Thursday, October 29, 2009

Back under the knife

Though he's sixty times younger than his old man, Bryce will have been on the operating table just as many times in a few short weeks. That's hardly the kind of precociousness I'd hoped for in my children, but I do find some solace in the fact that he's had fewer, and less dangerous, surgeries than your average micro-preemie.

Unlike his previous laser surgery, this time he really will be under the knife. We visited the pediatric urologist at Children's Hospital today, and he recommended that Bryce's inguinal hernia be fixed before the end of the year. It's not an immediate danger, but they almost never close on their own, and it could abruptly become an emergency situation if his bowel gets incarcerated (trapped outside the abdominal wall). As predicted, the surgeon is also going to fix his umbilical hernia as long as he's poking around in there.

The good news is that this surgery is not terribly dangerous. The doctor told us that inguinal hernia repair is an outpatient procedure for most people, but with preemies everything is more complicated. For Bryce, the biggest concerns are anesthesia-induced apnea and infection. At Children's, they mitigate the risk of the former by "employing the best pediatric anesthesiologists in town" and mandating a hospital stay of at least one night following surgery. As far as infection is concerned, they generally don't use surgical knives that have fallen on the floor (unless it has been less than five seconds, of course). ;-P

Someone must've tipped Bryce off about Santa's naughty and nice lists, because he's still doing everything he can to work his way on to the latter. His growth has been incredible (8 lb, 10 oz today), and he's even started smiling at Mommy, Daddy and big brother Logan. His typical night time routine is to eat at 10pm, sleep quietly until 2:30am, eat again, then sleep until 7:30am; what more could a parent of a six-week-old ask for? He really seems to have turned the corner, and you'll hear no complaints from us about that. I still have to be pretty quick with the camera to catch those smiles, but I've included a few of his goofy grins with this post, along with a movie that shows how great his eyes are doing. Enjoy!

Saturday, October 24, 2009

Happy days, quiet nights

Every once in a while, I pause to reflect on some aspect of my life and realize that I'm very content with the status quo. This past week with Bryce has definitely been one of those times. He's healthier than he's ever been and his temperament changed almost overnight from fussy, impossible-to-please little tyrant to happiest baby on the block. For the past few nights, he's slept for 9 hours with only a single feeding break in the middle! I still find myself lying awake at night on occasion, but it's the more easily banished fears of what may come (or ghosts of the past) that keep me up, rather than quandaries of the present. If only we knew how to keep him this happy and healthy. :)

We bid farewell to one specialist this week, but we added two more; I suppose that's progress of a sort. Bryce's retinologist said that his eyes have fully recovered from the laser surgery and that his retinas look "awesome," so our little champ has officially beaten retinopathy of prematurity. She referred us to a pediatric opthamologist, which is one of several big events looming on the horizon. In early November, the opthamologist is going to test how well Bryce can see to determine whether he needs baby glasses. Between now and then, we've got important appointments with a urologist to check on his hernias, a pulmonologist to evaluate his lung condition and an otolaryngologist (ear-nose-throat doctor) to check on his cleft palate. That's three too many opportunities for our peace and harmony to be disturbed by some complication that we're blissfully ignorant of, but if Bryce's luck holds we should be able to cross a few more names off his list of caregivers in two weeks.

Wednesday, October 21, 2009

Halloween fever

The Halloween season is in full swing, and the malls aren't the only ones peddling fear. As if the mass hysteria surrounding the economy weren't enough, virtually every media outlet, medical facility and educational institution has been broadcasting regular updates on the H1N1 death toll ticker. Notifying the public about a health threat is certainly a laudable endeavor, but how exactly do I benefit from daily updates on the number of children who have fallen victim to the flu? To make matters worse, the majority of these stories attempt to reassure their readers by pointing out that most of the young victims had "underlying health conditions", as if their loss is somehow less painful due to the fact that life dealt them a rotten hand to begin with. As the father of one of these medically-challenged kids, I can assure you that we harbor the same hopes and dreams for Bryce as we do for our more robust child. My heart goes out to all the parents who've lost a child to this or any other illness, especially those whose grief has been marginalized due to the circumstances of their child's birth.

Fortunately, we don't have any spooky news to report from the Sonnek household. Everyone is healthy, and Bryce continues to exceed expectations. In fact, he's officially outgrown his newborn diapers and outfits, as he cracked the eight pound mark this afternoon, and he's looking better with each passing day! Hopefully, we're done with all of the preemie tricks for a while, and now we can just enjoy the treat (a healthy baby boy) that we've been anxiously awaiting.

Sunday, October 18, 2009

The times, they are a changin'

For the past few days, Christie has been struggling to articulate the reason why she feels Bryce is maturing, but she couldn't quite put her finger on it. I was skeptical earlier in the week, but after spending the weekend at home with him, I've started to notice a number of exciting changes as well. First and foremost, he'll finally sleep without being held constantly. During the day, it's usually only an hour or so, but he's been sleeping soundly for 3 or even 4 hour stretches at night. He still dislikes the crib, but his papasan bouncer chair and swing have quickly become new favorites in the Sonnek household.

Mealtime has become a lot less stressful, too. The hour-long, anxiety-ridden feedings of the past have gradually transitioned into twenty-minute affairs in which choking is the exception rather than the rule. He hit 7 lb., 12 oz. (Logan's birth weight!) this morning, and doesn't seem like he's planning to slow down any time soon. Finally, Bryce is more engaged with the world around him. If he's resting on my lap, he definitely prefers sitting upright, so that he can see what's happening around him, to lying flat, and certain toys consistently arouse his interest.

