Sunday, November 29, 2009

The promise of the future

The linked article contains some interesting information about Bryce's lung condition and some promising research into its prevention and treatment. I was bummed to hear CLD/BPD baby lungs described as the "lungs of a 50-year-old smoker", but "healing juice" that "regenerates dead cells" sounds pretty darn good.

Research suggests stem cells could help lung development in preemies

Saturday, November 28, 2009

Living the dream

Ok, maybe it's not the typical baby dream, but it's definitely the micro-preemie parent dream! Bryce had a great six-month check-up on Friday; his official measurements are:
  • Weight: 10.8 lbs. (10-25% for his adjusted age of 2.5 months)
  • Length: 21.25" (still < 3%)
  • Head size: 40 cm (25-50%)
As you can see, he's still exceeding expectations with respect to weight gain and head size, but he probably won't be an all-star center for the Timberwolves. Bryce's pediatrician stepped through a chart with different developmental milestones, and in five of the six areas (all but social skills), he's behaving like a 3-4 month old baby. The doctor also said that he sees a lot of babies, and he's convinced that Bryce is a winner both physiologically and neurologically.

We did have a bit of drama (of course), but the doctor is convinced that it's going to turn out to be a false alarm. When Bryce's pediatrician reviewed his head ultrasound from a couple weeks back, he noticed that the relative amount of fluid between his brain and his skull has increased slightly. This could be an early sign that his brain isn't growing properly, but given how well he's doing developmentally, it's much more likely a sign that Bryce is subjected to way too many tests.

I'll end on a high note -- for the first time since he came home, I can say that we have *no* doctor appointments next week! This is one dream I hope we never wake up from.

Thursday, November 26, 2009

Giving thanks



Happy six-month birthday Bryce and Chloe! On this day in May, you made your debut in this world in spectacular fashion. When we met, you couldn't greet us with so much as a whimper because of the breathing tube that was hastily forced down your throat, and your tiny hands were hardly the size of my thumbnail. I had read that a preemie's head can be as small as a lemon, and I remember standing at your isolettes thinking, "A lemon? God, I wish their heads were the size of a lemon. They're closer to the size of a golf ball." We were surrounded by doctors, none of whom could tell us whether you'd survive the next hour, and we knew that, even in the best case, we'd spend the next eight years worrying about the long-term effects of your prematurity. And yet, none of that mattered. We were irrevocably bonded to you at 11:30 AM on that fine spring day, and your Mommy and I both agreed that we were going to do everything in our power to provide you with a chance to enjoy that which we've come to appreciate so deeply: life. We've never regretted that decision for even one minute, and I know that we never will. Love you, Squeaker. Love you, Princess.

It is oddly fitting that the twins' half-year birthday happened to fall on Thanksgiving, because it is an event which has redefined how I experience life in ways that I am profoundly grateful for. Yes, 2009 has been a year of great heartache and anxiety for our family. Do I wish things would've turned out differently? Absolutely. However, I think it sometimes takes an event of this magnitude to strip away all the noise and reveal the fundamental joys of human existence. It certainly has given me a much deeper appreciation for many aspects of my life, and I'm especially grateful for the people in my life who give each day meaning.

Today, I'd like to extend a special thanks to a few of those who've touched our lives in unexpected or profound ways during the past six months. This list is by no means exhaustive, so I hope no one will feel overlooked. We're very grateful for each and every card, e-mail, visit, gift and other kindness, no matter how great or small.

Thank you, Paul, for not giving up on our little girl, even after the writing was on the wall. Those fifteen minutes were priceless.

Thank you, Sally, for always going the extra mile for Bryce.

Thank you, to those special NICU nurses, for patiently fielding calls from two very anxious parents and for caring about (as well as for) our little ones.

Thank you, Chuck, for always being there with a smile and a prayer.

Thank you, Rachel, for shielding us from that mountain of paperwork and those insufferable insurance people.

Thank you, Poozie, for spending enough time at our house to qualify as a voter in Anoka county. Logan is blessed to have a Nana who loves him so much.

Thank you, Logan's babysitting crew, for providing a loving and stable home for him while we were away.

Thank you, Sarah V., for your dedication to Logan. You were much more than just a babysitter to him.

Thank you, ARCC, for honoring Chloe with a charity book drive. We were deeply touched by the gesture.

Thank you, Ryan @ Mueller-Bies, for handling a delicate matter so admirably. You're a credit to your profession.

Thank you, Grandma Marlene, for ensuring that our fridge is always well stocked with delicious homemade food. When I offer Logan Kraft Mac N' Cheese, he now says "No, Gamma Mac N' Cheese".

