Saturday, January 30, 2010

So far, so good

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)

Friday, January 29, 2010

Pesky little critters

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.

Tuesday, January 26, 2010


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.

Wednesday, January 20, 2010

Jubilant January

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.

Wednesday, January 13, 2010

Fantastic four

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.

Saturday, January 9, 2010

Big strides for little Bryce

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.

Wednesday, January 6, 2010

You might be a micro-preemie parent if..

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! :)

Sunday, January 3, 2010

Music to our ears

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