was unusually cranky and didn't gain any weight both times, so we're pretty sure he still needs the extra calories. With those minor exceptions, Bryce at 3.5 months could be easily mistaken for Logan at 3.5 months in terms of temperament, development and looks!

The entire family is eagerly anticipating the dawn of a new year which will almost certainly be an improvement on the last. As John Hambrock put it, 2009 was a dud (click the link to read the comic, which is especially appropriate since Logan was born in 2006).

St. Nicu

2009-12-26T09:07:00.002-06:00

This is great. I'm not sure who to credit it to -- just saw it floating round the Net.

======

Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;

A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Merry Christmas!

2009-12-24T16:25:00.002-06:00

Christmas tree? Check.
Presents? Check.
Stockings? Check.
Christmas dinner? Check.
Plenty of snow (with more on the way)? Check.

The only thing we're missing is you! Christmas won't be the same without all our family and friends, but we're confident that a small sacrifice this year will pay big dividends down the road. We hope that you all have a joyful and relaxing holiday; you'll be in our thoughts!

Bryce is doing terrific. He's delighted us a few more times with his laughter, and does his best to share his opinions with us (see video above). He's also really taken a liking to his big brother. Bryce practically demands to sit in his Bumbo whenever he's awake so that he can watch Logan play with his toys, which I'd argue is further evidence of good vision.

His recovery from surgery was quicker and easier than we'd imagined possible. Other than flat weight gain for the week, he hasn't shown any sign that he was in the slightest distress since we brought him home from the hospital. We took the dressings off his incisions this morning, and they look great; you can barely see the scar from the inguinal hernia (above his right leg), and his belly button appears to be healing up nicely too. With a little bit of luck, we won't have to go back to the hospital until he gets his cleft palate fixed next September.

I don't think Santa usually brings presents to thirty-year-olds, but we'd be willing to trade all the rest for a pair of healthy boys in 2010!

Twenty-six

2009-12-21T22:14:00.001-06:00

As life whirled around us, our hearts fluttering erratically, her tiny eyes bored into mine. "Don't cry, Daddy," they said. "This is how angels are made."

Twenty-six words. Twenty-six days. Neither were sufficient, but life's that way sometimes. Six months have passed since the day we lost our daughter. It seems a strange thing to commemorate, yet as painful as it is, it was the only moment we were given. Life moves on, Princess, but we won't forget.

A fan of the Black Eyed Peas

2009-12-19T19:46:00.000-06:00

Turn up your speakers! The video is a bit bouncy, and the best part is over in the first five seconds, but the sound of Bryce laughing is like ambrosia for my soul.

Ahh, to be young again

2009-12-17T21:45:00.002-06:00

I picked up Christie and Bryce from the hospital this morning, and unless you pull up his shirt, you wouldn't even know that he had surgery. This evening, I was changing his diaper and I was shocked to discover that the incision has already faded to a light pink. It takes me longer to recover from a hangnail!

Live from the operating room

2009-12-16T05:06:00.007-06:00

LAST UPDATE, 8PM: Our baby boy is on the mend. He briefly woke up at 4:30 pm and guzzled an entire bottle before promptly falling back asleep. About two hours later, we were greeted with the typical wide eyes and goofy grin, so we knew he was going to be just fine. The doctor stopped by at 7:30 and said he's more or less clear to go, but they couldn't start the discharge process before 10:30 (because the protocol says so). Christie was already falling asleep, so we decided the two of them will stay the night. They've already weaned Bryce to infant Tylenol, and he seems perfectly happy; the doc says he should be "back to normal" by tomorrow. That kid is made of tough stuff.

UPDATE, 2PM: Bryce is still extremely lethargic, and he's as enthusiastic about eating as Christie is about sleeping in a bed that is literally eighteen inches wide. The nurse actually called the anesthesiologist, because they expected him to be more responsive by now and he's been arching his back in a way that suggests he's not terribly comfortable. The doc was surprised that he could feel anything after the spinal, but he prescribed a shot of morphine, and now Bryce's out cold. His sluggishness is nothing to worry about, but it does mean we won't be leaving this broom closet before 10PM this evening. After looking at the mean incision just below his tummy, I'm willing to cut the kid a little slack.

Luckily, Bryce slept until minutes before the surgery

X marks the spot -- you can't be too careful

Reassuring Mom and Dad with some pre-surgery smiles

Happy to be back in Mommy's arms

Morphine dreams

UPDATE, 11AM: Our little champ is out of surgery and back in Mama's arms! The surgery lasted about an hour, and he spent roughly the same amount of time in recovery. Christie and I were vacillating about whether to go through with the surgery right up to the minute that the OR nurse gently pried him from Christie's protective embrace, so we were somewhat relieved when the surgeon told us afterward that we definitely made the right decision. He said that Bryce had a "huge hernia" on the right side, and that he could "fit his thumb through it."

The anesthesiologist told us that Bryce would be receiving a spinal block (kind of like an epidural) for pain, and that he might need a little bit of narcotic as well. Given his history of apnea, Christie and I were squirming anxiously in our waiting room seats alongside a dozen other antsy parents. I've never thought of my wife as a particularly swift person, but when the nurse came 'round the corner with Bryce in tow, I think she may have crossed the intervening space faster than Usain Bolt.

The drugs must be doing their job, because Bryce is still sleeping soundly, despite the fact that he hasn't eaten since 2AM. Thankfully, he is breathing on his own (no vent!), and his vitals are great. The doctor said that they want to keep him for observation for at least 12 hours, but he did so well that they might release us later tonight. We're currently cooling our heels in recovery room limbo until a room becomes available; I'll post some pictures when we get settled later in the day.

ORIGINAL, 5AM: Well, more likely the OR waiting room, but I will try to post updates throughout the day. My first question for the doctor is: "Who decides that all children's surgeries should happen at 7AM?!"

Three months later

2009-12-14T20:56:00.001-06:00

The first few weeks were a little rocky, but Bryce has risen to the challenge of life outside the NICU, and we are thrilled with how well he's been doing. For those who are keeping score at home, here's the quarterly rundown.

Feeding/Growth: Bryce has continued to thrive on the breastmilk and Elecare diet. He's doubled his weight since he came home (12.1 lbs today!), and his length has been increasing steadily (22" long). He's still on a mix of nursing/bottling (typically 4/3), and he almost always finishes an entire 4 oz. bottle of 24-calorie-per-ounce fortified breastmilk. His feeding problems are minor and steadily diminishing, though he still aspirates (chokes) an average of 1-2 times with every meal. He's still quite small for his adjusted age, but if you put him in a lineup with other three-month-olds, I don't think most people would finger him as a preemie.

Neurological: We think that Bryce is maturing, but since he can't communicate, gauging his progress is more art than science. The doctors ask us questions like "Does he recognize Mom and Dad?" or "Does he reach for things?", and we typically answer yes. However, as I lamented in an earlier post, it's hard to know whether those smiles for Daddy are actually a consequence of my presence, or simply a little bit of gas. That being said, he is more engaged with the world around him now. He's using his hands a lot more, he seems more excited when people interact with him, and I swear that he even laughed at me a few nights ago! Also, his pediatrician and therapists assure us that he's on the right track, so we're cautiously optimistic that any developmental delays will be on the mild end of the spectrum.

Ears: I'm not really sure what to think about Bryce's ears. There is no doubt that he can hear, but he failed three hearing tests before he finally passed one, so either the tests are about as reliable as Logan's electronic toys, or we're going to eventually learn that his hearing is functional but not quite perfect. We know that the cleft palate, which will eventually be repaired, can affect hearing, so we're hopeful that he'll outgrow any current problems.

Eyes: Yet another "wait and see." He has at least decent vision, which he regularly uses to charm Mommy, Daddy and even extended family by mirroring their smiles. He will track interesting toys in all directions, and even turns his head to follow especially exciting moving objects (big brother Logan, usually). We have noticed a few peculiarities with his eyes: one pupil is noticeably smaller than the other (just like Daddy!), and the corners of his eyes are very dark (consequence of the laser surgery?). More news on this early in the new year.

Lungs: Bryce's respiratory system has quickly risen to the top of the list of things that keep me awake at night, although in truth he's probably doing better than most babies who have their premature lungs ravaged by mechanical ventilation for six weeks. It's the reason why we'll be spending the holidays at home for the first time ever, and also the reason why I'm hesitant to take Logan out in public. I'm pretty sure that everyone who reads this blog knows that Bryce has been diagnosed with Chronic Lung Disease (also known as Bronchopulmonary Dysplasia), but it wasn't until the past few weeks that the damage became apparent to a medical layman such as myself. Recently, Bryce has become a lot more active: he enjoys sitting up and even standing. However, when he exerts himself, it doesn't take long before he starts panting and wheezing in a way that reminds me of an overweight smoker at the top of a long flight of stairs. The doctor listened to him this morning and said that we shouldn't worry as long as these episodes don't last several minutes, but I'm still a little concerned about what the future will hold, and I'm downright terrified of what might happen if he should catch pneumonia or RSV. If you're interested, the mother of a darling 3-yr-old micro-preemie recently wrote a fabulous piece on life with CLD/BPD; I highly recommend it.