Thank you, Grandpa Duane, for taking such an active interest in learning about the twins and their care.

Thank you, Grandma S., for your kind words of wisdom and support.

Thank you, Logan, for being the heart of this family.

Thank you, Chloe, for brightening our lives with your presence, then and now.

Thank you, Bryce, for tenaciously defying the odds. Every time they told us to expect the worst, you showed us that we should never count you out. Keep up the good work.

Happy Thanksgiving!

Sunday, November 22, 2009

Sunday fun-day

Logan's congestion cleared up overnight, and he didn't develop any other obvious symptoms, so the Department of Small Baby Security has downgraded the germ threat level to yellow. Other than that, it's been a pretty quiet weekend; in fact, Logan and I even managed to talk Mommy in to leaving Bryce with us while she took a long overdue break to go to a movie. It might not sound like much, but I'd say that's a strong indicator of how well Bryce's doing.

We only have *one* doctor appointment next week -- woohoo! Enjoy the pics/vids.

Bryce has mixed feelings about saying hi to his friends on the Internet

Bryce LOVES the Playskool Swing N' Score baseball

Friday, November 20, 2009

The Weekly Roundup

They say life imitates art, and I know medical dramas are all the rage, but I never expected to be living one! Fortunately, the daily ups and downs have been fairly minor lately, and I'd say the week as a whole was more or less a wash.

Bryce is still healthy, but Logan sounds like he's coming down with a cold, and even if we were both home every day, I can't imagine how we're going to be able to keep his germs from spreading throughout the house. Ironically, we're fairly sure he picked it up at the doctor's office; Bryce had an appointment on Wednesday, and Logan was crawling up the walls in a waiting room filled with sick kids. C'est la vie.

Bryce's speech/feeding therapist had some especially encouraging things to say about his development after observing all the smiling and cooing he does when people interact with him. However, his tremendous growth spurt seems to be petering out; after several weeks of gaining an average of 1.5 oz. per day, he's dropped to about 0.5 oz per day this week. That's not terrible, but given our fear of future growth/feeding issues, we liked it a lot better when he was in the right-hand tail of the preemie growth bell curve.

The biggest medical news of the week is that Bryce passed a hearing test in both ears! I guess the old cliche is wrong; for Bryce, the fourth time's the charm. As a consequence, they've decided to cancel his ABR hearing test for the time being, which is especially good because they have to anesthetize infants for the ABR.

Finally, I wanted to let everyone (but especially our preemie parent followers) know about a documentary, called Little Man, which was on Showtime (and is available from Netflix). The movie is about a one pound 25-weeker, named Nicholas, who had an especially turbulent entry into this world. I'm not sure I'd go so far as to say I recommend the movie, but it did evoke smiles and tears from both Christie and I. A great deal of time is dedicated to the ethical and family dilemmas associated with micro-preemies, and I found it hard to get through the first twenty five minutes. Though Nicholas had a longer and tougher NICU stay than Bryce, most of the medicine looked all too familiar. It's definitely not date-night material, as this micro-preemie Mommy doesn't pull any punches, but if you're interested in a realistic documentary of the challenges of NICU life and raising a micro-preemie at home, I'm guessing this movie is one of a kind.

Tuesday, November 17, 2009

Fight for preemies

10 pounds today! It might not sound like much, but that's an eight-fold increase over the past six months. How many people do you know who've managed such a feat? Better yet, Bryce seems happy and healthy, he's right on track (developmentally) for a two-month-old and he hasn't been giving his parents too much grief.

The past few days have been very uneventful, but today is Prematurity Awareness Day, so I wanted to make everyone aware that this preemie is doing great! Also, I'd like to dedicate this "fight for preemies" post to the real fighters who spend their days on the front lines for these kids, and to recognize how lucky we are.

It certainly didn't have to be this way. Six months ago today, Christie and I were sitting in a hospital room, still reeling from a dramatic shift in our reality. When you look at Bryce today, it's hard to believe that on May 17th, we were in the process of having frank discussions with doctors about whether they would provide "intensive care" or "hospice care" for our children.

