And They Lived Happily Ever After

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

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

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

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

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

Million Dollar Baby

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

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

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

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

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

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

Soaking up the California sun

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

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

Terrific Two!

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

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




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



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



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




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

Two years ago

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



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

Last call for Team Squeaker 2011!

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



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




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

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

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

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

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

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

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

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


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

Laugh, cry, or cheer?

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





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

He never ceases to amaze.

Major Drama in Preemie-land

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

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

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

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

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

Score one for the good guys.

UPDATE: Makena hits the mainstream news.