He passed his pre-op appointment today with flying colors, so Bryce will be having surgery to repair his inguinal and umbilical hernias at the crack of dawn on Wednesday. Christie and I are both more than a little anxious, but we're trying hard to remind ourselves that he's conquered much more at a much younger age, and that we're entrusting him to some very capable hands. If you have any positive energy to spare, please keep Bryce in your thoughts and prayers on the 16th!

Feeling feisty

2009-12-10T20:58:00.006-06:00

Apparently, Bryce and Ralph (Logan's teddy bear) are not friends.

In his own words

2009-12-08T21:00:00.000-06:00

Hi, this is Bryce. You'll have to pardon my Mommy and Daddy; they get a little emotional sometimes. Don't worry, I know what needs to get done, and I'm a real 'git r done' kind of guy. All those fancy pants doctors are always running around preaching doom and gloom, scaring my parents with whoppers like "Bryce can't hear!", and "Bryce can't see!", and even "Bryce's brain isn't growing!" HAH! We'll see about that.

Did you know that I weigh 11.6 pounds today? All that growing makes a guy mighty hungry, so I've been drinking 4 ounces of milk every 3 hours! I inherited a sensitive tummy from my Mommy, and sometimes I get a little cranky from all the rumbling and grumbling that goes on in there. On really bad days, I spit up a little bit of milk, and it goes through a hole in the top of my mouth and comes out my nose! That is not fun.

My Mommy is really nice. She rocks me when I can't sleep, and even gives me baby massages! We play lots of games; one of my favorites is hitting balls in the Bumbo. I can't quite sit up straight yet, and holding my head up tires me out, but I love to watch those balls roll around!

I like my Daddy too. He helps me stand up so that I can see everything that's going on around me. My legs are strong enough to support me, but I need Daddy's help to balance. Sometimes, I start breathing really hard when Daddy is playing with me, and he gets a little worried, but I don't think he should fret. Standing up is a lot of work for such a little guy!

I recently learned a fun new game. Mommy & Daddy think I've "discovered my hands." Pssht. As if I didn't know they were there. When Daddy's feeding me, I like to knock the bottle out of his hands when he's not paying attention. He doesn't think it's funny, but I think it's hilarious! One time, when Mommy was watching, I bopped myself right in the forehead with my hand, just to get a laugh out of her!

You know what I don't like? Cold wipes. My parents have this perfectly good wipe warmer in my bedroom, but every time I make a mess in my pants, they reach for those disposable wipe packages. It's bad enough that I have to suffer the indignity of someone else wiping my bum; you'd think they could at least use the warm wipes! It's almost like they're too lazy to walk up the stairs. What's up with that?

I have a big surgery coming up soon. On Wednesday the 16th, I'll be having my hernias repaired at Children's Hospital. I'm a little scared that they're going to put that nasty tube down my throat again, but the doctor says they're going to take real good care of me. I get to stay overnight with Mommy in my very own room at the hospital! I wonder if they'll have a TV with that Cars movie my brother loves so much. I like to sneak a peek at that one when Mommy and Daddy think I'm sleeping in the swing. SHHH! Don't tell.

Bye Bye!

Was that a coo or a squeak?

2009-12-05T19:27:00.009-06:00

When our older son Logan was born, Christie and I started religiously reading "Your Baby's First Year - week by week", and when the first year came to an end, we moved on to the next book in the series. Each week, we spent part of an evening learning about the behavior that would be expected from a "normal" child of that age, then set about convincing ourselves that our son fit into that category. Any time we discovered that, for instance, most 14-month-olds know six words, whereas Logan only knew five, we'd spend the next few weeks working to correct the shortcoming that we almost always attributed to our negligent parenting. Around his second birthday, I must've subconsciously arrived at the realization that this was a manifestation of ridiculous over-parenting, because I can't remember the last time I picked up one of those books, but I'm completely convinced that Logan couldn't possibly be a more normal 3-year-old.

Now that I'm an "experienced" parent, you'd think that I could relax and enjoy the mostly happy days of the past two months with Bryce. In spite of his unthinkably early arrival and all that it entailed, he seems to be doing great now. All of the doctors keep telling us that he looks awesome and that he's right on target for his adjusted age. However, I still find myself beset with anxiety; I really want to believe that he's going to beat the odds, but I keep waiting for the other shoe to drop. Did he really follow that toy with his eyes, or was it a fluke? Was he reaching for the ball, or just flailing his arms around? Was that a coo, or just a squeak?

In this case, the Internet is as much curse as blessing. I've had the opportunity to connect with dozens of other micro-preemie parents, and though this has been a great boon for my sanity, it also means that I've heard all too many stories about seemingly normal infancies followed by significant feeding and developmental issues in toddlerhood. The inevitably of some prematurity-related challenges seems to be a universal belief amongst those who've been down this road; as one parent so eloquently put it, "one simply can’t be exposed to extrauterine life at that gestation and not be marked for life from it."

So, every time we're told that he's passed another test or hit another milestone, I find myself wondering, if not this, then... what?

Name that baby

2009-12-03T20:48:00.003-06:00

Three photos of Logan and three photos of Bryce -- I wonder if the facial recognition feature in iPhoto could tell them apart. :)

The promise of the future

2009-11-29T07:10:00.003-06:00

The linked article contains some interesting information about Bryce's lung condition and some promising research into its prevention and treatment. I was bummed to hear CLD/BPD baby lungs described as the "lungs of a 50-year-old smoker", but "healing juice" that "regenerates dead cells" sounds pretty darn good.

Research suggests stem cells could help lung development in preemies

Living the dream

2009-11-28T21:56:00.000-06:00

Ok, maybe it's not the typical baby dream, but it's definitely the micro-preemie parent dream! Bryce had a great six-month check-up on Friday; his official measurements are:

Weight: 10.8 lbs. (10-25% for his adjusted age of 2.5 months)
Length: 21.25" (still < 3%)
Head size: 40 cm (25-50%)

As you can see, he's still exceeding expectations with respect to weight gain and head size, but he probably won't be an all-star center for the Timberwolves. Bryce's pediatrician stepped through a chart with different developmental milestones, and in five of the six areas (all but social skills), he's behaving like a 3-4 month old baby. The doctor also said that he sees a lot of babies, and he's convinced that Bryce is a winner both physiologically and neurologically.

We did have a bit of drama (of course), but the doctor is convinced that it's going to turn out to be a false alarm. When Bryce's pediatrician reviewed his head ultrasound from a couple weeks back, he noticed that the relative amount of fluid between his brain and his skull has increased slightly. This could be an early sign that his brain isn't growing properly, but given how well he's doing developmentally, it's much more likely a sign that Bryce is subjected to way too many tests.

I'll end on a high note -- for the first time since he came home, I can say that we have *no* doctor appointments next week! This is one dream I hope we never wake up from.

Giving thanks

2009-11-26T12:48:00.008-06:00

Bryce

Chloe

Happy six-month birthday Bryce and Chloe! On this day in May, you made your debut in this world in spectacular fashion. When we met, you couldn't greet us with so much as a whimper because of the breathing tube that was hastily forced down your throat, and your tiny hands were hardly the size of my thumbnail. I had read that a preemie's head can be as small as a lemon, and I remember standing at your isolettes thinking, "A lemon? God, I wish their heads were the size of a lemon. They're closer to the size of a golf ball." We were surrounded by doctors, none of whom could tell us whether you'd survive the next hour, and we knew that, even in the best case, we'd spend the next eight years worrying about the long-term effects of your prematurity. And yet, none of that mattered. We were irrevocably bonded to you at 11:30 AM on that fine spring day, and your Mommy and I both agreed that we were going to do everything in our power to provide you with a chance to enjoy that which we've come to appreciate so deeply: life. We've never regretted that decision for even one minute, and I know that we never will. Love you, Squeaker. Love you, Princess.

It is oddly fitting that the twins' half-year birthday happened to fall on Thanksgiving, because it is an event which has redefined how I experience life in ways that I am profoundly grateful for. Yes, 2009 has been a year of great heartache and anxiety for our family. Do I wish things would've turned out differently? Absolutely. However, I think it sometimes takes an event of this magnitude to strip away all the noise and reveal the fundamental joys of human existence. It certainly has given me a much deeper appreciation for many aspects of my life, and I'm especially grateful for the people in my life who give each day meaning.

Today, I'd like to extend a special thanks to a few of those who've touched our lives in unexpected or profound ways during the past six months. This list is by no means exhaustive, so I hope no one will feel overlooked. We're very grateful for each and every card, e-mail, visit, gift and other kindness, no matter how great or small.