Although we instantly recoiled at the idea of doing anything less than everything we could for Chloe and Bryce, the doctors were right to broach this very sensitive subject. Even the staunchest believer in the sanctity of life must weigh their desire to fight for their child against the likelihood of a positive outcome, and the odds against the twins were disheartening. Based on studies published in top medical journals which tracked micro-preemie outcomes through the first year, I calculated the following statistics for Bryce and Chloe when they were born:
  • Survival rate: 40%
  • Survival w/o moderate-severe disability: 10%
It's easy to lose hope when you look at those numbers. Given where we started, there was only a 19% chance that we'd leave the NICU with even one healthy baby. It would've been very easy, perhaps even rational, to write Bryce and Chloe off as a lost cause. And yet, when we decided we were "all in", the folks at UMMC (and subsequently at Children's) fully committed their time and energy to helping our babies for no more remuneration than they'd receive if they adopted a specialty where the success rate is much higher than 40%.

Like that of many micro-preemies, Bryce and Chloe's story has taken many tragic turns; Christie and I still struggle with the loss of our little princess. However, it is also a story of hope and courage. Hope, in the form of two naive and overwrought parents who just wanted to give their children a chance at life, and courage, in the form of everyone who fought to make that dream a reality. I challenge anyone to look at that smiling face and tell me it was a poor decision.

So, I wanted to take this opportunity, once again, to thank all the doctors, nurses, scientists, therapists and others who truly fight for preemies every day. These folks take one look at those statistics, and in spite of the heartache they're almost sure to endure, say "to heck with that -- let's save those babies."

Friday, November 13, 2009

A sigh of relief

Bryce met with the last of his new specialists today, and I'm pleased to say that in spite of the inauspicious date, we ended the week on a high note. His pediatric pulmonologist (lungs) said that he is doing fantastic, and mostly confirmed what we already knew. Bryce does have Chronic Lung Disease, a scarring of the lung tissue which is practically inevitable in extremely premature babies that need long-term ventilation. However, he's been off oxygen for more than two months, he hasn't had any apnea spells since he left the hospital, and the doc said that his lungs sound great. His CLD is the biggest factor in our fear of respiratory infection, and the pulmonologist advised us to continue to be extremely careful through the end of April (*sigh*), but he's optimistic that Bryce will be one of the kids who'll outgrow this condition. The doctor also said that he no longer needs three of his medications, including the dreaded salts that precipitate most of his choking episodes, so by early next week he'll only be taking the pink stuff all kids love: amoxicillin.

The only bittersweet news of the day is that they're going to take away our security blanket! Despite the inconvenience, Christie and I find a great deal of comfort in knowing that Bryce's apnea monitor will emit a shriek that would wake the dead if he should stop breathing in the wee hours of the night. However, he hasn't had any alarms in three weeks, and none of his alarms to date have been serious, so the pulmonologist said it's time to give it back. He wanted to take it today, but one look at Christie's panic-stricken expression prompted him to give us an additional two weeks to "get used to the idea."

This mildly upsetting new development was swept from our minds shortly thereafter when the pediatrician called with some eagerly anticipated results. Bryce's head ultrasound, which was taken yesterday morning, was completely clean: no brain swelling, no extra fluid on the brain, and no enlarged ventricles! All said, it was a fantastic Friday the 13th for our mighty mite.

Wednesday, November 11, 2009

Germs: 1, Sonneks: 1

And we'd be perfectly content to leave it at that. Yesterday was a bit rough, as I did end up with a low-grade fever and some intestinal distress, but all that's left this afternoon is the cough. During the past 48 hours, I've had most of the symptoms of the flu, but it wasn't nearly as bad as I've heard it described. Perhaps I'd built up a partial immunity from the vaccine shot I received a week ago, or maybe it's just a cold. More importantly, it's been nearly three days since I started feeling out of sorts, and no one else in the house is sick yet.

Bryce has been at home with us for exactly two months today, and when you consider that period as a whole, he's doing remarkably well. One of the county nurses came to check up on him yesterday, and he's currently measuring 21.25" long and weighs 9.5 lbs. For his adjusted age of 2 months, he's moved up on the growth charts from the "< 3 percentile" to "5-10 percentile" with respect to his weight. Given his rocky start and how common it is for micro-preemies to have growth/feeding issues, I'd say that's cause to celebrate! His lungs are still clear as a bell, and we've had naught but false alarms on the apnea monitor for at least two weeks.

Some of you may have noticed that I added a little "Fight for Preemies" badge to the blog sidebar. This campaign is sponsored by the March of Dimes as part of Prematurity Awareness Month, and its goal is to raise awareness of the high cost and growing prevalence of premature birth. At first blush, it seems silly to think that blogging about our experience with prematurity can have any meaningful effect on the more general predicament. Also, I felt a bit foolish supporting such a campaign; although premature birth is a problem that has become near and dear to my heart, I recognize that there are many ills in the world (hunger, cancer, heart disease, war, etc) that have a much broader impact on humanity.

