Monday, July 4, 2011

Terrific Two!

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

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

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

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

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

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

Tuesday, June 21, 2011

Two years ago

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

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

Saturday, April 16, 2011

Last call for Team Squeaker 2011!

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

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

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

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

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

3. Location: Team Squeaker will be participating in the St. Paul walk at the same great location (Phalen Park) as last year! (

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! :

Sunday, April 3, 2011

Laugh, cry, or cheer?

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

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

He never ceases to amaze.

Friday, April 1, 2011

Major Drama in Preemie-land

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

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

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

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

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

Score one for the good guys.

UPDATE: Makena hits the mainstream news.

Sunday, February 20, 2011

My First Word

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

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

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

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

Sunday, January 16, 2011

Sunny Side Up

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

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

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

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

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

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

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