Thank you, Paul, for not giving up on our little girl, even after the writing was on the wall. Those fifteen minutes were priceless.

Thank you, Sally, for always going the extra mile for Bryce.

Thank you, to those special NICU nurses, for patiently fielding calls from two very anxious parents and for caring about (as well as for) our little ones.

Thank you, Chuck, for always being there with a smile and a prayer.

Thank you, Rachel, for shielding us from that mountain of paperwork and those insufferable insurance people.

Thank you, Poozie, for spending enough time at our house to qualify as a voter in Anoka county. Logan is blessed to have a Nana who loves him so much.

Thank you, Logan's babysitting crew, for providing a loving and stable home for him while we were away.

Thank you, Sarah V., for your dedication to Logan. You were much more than just a babysitter to him.

Thank you, ARCC, for honoring Chloe with a charity book drive. We were deeply touched by the gesture.

Thank you, Ryan @ Mueller-Bies, for handling a delicate matter so admirably. You're a credit to your profession.

Thank you, Grandma Marlene, for ensuring that our fridge is always well stocked with delicious homemade food. When I offer Logan Kraft Mac N' Cheese, he now says "No, Gamma Mac N' Cheese".

Thank you, Grandpa Duane, for taking such an active interest in learning about the twins and their care.

Thank you, Grandma S., for your kind words of wisdom and support.

Thank you, Logan, for being the heart of this family.

Thank you, Chloe, for brightening our lives with your presence, then and now.

Thank you, Bryce, for tenaciously defying the odds. Every time they told us to expect the worst, you showed us that we should never count you out. Keep up the good work.

Happy Thanksgiving!

Sunday fun-day

2009-11-22T10:21:00.015-06:00

Logan's congestion cleared up overnight, and he didn't develop any other obvious symptoms, so the Department of Small Baby Security has downgraded the germ threat level to yellow. Other than that, it's been a pretty quiet weekend; in fact, Logan and I even managed to talk Mommy in to leaving Bryce with us while she took a long overdue break to go to a movie. It might not sound like much, but I'd say that's a strong indicator of how well Bryce's doing.

We only have *one* doctor appointment next week -- woohoo! Enjoy the pics/vids.

Bryce has mixed feelings about saying hi to his friends on the Internet

Bryce LOVES the Playskool Swing N' Score baseball

The Weekly Roundup

2009-11-20T22:28:00.000-06:00

They say life imitates art, and I know medical dramas are all the rage, but I never expected to be living one! Fortunately, the daily ups and downs have been fairly minor lately, and I'd say the week as a whole was more or less a wash.

Bryce is still healthy, but Logan sounds like he's coming down with a cold, and even if we were both home every day, I can't imagine how we're going to be able to keep his germs from spreading throughout the house. Ironically, we're fairly sure he picked it up at the doctor's office; Bryce had an appointment on Wednesday, and Logan was crawling up the walls in a waiting room filled with sick kids. C'est la vie.

Bryce's speech/feeding therapist had some especially encouraging things to say about his development after observing all the smiling and cooing he does when people interact with him. However, his tremendous growth spurt seems to be petering out; after several weeks of gaining an average of 1.5 oz. per day, he's dropped to about 0.5 oz per day this week. That's not terrible, but given our fear of future growth/feeding issues, we liked it a lot better when he was in the right-hand tail of the preemie growth bell curve.

The biggest medical news of the week is that Bryce passed a hearing test in both ears! I guess the old cliche is wrong; for Bryce, the fourth time's the charm. As a consequence, they've decided to cancel his ABR hearing test for the time being, which is especially good because they have to anesthetize infants for the ABR.

Finally, I wanted to let everyone (but especially our preemie parent followers) know about a documentary, called Little Man, which was on Showtime (and is available from Netflix). The movie is about a one pound 25-weeker, named Nicholas, who had an especially turbulent entry into this world. I'm not sure I'd go so far as to say I recommend the movie, but it did evoke smiles and tears from both Christie and I. A great deal of time is dedicated to the ethical and family dilemmas associated with micro-preemies, and I found it hard to get through the first twenty five minutes. Though Nicholas had a longer and tougher NICU stay than Bryce, most of the medicine looked all too familiar. It's definitely not date-night material, as this micro-preemie Mommy doesn't pull any punches, but if you're interested in a realistic documentary of the challenges of NICU life and raising a micro-preemie at home, I'm guessing this movie is one of a kind.

Fight for preemies

2009-11-17T21:49:00.000-06:00

10 pounds today! It might not sound like much, but that's an eight-fold increase over the past six months. How many people do you know who've managed such a feat? Better yet, Bryce seems happy and healthy, he's right on track (developmentally) for a two-month-old and he hasn't been giving his parents too much grief.

The past few days have been very uneventful, but today is Prematurity Awareness Day, so I wanted to make everyone aware that this preemie is doing great! Also, I'd like to dedicate this "fight for preemies" post to the real fighters who spend their days on the front lines for these kids, and to recognize how lucky we are.

It certainly didn't have to be this way. Six months ago today, Christie and I were sitting in a hospital room, still reeling from a dramatic shift in our reality. When you look at Bryce today, it's hard to believe that on May 17th, we were in the process of having frank discussions with doctors about whether they would provide "intensive care" or "hospice care" for our children.

Although we instantly recoiled at the idea of doing anything less than everything we could for Chloe and Bryce, the doctors were right to broach this very sensitive subject. Even the staunchest believer in the sanctity of life must weigh their desire to fight for their child against the likelihood of a positive outcome, and the odds against the twins were disheartening. Based on studies published in top medical journals which tracked micro-preemie outcomes through the first year, I calculated the following statistics for Bryce and Chloe when they were born:

Survival rate: 40%
Survival w/o moderate-severe disability: 10%

It's easy to lose hope when you look at those numbers. Given where we started, there was only a 19% chance that we'd leave the NICU with even one healthy baby. It would've been very easy, perhaps even rational, to write Bryce and Chloe off as a lost cause. And yet, when we decided we were "all in", the folks at UMMC (and subsequently at Children's) fully committed their time and energy to helping our babies for no more remuneration than they'd receive if they adopted a specialty where the success rate is much higher than 40%.

Like that of many micro-preemies, Bryce and Chloe's story has taken many tragic turns; Christie and I still struggle with the loss of our little princess. However, it is also a story of hope and courage. Hope, in the form of two naive and overwrought parents who just wanted to give their children a chance at life, and courage, in the form of everyone who fought to make that dream a reality. I challenge anyone to look at that smiling face and tell me it was a poor decision.

So, I wanted to take this opportunity, once again, to thank all the doctors, nurses, scientists, therapists and others who truly fight for preemies every day. These folks take one look at those statistics, and in spite of the heartache they're almost sure to endure, say "to heck with that -- let's save those babies."

A sigh of relief

2009-11-13T17:04:00.005-06:00

Bryce met with the last of his new specialists today, and I'm pleased to say that in spite of the inauspicious date, we ended the week on a high note. His pediatric pulmonologist (lungs) said that he is doing fantastic, and mostly confirmed what we already knew. Bryce does have Chronic Lung Disease, a scarring of the lung tissue which is practically inevitable in extremely premature babies that need long-term ventilation. However, he's been off oxygen for more than two months, he hasn't had any apnea spells since he left the hospital, and the doc said that his lungs sound great. His CLD is the biggest factor in our fear of respiratory infection, and the pulmonologist advised us to continue to be extremely careful through the end of April (*sigh*), but he's optimistic that Bryce will be one of the kids who'll outgrow this condition. The doctor also said that he no longer needs three of his medications, including the dreaded salts that precipitate most of his choking episodes, so by early next week he'll only be taking the pink stuff all kids love: amoxicillin.

The only bittersweet news of the day is that they're going to take away our security blanket! Despite the inconvenience, Christie and I find a great deal of comfort in knowing that Bryce's apnea monitor will emit a shriek that would wake the dead if he should stop breathing in the wee hours of the night. However, he hasn't had any alarms in three weeks, and none of his alarms to date have been serious, so the pulmonologist said it's time to give it back. He wanted to take it today, but one look at Christie's panic-stricken expression prompted him to give us an additional two weeks to "get used to the idea."

This mildly upsetting new development was swept from our minds shortly thereafter when the pediatrician called with some eagerly anticipated results. Bryce's head ultrasound, which was taken yesterday morning, was completely clean: no brain swelling, no extra fluid on the brain, and no enlarged ventricles! All said, it was a fantastic Friday the 13th for our mighty mite.

Germs: 1, Sonneks: 1

2009-11-11T12:21:00.007-06:00

And we'd be perfectly content to leave it at that. Yesterday was a bit rough, as I did end up with a low-grade fever and some intestinal distress, but all that's left this afternoon is the cough. During the past 48 hours, I've had most of the symptoms of the flu, but it wasn't nearly as bad as I've heard it described. Perhaps I'd built up a partial immunity from the vaccine shot I received a week ago, or maybe it's just a cold. More importantly, it's been nearly three days since I started feeling out of sorts, and no one else in the house is sick yet.