However, after further consideration, I realized that unlike these other crises, prematurity wasn't even on my radar until it happened to us. I literally had no idea that preterm birth was as common as it is (50,000 micro-preemies per year in the U.S.), nor that they had the medical technology to save these tiny babies' lives. If, by telling our little miracles' stories, we're able to make others aware of the problem, that sounds like a pretty good first step toward making prematurity a priority on the national agenda. I know I'm biased, but I'm fairly confident that the overwhelming majority of people would agree that it warrants far more attention than some of the "crises" currently being addressed by Congress (steroids in baseball, anyone?).

With that in mind, Christie and I consented to a feature story on our terrific twosome on the website A fellow micro-preemie parent is a writer for the site, and she asked if she could use Bryce and Chloe's story as one of her Prematurity Awareness Month profile stories. If you're reading this, everything in the article is probably old news, but check it out if you've got a free minute!

Monday, November 9, 2009

Germs: 1, Sonneks: 0

Despite assiduously following the CDC recommendations, the germs have struck the first blow in the war to keep Bryce healthy. I woke up this morning with a mild sore throat and a tickle in my lungs, which I attributed to the very dry air in our house. By early afternoon, I'd developed an uncomfortable pressure in my lungs that was making it impossible to work, so I went to Walgreens, bought two jumbo packs of face masks and some Halls, then locked myself in our basement. During the past few hours, I've developed a cough that feels like it's tearing my lungs apart, a splitting headache and (worst of all) a gnawing fear that I'm going to be responsible for Bryce's re-hospitalization.

Fortunately, our lower level is a walkout with a bathroom and a futon, so I only really need to head upstairs when I want to eat. Also, our families have already selflessly volunteered to step in for me at home during the next few evenings, so I only feel moderately awful about leaving Christie to deal with the kids alone. Right now, I'm just desperately hoping that no one else has already caught the bug, and that my immune system can squash it in short order.

So far, life is carrying on happy as can be without me. As you can see in the attached video, Bryce is doing so well that he seems to have evoked a bit of sibling rivalry in his big brother. I'm sure it won't be the last time.

Sunday, November 8, 2009

Show and tell

Well, more show than tell. Enjoy!

Raking leaves in the backyard with my big brother

Mommy, Daddy and Me

I've been working on beefing up these cheeks! (9.25 lbs)

Snug as a bug in a rug -- the only way I sleep

Look how strong I am! I can almost sit up with a little help from my Bumbo!

Melting Mommy's Heart

Thursday, November 5, 2009

A ray of sunshine

I sometimes feel like I'm the stormcrow, constantly heralding the arrival of more troubling news. Bryce must have sensed my disquiet, because he put on quite a show for the occupational therapist (OT) today, and I could hardly wait to share the good, and only good, tidings.

After Bryce's trouble at the audiologist on Monday, Christie asked me if I'd ever heard him coo. I pointed out that he squeaks (kind of like a grunt), but I couldn't recall a time that I'd ever heard him coo. She was concerned that Bryce's language skills weren't developing because he couldn't hear, and my answer only intensified her concern. Since then, we've both been anxiously trying to prove to ourselves that he does respond to our voices and the sounds of the world around him.

Thus, I'm pleased (and relieved) to announce that he was cooing up a storm for the OT this morning. He didn't stop there, though. With a little coaxing, he grabbed some toys on his own, brought one up to his mouth and even rolled over twice! I'm also happy to report that sanity prevailed at Logan's H1N1 vaccination appointment this morning, as Christie had no trouble convincing the nurse that she ought to be poked as well.

I regularly try to remind myself that Bryce's journey will be different, that I can't expect that he'll be a typical newborn; really, I can't expect anything. Rather than lamenting the challenges he faces, I should be celebrating every moment that he's here with us, because in a different time or place, that simply wouldn't be the case. In reality, when you're dealing with the fear of illness or disability, it's easy to lose sight of the miracle of his life. Days like today certainly don't hurt. :)

Wednesday, November 4, 2009

What you don't know can hurt you

We're starting to develop a bit of a love-hate relationship with the medical profession. Yes, they did save our son's life, and they gave us an opportunity to meet our daughter, for which we are eternally grateful. However, it seems like we can't set foot in any kind of medical facility without learning at least one disconcerting new fact about Bryce. Thus far, most of his challenges are not life threatening, and we've met many amongst our friends and family who've shared comforting stories about overcoming similar challenges, but that's not the point. It's not the hernias, or the reflux, or the cleft palate, or his potential sensory shortcomings or any of the other stuff that kills me: it's the fact that he has to overcome all of them, and that the only reasonable expectation is that the list will continue to grow. It's like death by a thousand little disappointments.

