Saturday, October 10, 2009

Bryce in a nutshell

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. Print this post

1 comment:

  1. You and Christie certainly know how to make a michro-preemie baby very, very happy! As we recall all of the events, growth, challenges since May 26, we are deeply grateful as well to all the caregivers you mentioned. All the pics of Bryce napping, smiling and looking about make us know that he is truly a "happy camper". For that we give a thousand cheers to his immediate family; Jason, Christie and Logan. Together you have pulled off the challenge of a lifetime. Keep on sharing with Bryce your love, hope and dreams for his future. The results show in his smiles and contentment. Just look at him!!
    Love and prayers,
    Grandma & Grandpa