Bryce has been at home with us for exactly two months today, and when you consider that period as a whole, he's doing remarkably well. One of the county nurses came to check up on him yesterday, and he's currently measuring 21.25" long and weighs 9.5 lbs. For his adjusted age of 2 months, he's moved up on the growth charts from the "< 3 percentile" to "5-10 percentile" with respect to his weight. Given his rocky start and how common it is for micro-preemies to have growth/feeding issues, I'd say that's cause to celebrate! His lungs are still clear as a bell, and we've had naught but false alarms on the apnea monitor for at least two weeks.

Some of you may have noticed that I added a little "Fight for Preemies" badge to the blog sidebar. This campaign is sponsored by the March of Dimes as part of Prematurity Awareness Month, and its goal is to raise awareness of the high cost and growing prevalence of premature birth. At first blush, it seems silly to think that blogging about our experience with prematurity can have any meaningful effect on the more general predicament. Also, I felt a bit foolish supporting such a campaign; although premature birth is a problem that has become near and dear to my heart, I recognize that there are many ills in the world (hunger, cancer, heart disease, war, etc) that have a much broader impact on humanity.

However, after further consideration, I realized that unlike these other crises, prematurity wasn't even on my radar until it happened to us. I literally had no idea that preterm birth was as common as it is (50,000 micro-preemies per year in the U.S.), nor that they had the medical technology to save these tiny babies' lives. If, by telling our little miracles' stories, we're able to make others aware of the problem, that sounds like a pretty good first step toward making prematurity a priority on the national agenda. I know I'm biased, but I'm fairly confident that the overwhelming majority of people would agree that it warrants far more attention than some of the "crises" currently being addressed by Congress (steroids in baseball, anyone?).

With that in mind, Christie and I consented to a feature story on our terrific twosome on the website growingyourbaby.com. A fellow micro-preemie parent is a writer for the site, and she asked if she could use Bryce and Chloe's story as one of her Prematurity Awareness Month profile stories. If you're reading this, everything in the article is probably old news, but check it out if you've got a free minute!

Germs: 1, Sonneks: 0

2009-11-09T20:01:00.004-06:00

Despite assiduously following the CDC recommendations, the germs have struck the first blow in the war to keep Bryce healthy. I woke up this morning with a mild sore throat and a tickle in my lungs, which I attributed to the very dry air in our house. By early afternoon, I'd developed an uncomfortable pressure in my lungs that was making it impossible to work, so I went to Walgreens, bought two jumbo packs of face masks and some Halls, then locked myself in our basement. During the past few hours, I've developed a cough that feels like it's tearing my lungs apart, a splitting headache and (worst of all) a gnawing fear that I'm going to be responsible for Bryce's re-hospitalization.

Fortunately, our lower level is a walkout with a bathroom and a futon, so I only really need to head upstairs when I want to eat. Also, our families have already selflessly volunteered to step in for me at home during the next few evenings, so I only feel moderately awful about leaving Christie to deal with the kids alone. Right now, I'm just desperately hoping that no one else has already caught the bug, and that my immune system can squash it in short order.

So far, life is carrying on happy as can be without me. As you can see in the attached video, Bryce is doing so well that he seems to have evoked a bit of sibling rivalry in his big brother. I'm sure it won't be the last time.

Show and tell

2009-11-08T19:38:00.000-06:00

Well, more show than tell. Enjoy!

Raking leaves in the backyard with my big brother

Mommy, Daddy and Me

I've been working on beefing up these cheeks! (9.25 lbs)

Snug as a bug in a rug -- the only way I sleep

Look how strong I am! I can almost sit up with a little help from my Bumbo!

Melting Mommy's Heart

A ray of sunshine

2009-11-05T22:29:00.001-06:00

I sometimes feel like I'm the stormcrow, constantly heralding the arrival of more troubling news. Bryce must have sensed my disquiet, because he put on quite a show for the occupational therapist (OT) today, and I could hardly wait to share the good, and only good, tidings.

After Bryce's trouble at the audiologist on Monday, Christie asked me if I'd ever heard him coo. I pointed out that he squeaks (kind of like a grunt), but I couldn't recall a time that I'd ever heard him coo. She was concerned that Bryce's language skills weren't developing because he couldn't hear, and my answer only intensified her concern. Since then, we've both been anxiously trying to prove to ourselves that he does respond to our voices and the sounds of the world around him.

Thus, I'm pleased (and relieved) to announce that he was cooing up a storm for the OT this morning. He didn't stop there, though. With a little coaxing, he grabbed some toys on his own, brought one up to his mouth and even rolled over twice! I'm also happy to report that sanity prevailed at Logan's H1N1 vaccination appointment this morning, as Christie had no trouble convincing the nurse that she ought to be poked as well.

I regularly try to remind myself that Bryce's journey will be different, that I can't expect that he'll be a typical newborn; really, I can't expect anything. Rather than lamenting the challenges he faces, I should be celebrating every moment that he's here with us, because in a different time or place, that simply wouldn't be the case. In reality, when you're dealing with the fear of illness or disability, it's easy to lose sight of the miracle of his life. Days like today certainly don't hurt. :)

What you don't know can hurt you

2009-11-04T21:12:00.002-06:00

We're starting to develop a bit of a love-hate relationship with the medical profession. Yes, they did save our son's life, and they gave us an opportunity to meet our daughter, for which we are eternally grateful. However, it seems like we can't set foot in any kind of medical facility without learning at least one disconcerting new fact about Bryce. Thus far, most of his challenges are not life threatening, and we've met many amongst our friends and family who've shared comforting stories about overcoming similar challenges, but that's not the point. It's not the hernias, or the reflux, or the cleft palate, or his potential sensory shortcomings or any of the other stuff that kills me: it's the fact that he has to overcome all of them, and that the only reasonable expectation is that the list will continue to grow. It's like death by a thousand little disappointments.

So, on to the new facts of today. Bryce had his appointment with the pediatric opthamologist this morning, and the news gradually progressed from encouragingly good to uncomfortable-feeling-in-the-pit-of-my-stomach scary. First, they checked his vision using a number of simple tests. As expected, he had no trouble tracking toys that light up, but I was pleasantly surprised when he repeatedly followed a striped square embedded within a larger, solid rectangle. This was the first time I've witnessed visual behavior from Bryce that convinced me that he can see more than just light; those little eyes actually work!

Next, they did a test to determine how good his visual acuity is. The doctor said that Bryce is quite near-sighted, and that if he was going to school they would definitely fit him with glasses. However, his vision is good enough that it won't hamper his development as an infant, so no baby glasses for this kid!

It was at this point that the news started taking a turn for the worse. The opthamologist explained to us that Bryce's optic nerves are unusually pale. This could mean that the capillaries (small blood vessels) in the optic nerve haven't fully developed yet, or it could mean that the optic nerve was damaged (or didn't develop correctly) due to his early arrival. Since the optic nerve is essentially the signal wire between the eyes and the brain, you can imagine how a "frayed" optic nerve could cause all kinds of problems.

Finally, we get to the real scary stuff. Our readers may have noticed that Bryce holds his eyes wide open, almost as if he's just been startled, in many of the pictures. What you may not know, however, is that this isn't just a consequence of the camera flash; his eyes are usually like that when he's awake. The opthamologist noticed this behavior, and casually dropped the morning's bombshell: perpetually wide eyes is often a sign of increased intracranial pressure (i.e., brain swelling). As many of you know, we were deeply worried about this due to Bryce's intraventricular hemorrhage; however, his hemorrhage resolved very quickly, and all of his subsequent ultrasounds looked great. Nevertheless, the doctor recommended that we schedule another ultrasound of the ventricles to look for swelling as soon as possible. Never a dull moment in the life of a micro-preemie (nor his emotionally-battered parents).

Thankfully, everyone is still healthy, and I'm busy manufacturing H1N1 antibodies after (finally) scoring a vaccine at the U. I know it's just the placebo effect, but I already feel healthier. :) We managed to get Logan scheduled for vaccination too, but we're still fighting to get Christie classified as "high risk." Though it's barely begun, I've never been so eager for a "season" (cold & flu) to be over with.

Can you hear me now?

2009-11-02T22:20:00.000-06:00

Well, we certainly didn't see that one coming! Today's appointment with the otlaryngologist (also known as Ear-Nose-Throat, or ENT, specialists) was the second in his spate of specialist meet and greets, and we expected it to be so uneventful that I opted to skip this one. The primary purpose of the visit was to evaluate his cleft palate, and though we're occasionally jolted awake by a heart-wrenching wail accompanied by milk dribbling out his nose, Bryce's reflux issues seem to be relatively minor.

