Saturday, February 27, 2010

March for Babies 2010

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.

Tuesday, February 23, 2010

Bryce's first report card

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!

Sunday, February 21, 2010

Fused palate

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.

Sunday, February 14, 2010

That's *my* bunny

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.

Tuesday, February 9, 2010

Soon to be sportin' some spectacles

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:

Monday, February 8, 2010

A few 'T' words

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.

Sunday, February 7, 2010

Winter weary

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.