I've included a short video clip of this morning's Tummy Time below. Not too exciting, but he sure does have a lot of energy for a one-month-old!

Wednesday, October 14, 2009

Packing on the pounds

After a few disconcerting days of zero growth, we decided to try bumping up Bryce's fortified milk volumes from 60 ml to 75 ml, and he has responded in a big way! He's roughly seven and a half pounds today, which is an average growth rate of 1.5 ounces/day (nearly a four-fold increase!) over the past five days. His length is up to 19.75", and his head circumference has increased to 36.5 cm. Bryce's pediatrician was very pleased with our burgeoning boy at this afternoon's check-up, and we were equally pleased to hear him described by a doctor as a "very healthy-looking baby."

Of course, it would be very un-preemie-like to have a several-day period with only good news, and the last five days were no exception. On Sunday, Christie was a bit panicked after finding a rather large lump in Bryce's private area. After a few minutes on Google, I decided that Bryce had either the world's largest testicle or an inguinal hernia. Fortunately, the lump didn't seem to be causing him any pain, and the fact that it went away after several hours pretty much ruled out the first theory. When I explained what we'd seen to Bryce's pediatrician, he said that I'd described a textbook case of an inguinal hernia, and suggested that we contact a pediatric urologist sooner rather than later, since this type of hernia rarely resolves without surgical assistance. So, Bryce will likely undergo the second surgery of his life sometime before the end of the year. I'd like to say that I hope it will be his last, but that's so unrealistic that I'll settle for hoping that it is quick and painless.

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.

Wednesday, October 7, 2009

Walking a fine line

Sometimes, "wait, watch and hope for the best" is the most appealing option, and I was relieved to learn that Bryce's pediatrician agrees that this is one of those cases. All of his tests came back clean, and we haven't had any more unwelcome surprises in his diaper. Our own experiments with fortified versus straight breastmilk have clearly demonstrated that he needs the extra calories to grow, so I am very reluctant to tinker with his diet. The doctor concurred that since he's doing so well, it is better to continue with the Elecare in the hope that he'll eventually outgrow his extremely sensitive and immature digestive system. Based on Bryce's reaction to the nearly constant rumbling in his tummy, his indigestion isn't a whole lot of fun, but it's far less dangerous than being six pounds forever.

In other news, Bryce hit another important visual development milestone! Christie has been working very hard to get him to follow objects with his eyes, and on Tuesday evening, he was clearly tracking a little Frosty the Snowman toy. He may have been following the blinking red lights in Frosty's cheeks, rather than the toy itself, but we're pleased as punch either way. We were also cleared to discontinue Bryce's apnea monitor during the day, because he hasn't had any apnea spells since he was discharged, but they want us to continue using it at night for another month due to his occasional reflux/low-heart-rate spells.

I'm actually writing this post from 32,000 feet above somewhere in middle America, and the fact that I'm confident enough in Bryce's health to take a day trip for work speaks volumes about how far we've come. There's still a long road ahead, but at the rate he's been growing during the past week, he'll hit 7 lb., 12 oz. (Logan's birth weight) a lot closer to Halloween than Christmas. Go, twinkie!

Sunday, October 4, 2009

Lucky seven

Little Bryce continues to blossom with the help of our new friend Elecare. He crossed the seven pound mark this morning, and has been doing great all week! He visited the retinologist again on Thursday, and we're pleased to announce that his eyes are both fully mature and "architecturally sound." We'll have to wait a few months before she'll be able to give us some idea about how well they function, but we do know that he tracks light and sees something in mirrors worth staring at. By week's end, we were both feeling a lot less overwhelmed and a lot more optimistic about the future.

Unfortunately, we couldn't get through the weekend without a little bit of drama. Bryce's sharp-eyed followers may have noticed that he has a small umbilical hernia (see the bath picture from 8/23 -- it's the little bubble where his belly button should be). This type of hernia is not unusual for a preemie, and typically it is painless and resolves without treatment. At 10PM last night, while I was changing Bryce's diaper, I noticed that the hernia had taken on a purple hue, and that it was firmer than normal. Christie agreed with my assessment, so we decided to play it safe and called his pediatrician. We were dismayed to learn that Bryce's symptoms were suggestive of a serious condition involving misplaced bowel, which would require immediate attention. The pediatrician advised us to bring him to the ER, so we packed our bags, hopped in the car and headed back to Children's.

Our ER visit turned out to be yet another good news/bad news affair. All of the staff were extremely friendly and well-versed in preemie care protocol, but we felt like we were in a war zone for the ten minutes we spent in the waiting room. I longed for Bryce to be able to take refuge in some sort of private hermetic bubble as I listened to sick kids hacking away while their parents described flu-like symptoms to the admissions nurse. When we were finally moved to a private room, the nurse's well-meaning reminder of how critical it is to keep Bryce healthy didn't help matters. I've never been a germaphobe in the past, and I don't particularly like feeling as if I have to choose between isolating my family from the world and endangering my son's life.

Thankfully, the hernia thing turned out to be a false alarm. However, we did discover that he had blood in his stool again, which means more sleuthing to figure out what caused it. Is it the Elecare? Did Christie accidentally ingest some milk or soy protein? Or is it something else entirely? Little Bryce can't give us the answer, so it seems it's time for Dr. House to rally 'round his apprentices and go back to the whiteboard.