You can imagine my surprise when I heard a catch in Christie's voice as she called with the post-appointment report. As predicted, the doctor wasn't concerned with the feeding-related aspects of the cleft palate, especially given how well (just shy of nine pounds!) Bryce has been doing. However, what we didn't know is that there are a number of ear problems which are commonly associated with a cleft palate. I wasn't there to get all the details, but as I understand it a cleft palate can cause (temporary or permanent) hearing loss due to fluid build-up or problems with pressure equalization, and the very fact that he has a cleft palate makes it more likely that he has a congenital defect of the ear, since the two develop at the same time.

The ENT repeated Bryce's newborn hearing exam, and this time he failed in both ears. So, they conducted another test (called the OAE) that measures how well his ear drums respond to sound, and the results were marginal; he didn't completely fail, but it was a D- at best. The doctor recommended that we schedule yet another test, called the ABR, at the hospital, which will allow them to measure his neurological response to sound. As I've said before, we know that he can hear to some degree, but I suppose that the ability to hear a pot dropped on a tile floor doesn't necessarily imply the ability to hear Mama's affectionate whispers. Unfortunately, the ENT warned us that it's unlikely we'll be able to get an appointment for the new test before 2010, so we won't have any more answers for a while.

Typical preemie drama aside, our little man is doing awesome. He's still sleeping for long stretches at night and he's starting to look downright chunky. If we can make it through the remaining appointments without any more curveballs, I'd say things are looking up for the Sonnek family.

Back under the knife

2009-10-29T21:24:00.000-05:00

Though he's sixty times younger than his old man, Bryce will have been on the operating table just as many times in a few short weeks. That's hardly the kind of precociousness I'd hoped for in my children, but I do find some solace in the fact that he's had fewer, and less dangerous, surgeries than your average micro-preemie.

Unlike his previous laser surgery, this time he really will be under the knife. We visited the pediatric urologist at Children's Hospital today, and he recommended that Bryce's inguinal hernia be fixed before the end of the year. It's not an immediate danger, but they almost never close on their own, and it could abruptly become an emergency situation if his bowel gets incarcerated (trapped outside the abdominal wall). As predicted, the surgeon is also going to fix his umbilical hernia as long as he's poking around in there.

The good news is that this surgery is not terribly dangerous. The doctor told us that inguinal hernia repair is an outpatient procedure for most people, but with preemies everything is more complicated. For Bryce, the biggest concerns are anesthesia-induced apnea and infection. At Children's, they mitigate the risk of the former by "employing the best pediatric anesthesiologists in town" and mandating a hospital stay of at least one night following surgery. As far as infection is concerned, they generally don't use surgical knives that have fallen on the floor (unless it has been less than five seconds, of course). ;-P

Someone must've tipped Bryce off about Santa's naughty and nice lists, because he's still doing everything he can to work his way on to the latter. His growth has been incredible (8 lb, 10 oz today), and he's even started smiling at Mommy, Daddy and big brother Logan. His typical night time routine is to eat at 10pm, sleep quietly until 2:30am, eat again, then sleep until 7:30am; what more could a parent of a six-week-old ask for? He really seems to have turned the corner, and you'll hear no complaints from us about that. I still have to be pretty quick with the camera to catch those smiles, but I've included a few of his goofy grins with this post, along with a movie that shows how great his eyes are doing. Enjoy!

Happy days, quiet nights

2009-10-24T21:42:00.002-05:00

Every once in a while, I pause to reflect on some aspect of my life and realize that I'm very content with the status quo. This past week with Bryce has definitely been one of those times. He's healthier than he's ever been and his temperament changed almost overnight from fussy, impossible-to-please little tyrant to happiest baby on the block. For the past few nights, he's slept for 9 hours with only a single feeding break in the middle! I still find myself lying awake at night on occasion, but it's the more easily banished fears of what may come (or ghosts of the past) that keep me up, rather than quandaries of the present. If only we knew how to keep him this happy and healthy. :)

We bid farewell to one specialist this week, but we added two more; I suppose that's progress of a sort. Bryce's retinologist said that his eyes have fully recovered from the laser surgery and that his retinas look "awesome," so our little champ has officially beaten retinopathy of prematurity. She referred us to a pediatric opthamologist, which is one of several big events looming on the horizon. In early November, the opthamologist is going to test how well Bryce can see to determine whether he needs baby glasses. Between now and then, we've got important appointments with a urologist to check on his hernias, a pulmonologist to evaluate his lung condition and an otolaryngologist (ear-nose-throat doctor) to check on his cleft palate. That's three too many opportunities for our peace and harmony to be disturbed by some complication that we're blissfully ignorant of, but if Bryce's luck holds we should be able to cross a few more names off his list of caregivers in two weeks.

Halloween fever

2009-10-21T22:13:00.001-05:00

The Halloween season is in full swing, and the malls aren't the only ones peddling fear. As if the mass hysteria surrounding the economy weren't enough, virtually every media outlet, medical facility and educational institution has been broadcasting regular updates on the H1N1 death toll ticker. Notifying the public about a health threat is certainly a laudable endeavor, but how exactly do I benefit from daily updates on the number of children who have fallen victim to the flu? To make matters worse, the majority of these stories attempt to reassure their readers by pointing out that most of the young victims had "underlying health conditions", as if their loss is somehow less painful due to the fact that life dealt them a rotten hand to begin with. As the father of one of these medically-challenged kids, I can assure you that we harbor the same hopes and dreams for Bryce as we do for our more robust child. My heart goes out to all the parents who've lost a child to this or any other illness, especially those whose grief has been marginalized due to the circumstances of their child's birth.

Fortunately, we don't have any spooky news to report from the Sonnek household. Everyone is healthy, and Bryce continues to exceed expectations. In fact, he's officially outgrown his newborn diapers and outfits, as he cracked the eight pound mark this afternoon, and he's looking better with each passing day! Hopefully, we're done with all of the preemie tricks for a while, and now we can just enjoy the treat (a healthy baby boy) that we've been anxiously awaiting.

The times, they are a changin'

2009-10-18T15:54:00.011-05:00

For the past few days, Christie has been struggling to articulate the reason why she feels Bryce is maturing, but she couldn't quite put her finger on it. I was skeptical earlier in the week, but after spending the weekend at home with him, I've started to notice a number of exciting changes as well. First and foremost, he'll finally sleep without being held constantly. During the day, it's usually only an hour or so, but he's been sleeping soundly for 3 or even 4 hour stretches at night. He still dislikes the crib, but his papasan bouncer chair and swing have quickly become new favorites in the Sonnek household.

Mealtime has become a lot less stressful, too. The hour-long, anxiety-ridden feedings of the past have gradually transitioned into twenty-minute affairs in which choking is the exception rather than the rule. He hit 7 lb., 12 oz. (Logan's birth weight!) this morning, and doesn't seem like he's planning to slow down any time soon. Finally, Bryce is more engaged with the world around him. If he's resting on my lap, he definitely prefers sitting upright, so that he can see what's happening around him, to lying flat, and certain toys consistently arouse his interest.

I've included a short video clip of this morning's Tummy Time below. Not too exciting, but he sure does have a lot of energy for a one-month-old!

Packing on the pounds

2009-10-14T16:20:00.007-05:00

After a few disconcerting days of zero growth, we decided to try bumping up Bryce's fortified milk volumes from 60 ml to 75 ml, and he has responded in a big way! He's roughly seven and a half pounds today, which is an average growth rate of 1.5 ounces/day (nearly a four-fold increase!) over the past five days. His length is up to 19.75", and his head circumference has increased to 36.5 cm. Bryce's pediatrician was very pleased with our burgeoning boy at this afternoon's check-up, and we were equally pleased to hear him described by a doctor as a "very healthy-looking baby."

Of course, it would be very un-preemie-like to have a several-day period with only good news, and the last five days were no exception. On Sunday, Christie was a bit panicked after finding a rather large lump in Bryce's private area. After a few minutes on Google, I decided that Bryce had either the world's largest testicle or an inguinal hernia. Fortunately, the lump didn't seem to be causing him any pain, and the fact that it went away after several hours pretty much ruled out the first theory. When I explained what we'd seen to Bryce's pediatrician, he said that I'd described a textbook case of an inguinal hernia, and suggested that we contact a pediatric urologist sooner rather than later, since this type of hernia rarely resolves without surgical assistance. So, Bryce will likely undergo the second surgery of his life sometime before the end of the year. I'd like to say that I hope it will be his last, but that's so unrealistic that I'll settle for hoping that it is quick and painless.

Bryce in a nutshell

2009-10-10T12:29:00.018-05:00

As of tomorrow, Bryce has been home for an entire month! The past thirty days have been far from easy, but it beats daily trips to the hospital, and we're definitely in a better place now than in mid-September. Our confidence in the hard decisions we made back in May grows with every added ounce, and it keeps getting easier to imagine the day when our lives will no longer be defined by Bryce's prematurity.