So, on to the new facts of today. Bryce had his appointment with the pediatric opthamologist this morning, and the news gradually progressed from encouragingly good to uncomfortable-feeling-in-the-pit-of-my-stomach scary. First, they checked his vision using a number of simple tests. As expected, he had no trouble tracking toys that light up, but I was pleasantly surprised when he repeatedly followed a striped square embedded within a larger, solid rectangle. This was the first time I've witnessed visual behavior from Bryce that convinced me that he can see more than just light; those little eyes actually work!

Next, they did a test to determine how good his visual acuity is. The doctor said that Bryce is quite near-sighted, and that if he was going to school they would definitely fit him with glasses. However, his vision is good enough that it won't hamper his development as an infant, so no baby glasses for this kid!

It was at this point that the news started taking a turn for the worse. The opthamologist explained to us that Bryce's optic nerves are unusually pale. This could mean that the capillaries (small blood vessels) in the optic nerve haven't fully developed yet, or it could mean that the optic nerve was damaged (or didn't develop correctly) due to his early arrival. Since the optic nerve is essentially the signal wire between the eyes and the brain, you can imagine how a "frayed" optic nerve could cause all kinds of problems.

Finally, we get to the real scary stuff. Our readers may have noticed that Bryce holds his eyes wide open, almost as if he's just been startled, in many of the pictures. What you may not know, however, is that this isn't just a consequence of the camera flash; his eyes are usually like that when he's awake. The opthamologist noticed this behavior, and casually dropped the morning's bombshell: perpetually wide eyes is often a sign of increased intracranial pressure (i.e., brain swelling). As many of you know, we were deeply worried about this due to Bryce's intraventricular hemorrhage; however, his hemorrhage resolved very quickly, and all of his subsequent ultrasounds looked great. Nevertheless, the doctor recommended that we schedule another ultrasound of the ventricles to look for swelling as soon as possible. Never a dull moment in the life of a micro-preemie (nor his emotionally-battered parents).

Thankfully, everyone is still healthy, and I'm busy manufacturing H1N1 antibodies after (finally) scoring a vaccine at the U. I know it's just the placebo effect, but I already feel healthier. :) We managed to get Logan scheduled for vaccination too, but we're still fighting to get Christie classified as "high risk." Though it's barely begun, I've never been so eager for a "season" (cold & flu) to be over with.

Monday, November 2, 2009

Can you hear me now?

Well, we certainly didn't see that one coming! Today's appointment with the otlaryngologist (also known as Ear-Nose-Throat, or ENT, specialists) was the second in his spate of specialist meet and greets, and we expected it to be so uneventful that I opted to skip this one. The primary purpose of the visit was to evaluate his cleft palate, and though we're occasionally jolted awake by a heart-wrenching wail accompanied by milk dribbling out his nose, Bryce's reflux issues seem to be relatively minor.

You can imagine my surprise when I heard a catch in Christie's voice as she called with the post-appointment report. As predicted, the doctor wasn't concerned with the feeding-related aspects of the cleft palate, especially given how well (just shy of nine pounds!) Bryce has been doing. However, what we didn't know is that there are a number of ear problems which are commonly associated with a cleft palate. I wasn't there to get all the details, but as I understand it a cleft palate can cause (temporary or permanent) hearing loss due to fluid build-up or problems with pressure equalization, and the very fact that he has a cleft palate makes it more likely that he has a congenital defect of the ear, since the two develop at the same time.

The ENT repeated Bryce's newborn hearing exam, and this time he failed in both ears. So, they conducted another test (called the OAE) that measures how well his ear drums respond to sound, and the results were marginal; he didn't completely fail, but it was a D- at best. The doctor recommended that we schedule yet another test, called the ABR, at the hospital, which will allow them to measure his neurological response to sound. As I've said before, we know that he can hear to some degree, but I suppose that the ability to hear a pot dropped on a tile floor doesn't necessarily imply the ability to hear Mama's affectionate whispers. Unfortunately, the ENT warned us that it's unlikely we'll be able to get an appointment for the new test before 2010, so we won't have any more answers for a while.

Typical preemie drama aside, our little man is doing awesome. He's still sleeping for long stretches at night and he's starting to look downright chunky. If we can make it through the remaining appointments without any more curveballs, I'd say things are looking up for the Sonnek family.