Since I know most of you have only been able to follow Bryce's progress through the tidbits I add to the blog, I thought it would be worthwhile (and fun) to post a summary of Bryce's current status. Call it an 'Introduction to Bryce', if you will. :)

Size: Bryce currently weighs 3215 grams, or just over 7 lb., 1 oz. In the past, his length and head circumference have been in line with his weight, but he hasn't been measured since shortly after discharge. One month ago, he weighed almost exactly one pound less, so his average growth rate is slightly less than half of the desired ounce per day. Even for his adjusted age, he's very small -- below the 5th percentile on the growth charts. We're hoping that the Elecare-fortified milk will continue to help with this, but feeding/nutrition is one of Bryce's major challenges.

Eyes: We thought this was going to be Bryce's Achilles heel, but thanks to his outstanding retinologist, Bryce is looking (pun intended) really good. Some of the medical studies that I read back in August suggested that as many as 94% of babies with Bryce's condition end up legally blind, but he appears to have beaten the odds once again. He probably won't be a fighter pilot, since the laser surgery which saved his sight destroyed his peripheral vision, but it sounds like he'll eventually walk, run and possibly even drive down the street unassisted.

Ears: Bryce failed a hearing test in his right ear, and we know that high-frequency ventilators can cause hearing loss, but we also know that these tests are notoriously unreliable. More importantly, there's no doubt that Bryce can hear with at least one of his ears, so we're doing pretty good in this department.

Heart: As far as we know, this baby is solid gold. Other than his PDA, which closed without surgery, Bryce hasn't exhibited any cardiac trouble.

Lungs: Bryce was on a ventilator for the first six weeks of his life, and received oxygen supplementation through a nasal cannula for the next eight weeks, but he has been breathing without any support since late-August. Mechanical ventilation almost always damages the fragile air sacs in extremely premature lungs, resulting in a build-up of scar tissue called Chronic Lung Disease (CLD), which makes breathing more difficult. We've been told that Bryce breathes much faster than your average baby (probably because he gets less oxygen with each breath), but every medical professional who has listened to his lungs has said they sound "crystal clear", which is definitely a good sign. Despite this, the same medical professionals have repeatedly warned us that if Bryce catches the flu, pneumonia, or certain types of colds, we can expect that he'll be re-hospitalized, and that he'll be in real danger of meeting his sister sooner rather than later. If you needed any further proof that I'm not just being dramatic, we recently learned that the insurance company is paying more than $1000/mo for Bryce to get a monthly shot which may protect against a type of cold called RSV, and we all know that insurance providers aren't particularly eager to part with their money for treatment that isn't absolutely necessary. We spend a lot more time dealing with his feeding issues, but respiratory infection causes us the most consternation.

Brain: I tried to save the best for last. Bryce had a grade 2 intra-ventricular hemorrhage when he was born, but it resolved very quickly, and he's passed all of his subsequent tests with flying colors. Bryce's caregivers have been impressed with his reflexes and behaviors, and he seems to be right on track for a one-month old baby. We won't have all the answers until Bryce is at least 8 years old, and it wouldn't be surprising if he has some developmental issues down the road, but so far he's doing great.

Thanks again to everyone who has played a role in our little miracle's fantastic journey. On the day he was born, I watched as the NICU team whisked our baby boy away, and I'm somewhat ashamed to say that my first thought upon seeing him was, "there is no way he's going to leave this operating room." 138 days later, he's sleeping peacefully on my living room floor, and I know we never would have made it through without the support of hundreds of family, friends and even total strangers. So, whether you threaded an ultra-thin IV line into Bryce's tiny arm, or watched over Logan, or picked up our slack at work, or said a prayer for Bryce on Sunday, or any of the myriad other kindnesses that have made this story possible -- thank you. I doubt we'll ever be able to repay you all, but I want you to know that your contribution is deeply appreciated.

For giggles, I posted three pictures below: the first is Bryce at one-month actual age, the next is Bryce at one-month corrected age, and the last is Logan when he was one-month old!

P.S. For those who are wondering, Logan was around 10 lbs. at a month.

Walking a fine line

2009-10-07T12:44:00.002-05:00

Sometimes, "wait, watch and hope for the best" is the most appealing option, and I was relieved to learn that Bryce's pediatrician agrees that this is one of those cases. All of his tests came back clean, and we haven't had any more unwelcome surprises in his diaper. Our own experiments with fortified versus straight breastmilk have clearly demonstrated that he needs the extra calories to grow, so I am very reluctant to tinker with his diet. The doctor concurred that since he's doing so well, it is better to continue with the Elecare in the hope that he'll eventually outgrow his extremely sensitive and immature digestive system. Based on Bryce's reaction to the nearly constant rumbling in his tummy, his indigestion isn't a whole lot of fun, but it's far less dangerous than being six pounds forever.

In other news, Bryce hit another important visual development milestone! Christie has been working very hard to get him to follow objects with his eyes, and on Tuesday evening, he was clearly tracking a little Frosty the Snowman toy. He may have been following the blinking red lights in Frosty's cheeks, rather than the toy itself, but we're pleased as punch either way. We were also cleared to discontinue Bryce's apnea monitor during the day, because he hasn't had any apnea spells since he was discharged, but they want us to continue using it at night for another month due to his occasional reflux/low-heart-rate spells.

I'm actually writing this post from 32,000 feet above somewhere in middle America, and the fact that I'm confident enough in Bryce's health to take a day trip for work speaks volumes about how far we've come. There's still a long road ahead, but at the rate he's been growing during the past week, he'll hit 7 lb., 12 oz. (Logan's birth weight) a lot closer to Halloween than Christmas. Go, twinkie!

Lucky seven

2009-10-04T18:06:00.009-05:00

Little Bryce continues to blossom with the help of our new friend Elecare. He crossed the seven pound mark this morning, and has been doing great all week! He visited the retinologist again on Thursday, and we're pleased to announce that his eyes are both fully mature and "architecturally sound." We'll have to wait a few months before she'll be able to give us some idea about how well they function, but we do know that he tracks light and sees something in mirrors worth staring at. By week's end, we were both feeling a lot less overwhelmed and a lot more optimistic about the future.

Unfortunately, we couldn't get through the weekend without a little bit of drama. Bryce's sharp-eyed followers may have noticed that he has a small umbilical hernia (see the bath picture from 8/23 -- it's the little bubble where his belly button should be). This type of hernia is not unusual for a preemie, and typically it is painless and resolves without treatment. At 10PM last night, while I was changing Bryce's diaper, I noticed that the hernia had taken on a purple hue, and that it was firmer than normal. Christie agreed with my assessment, so we decided to play it safe and called his pediatrician. We were dismayed to learn that Bryce's symptoms were suggestive of a serious condition involving misplaced bowel, which would require immediate attention. The pediatrician advised us to bring him to the ER, so we packed our bags, hopped in the car and headed back to Children's.

Our ER visit turned out to be yet another good news/bad news affair. All of the staff were extremely friendly and well-versed in preemie care protocol, but we felt like we were in a war zone for the ten minutes we spent in the waiting room. I longed for Bryce to be able to take refuge in some sort of private hermetic bubble as I listened to sick kids hacking away while their parents described flu-like symptoms to the admissions nurse. When we were finally moved to a private room, the nurse's well-meaning reminder of how critical it is to keep Bryce healthy didn't help matters. I've never been a germaphobe in the past, and I don't particularly like feeling as if I have to choose between isolating my family from the world and endangering my son's life.

Thankfully, the hernia thing turned out to be a false alarm. However, we did discover that he had blood in his stool again, which means more sleuthing to figure out what caused it. Is it the Elecare? Did Christie accidentally ingest some milk or soy protein? Or is it something else entirely? Little Bryce can't give us the answer, so it seems it's time for Dr. House to rally 'round his apprentices and go back to the whiteboard.

Three cheers for Elecare!

2009-09-30T18:53:00.010-05:00

Bryce's growth has been nearly ideal since we started fortifying his milk. He's up 150 grams (to 6 lb., 12 oz.) over the past five days, and seems much happier. He's a better nurser than bottler, so the first couple days were frustrating, but we eventually discovered that if we use a newborn nipple on his bottles, instead of the preemie nipple we were advised to use, he finishes his bottles in a quarter of the time and doesn't choke any more frequently. So, it seems that the looming specter of re-hospitalization has been banished by a mere 2.5 tsp/day of formula, and I'd say everyone in the Sonnek household is sleeping easier (albeit not enough).

There isn't much else to report, and that's a good thing. I'm back at work, so my time is ridiculously over-committed, but I'll post the latest updates (and pictures!) when life permits.

Eating is supposed to be fun!

2009-09-27T17:03:00.000-05:00

I did my best to remain calm as Bryce's weight remained steady or slowly decreased for most of last week, but when he dropped an entire ounce on Friday, I decided we'd had enough of this "wait-and-see" business. Bryce's home nurse stopped by for our weekly visit in the morning, and during his exam, he noted that Bryce's bowel sounded "too active". This, combined with the nearly constant stream of material coming out of Bryce's backside, led him to suggest that Bryce might have a condition called malabsorption. Basically, this means that Bryce's body is not absorbing enough nutrients from the milk as it passes through his digestive system, resulting in the stagnant growth we'd observed for the past couple weeks.

It was already halfway through the last workday of the week, so I immediately switched to pesky parent mode and started calling every doctor in Bryce's lengthy list of care providers. An hour later, Logan and I were headed to Children's Hospital to pick up a sample can of a special formula called Elecare, which we'll be using to fortify Bryce's milk for the foreseeable future. Elecare is an "elemental" formula, composed of basic amino acids, which is recommended for babies with very sensitive stomachs.

Given the fact that we've only been adding it to half of his feedings for two days, the results have been dramatic. The dirty diaper rate has decreased to a more normal 3-4 per day, and his weight is up 100 grams to 3 kg (6.6 lbs) despite the fact that he's taking in quite a bit less milk. It's too early to declare victory, but we're both feeling good about the change.

The only downside to the new diet is that Elecare tastes terrible. When Bryce came home, feeding was a high-anxiety activity involving choking, shrill alarms and overwrought parents. Over the past two weeks, things had gradually improved to the point where I almost felt comfortable watching TV while he was eating. Now, it seems we're back to square one; as soon as the formula/milk mix touches his tongue, Bryce scrunches his face, starts squirming and stops breathing. Fun. Hopefully he'll get used to the taste, and as he starts packing on the pounds, perhaps we'll be able to add it less frequently.

With the exception of our feeding woes, things are going quite well. Everyone is still healthy, and with respect to being held by Mommy and Daddy, Bryce is happily making up for lost time. Logan loves to share toys with his little brother, and we're all anxiously awaiting the day when Bryce is old enough to reciprocate. Meanwhile, we'll enjoy the good times, and try to make the best of the rest.

"Stop this noise!" -- Logan

2009-09-24T15:04:00.000-05:00

Considering that Bryce spent the first three months of his life confined to an isolette, I'm amazed at what a people person he's become. During the past few days, he's raised an awful racket any time he's not being held. Christie and I have been sleeping with him in the rocking chair, and he's virtually always being held during the day. Personally, I wouldn't be opposed to the idea of one of us sitting on the couch all day, but our toddler feels differently, and eventually I'm going to have to go back to work. I try to tell myself that it's only temporary, but when the scale comes back with 2.93 kg for three days in a row, it's hard to stay positive. I spent some time thinking about this dilemma yesterday, and I thought I'd come up with the perfect solution, but those heartless jerks at the Powerball office didn't draw my numbers. Plan B, which is a baby sling that Christie found online (he's still too small for the Baby Bjorn), seems to be working better (see above).

Got faith?

2009-09-22T11:27:00.001-05:00

Yesterday, Christie and I were introduced to the wonderful world of Anoka County family services. Due to his extremely low birth weight, Bryce is automatically classified as a "disabled" child (boo!), which means that there are a number of free services available to him through the county Early Intervention program (yay!). A couple of program representatives stopped out at the house yesterday and explained that Bryce is eligible for free home visits from a speech therapist, an occupational therapist and a home nurse. Based on his background, they're going to develop a program specifically tailored to address developmental delays Bryce is more likely to encounter. Once again, I was pleased to learn that all these services are available, but didn't care to be reminded that the overwhelming majority of 24-weekers have some sort of developmental problems.

We've settled into a fairly comfortable routine at the Sonnek household. Other than being extremely busy, Christie and I would be quite pleased with the status quo if it weren't for one teensy problem: the smallest member of the family is dead set on staying that way. After four days of nearly flat weight gain, Bryce is up only 3 ounces since his doctor appointment last Tuesday, and he's only gained 7 ounces since September 4th!

Since we received the baby scale, I've been tracking Bryce's daily milk intake. During the past three days, he took in roughly 600 ml (about 20 oz) per day, which is well above the 450 ml/day required by a 3 kg baby. When I presented this data to Bryce's pediatrician today, he agreed that his volumes are more than sufficient. So, he concluded that either Bryce is working too hard to eat (hence burning too many calories), or his digestive system is doing a poor job of absorbing nutrients because it still hasn't fully matured.

We briefly discussed introducing a higher calorie hypoallergenic formula, but the pediatrician said that he believes that keeping him on straight breastmilk is our best bet. He explained that if Bryce had trouble digesting the formula, he might develop gastrointestinal problems such as necrotizing enterocolitis (NEC), which would be far worse than just growing slowly. Then, Bryce's doctor smiled at us and said, "have faith." At this point, I'm not sure how comfortable I am clinging to the wispy thread of faith I have left, but the mere mention of Chloe's arch-nemesis was enough to quell any opposition from me.

So, it seems that Bryce will be one of the few babies who actually gets a lot of use out of his newborn-size outfits. We'll keep plugging away, and hopefully his rate of growth will increase as he matures.

Let's see how far we've come

2009-09-20T09:01:00.000-05:00

When I look back on our first eight days at home as a whole, I feel a lot more optimistic about the weeks to come. Bryce's weekly weight gain of 5 ounces, while a bit short of the desired 7+, certainly isn't cause to sound the alarm. And speaking of alarms, though Bryce has unexpectedly set off his monitor a few times, we have yet to experience anything that warrants a call to the nurses, let alone 911. Perhaps it's just a matter of us adapting to his feeding style, but it seems like he has been waking to eat more consistently, and we're more confident that he can, and will, thrive at home. As Logan likes to say, "Baby Bice going grow big!"

I'd like to thank those of you who shared your own infant reflux experiences with us. Though reflux is very common amongst preemies, it is certainly a problem for many full-term babies as well. In fact, I often find myself wondering how many of Bryce's issues are prematurity-related, and how many are just things that we didn't experience with Logan.

We've been slowly introducing Bryce to the trappings of modern baby life. Thus far, Christie and I have been hesitant to leave him in a swing or bouncer, even though it might help to alleviate some of his irritability. As one of our dear readers correctly pointed out, our NICU experience has made us gun-shy. I'm afraid to let Bryce lie on my chest, let alone in a swing, because I know that something as innocuous as the beating of my heart can interfere with his apnea monitor. Also, we've been conditioned to position him in a way that facilitates breathing and minimizes choking/reflux, and it's hard to stop worrying about those things, even if he is starting to outgrow the need for them. Of course, it doesn't help that well-meaning medical authorities have both chastised us for not treating him like a normal baby and warned us that he may be blown over by the feeblest of sneezes.

I realized yesterday that it's been a while since I've uploaded a video, and I know it's hard to get a good sense of Bryce's personality from pictures alone, so I hope you'll enjoy our latest features (Tummy Time and Mat Play). Also, for the medically curious, you can pretty clearly see Bryce's cleft palate in the photo below (actually, you can only see the groove; the hole is near the front, and requires a flashlight to see).

Things are looking up

2009-09-17T16:17:00.000-05:00

I can't help but preface today's post with a comment about the constant mood swings associated with raising Bryce. I am painfully aware that our daily appraisal of Bryce's future oscillates wildly between hope and despair. In fact, I sometimes choose not to post the latest news because I strongly suspect that the following day will bring a less upsetting, if not downright contradictory, update. Bryce (and ^Chloe^) have toed a fine line between sickness and health from the moment they were born, and often even the most experienced doctors don't know on which side of that line they're going to fall. I'd prefer to spare our family and friends the anguish we're experiencing; however, I do want to convey some sense of what it feels like to be a micro-preemie parent. Despite the fact that I sometimes feel like I'm living in a completely unbelievable reality that even the most die hard soap opera fan would scoff at, I do my best to tell it how it is. That being said, I do think that Bryce is going to outgrow his prematurity, and I like to think that someday his story will provide a little hope to others who are struggling through dark days.

The only unpleasant news of the day is that Bryce still has a very sensitive stomach. He is a surprisingly gassy baby, which also makes him a somewhat fussy baby; there have been times that he's screamed for up to an hour, and I can literally hear his stomach rumbling from across the room. Given that all he eats is breastmilk, which is supposed to be the most easily digestible food known to man, I'm a bit worried about what's to come. Also, we have had a couple of spontaneous reflux/choking episodes, which makes it difficult to imagine how Christie will be able to go anywhere alone. It's pretty hard to drive when you have a baby in the back seat who may stop breathing at any moment.

Now, on to the good news! Bryce had another follow-up appointment with the opthamologist this morning, and his retinopathy of prematurity (ROP) has completely regressed! She said he is not completely out of the woods yet, as preemies with severe ROP are at highest risk of retinal detachment until 41 weeks gestational age (next week for Bryce), but she felt that he was very unlikely to suffer that fate. It's a little too early to say anything about his visual acuity, but she said we can expect "visual behavior" (such as tracking objects with his eyes) during the next few weeks!

As far as feeding is concerned, Bryce seems to be doing better. After our experience during the first few days, we reluctantly agreed to pay the outrageous fee of $120/mo to rent a baby scale for home use. Now, Christie can weigh Bryce before and after he nurses to determine almost exactly how much he ate, which will allow us to more accurately assess whether his nutritional needs are being met. Better yet, he was up 60 grams (2 oz.) on Wednesday, and an additional 50 grams today! Hopefully, this marks the beginning of a new trend towards even chubbier cheeks, and perhaps the resolution of some of the feeding issues described above.

The Bryce Sonnek Economic Recovery Act

2009-09-16T22:02:00.000-05:00

So, I found myself with a little free time to think in the wee hours of the morning, and I came up with a great way that Bryce and I can serve our country during these dire financial times.

As you all know, Bryce's care has not been cheap. In fact, room and board in the NICU ran about $10K per day, and even the ICC charged $6K per day. What many of you may not know is that my employer is primarily a government contractor, and since they are self-insured, I suppose that means that Bryce's care was paid for largely with tax dollars (thanks, by the way).

Christie and I recently learned from Bryce's home nurse that some micro-preemies remain in the hospital for upwards of four years! However, since we're such fantastic parents, we've graciously agreed to assume full responsibility for Bryce's care after only 108 days. Best of all, we're willing to do it for a mere $1K per day -- over the course of four years, we'll have saved the taxpayers $6.7 million dollars! I like to call it the Bryce Sonnek Economic Recovery Act.

We hear a lot these days about "helping out the little guy", and I seriously doubt that you can find too many guys who started out smaller than Bryce. Everyone loves babies, so it's sure to be a winner politically, and my economic advisers assure me that it makes at least as much sense as collateralized debt obligations. Everybody wins! I'll be sending my proposal to President Obama later this week.

P.S. In case it wasn't obvious, we're feeling a bit better after a more restful day. Bryce is still having tummy issues; more on that when we know more.

The Honeymoon's Over

2009-09-15T15:53:00.000-05:00

Exhaustion is the word of the day. Christie and I are feeling physically drained after four sleepless nights, and our emotional reserves hit empty after Bryce's first check-up this morning.

I'll start with the good news. Bryce's pediatrician (who happens to be Logan's as well) was highly recommended by the neonatologist at Children's, and he assured us that he has a great deal of experience caring for preemies. He was impressed with Bryce's behavior and reflexes, and said that he thinks Bryce will have a good neurological outcome.

We should have been thrilled by this news, but our spirits had already been broken by that merciless device which is hated by so many: the scale. After four days and nights of patiently cajoling Bryce to take enough food, we learned that he's gained a measly 40 grams since discharge. At that rate, he won't hit Logan's birth weight (7lb, 12oz) until Christmas! The pediatrician said that it will be hard to for him to drink enough milk to meet his needs, but we can't fortify his milk (as they typically do) because of his milk/soy sensitivity. He had been tracking the 10th percentile for weight, length and head size, but during the past 10 days, he's fallen off even that low standard; quite the predicament. For those keeping score, Bryce is 6 lb., 2 oz., 18.5" long, and has a head circumference of 34 cm. Today is his "due date", so his corrected age is officially 0 days old!

We also had a discussion about the upcoming cold season, and it seems that they really do expect us to keep Bryce quarantined at home. The pediatrician encouraged us to avoid all public places, and said that "no one should breathe in Bryce's face, or touch his face/hands". Other than "brief periods in our backyard", we were told that he really shouldn't go out. So much for the whole cuddly newborn thing. On the plus side, we get priority service at the doctor's office; no waiting room for Bryce!

A wise man once said, "nothing worthwhile is ever easy." I just hope we're up to the challenge.

Life with Bryce

2009-09-13T15:30:00.001-05:00

I'm happy to report that, so far, caring for baby Bryce has been reminiscent of caring for baby Logan. Of course, we've only been sleeping a few hours at night, but that's to be expected with a newborn; in fact, if Logan would let us sleep during the day, we might both be fairly well rested! :-P

The most notable difference so far is feeding-related. With Logan, mealtimes were easy. He nursed consistently from day one, and he didn't dawdle; during the night, Christie could more or less feed him in her sleep. For Bryce, mealtimes are a major stressor for everyone. Like many preemies, he is struggling to maintain the calorie surplus he needs to gain weight -- while nursing, he often works too hard to take in a small quantity of milk. As a consequence, we've been bottling him for at least half his feedings.

Unfortunately, bottling requires the complete concentration of at least one adult for about an hour. The milk comes out of the bottle more easily, requiring less work from Bryce (i.e., more calories conserved); however, sometimes he gets more milk than he expects, which causes him to choke. Thus, whenever we bottle him, we have to pay very close attention to his breathing to ensure that he isn't getting overwhelmed. To make matters worse, Bryce came home on several medications, and judging from his reaction, they're definitely not bubblegum flavored. To get him to take them, we mix them with a little milk in his bottle, but he still chokes every time we give him the meds. Hopefully, we can get him to put on some weight, because as Sandra Moore so eloquently put it (see "The Preemie Experience" in an earlier post), "the (severity of the) constant fight to gain weight is in direct proportion to the preemie's ability to do so".

Another major difference, which hasn't affected us too much yet, is Bryce's frailty. I've mentioned in earlier posts that the ventilators that saved Bryce's life in the early days also damaged his lungs. As a consequence, Bryce has been diagnosed with a condition called Chronic Lung Disease (CLD). Hopefully, his lungs will heal over the next year or so, but since they are so fragile right now, any type of respiratory infection could be very serious for Bryce. There is one strain of cold in particular, called Respiratory Synctial Virus (RSV), that most babies catch before age 2. Unfortunately, the doctors have warned us that if Bryce catches this cold during the coming winter, he'll very likely wind up in the hospital. In fact, the doctor said that both of the boys should steer clear of any type of childcare for the first year, and that they should avoid other places where they might come in contact with large groups of children. That, combined with the coming cold/flu season, means that you probably won't see us out and about too much during the next few months. Also, everyone in the Sonnek household is learning to be very conscientious when it comes to proper hand-washing and hygiene, and we'll be asking the same of anyone who comes to visit.

I suppose that by now our readers must feel like living with Bryce is all doom and gloom, but we just want everyone to understand that we're not actually weird, overprotective hermits. In truth, these past forty eight hours have been a dream come true. Sitting with Bryce as he dozes, listening to him breathe, inhaling that baby smell, smiling as Logan runs over with yet another toy car for him, and imagining our future together -- these are just a few of the things we've experienced in the past two days that have made the first 108 all worthwhile.

Jubilation (The Last Day)

2009-09-11T15:03:00.005-05:00

Once again, I find myself at a loss for words, but today's tears will be of a different type. Late this afternoon, after a mere 108 days, Bryce Thomas Sonnek will be coming home. Our sincerest thanks to all the doctors, nurses, therapists, social workers, chaplains, family and friends who have made today possible. They say that it takes a village to raise a child; in this case, they could not have been more right.

Today marks the beginning of an entirely new journey for Bryce. As far as infant/child development goes, we know that he will likely follow a road less traveled. Christie and I both found a great deal of hope and inspiration in the blogs of other micro-preemie parents, and I will continue to post periodic updates, particularly with regard to the unique joys and trials of raising a 24-weeker. I hope future preemie parents find solace in Bryce and Chloe's story.

We did it! More later. :)

UPDATE: The photo gallery (Logan gave him the truck)

Not today (107 days)

2009-09-10T20:32:00.003-05:00

Christie's 30th birthday started off on a sour note. When she called the NICU at 4AM this morning, they told her that Bryce had lost 20 grams (about 2/3 of an ounce); one day hardly signifies a trend, but this was actually the fifth consecutive day of modest gains/losses. Thus, we were worried that they'd have to put him back on scheduled feedings using the NG tube, which would be a significant setback. However, as the day progressed, our hope was restored; Bryce needs to take about 50 ml of milk every three hours to meet his caloric needs, and while he was taking 30-50 ml yesterday, today he has taken 100, 40, 50, 60, 65, and 80, each roughly three hours apart!

When the doctor stopped by late this afternoon, she told us that his weight gain this week has been on the low end, and she'd like to watch him a little longer to minimize the risk of re-hospitalization due to poor growth. However, given how well he's doing today, she made it clear that if we felt strongly about it, then we could bring him home. After a brief discussion, Christie and I decided that while it would be cute if Christie and Bryce shared a "birth"-day, we'd much rather wait a few days until everyone is confident that he'll thrive at home. So, we left empty-handed, but with a new found optimism; I'm sure Logan's teddy bear won't mind keeping the bassinet warm for a little longer.