Wednesday, December 30, 2009

A strange feeling

Lately, I've rediscovered a feeling that has been absent from my life for the past fifteen months. It certainly isn't boredom, but it is something akin; for lack of a better word, I'll call it "relaxed". Relaxed is something that you feel when there are no immediate crises to be dealt with: no deadlines at work, no emergencies at home, and most importantly, no children straddling the line that separates life and death. It took a little getting used to, but it's kind of nice to have an hour at the end of the day when there is nothing that requires my immediate attention.

If you hadn't guessed by now, Bryce is doing great. He's an ounce shy of 13 lbs., and continues to delight the whole family with his burgeoning personality. He rolls over in both directions (tummy time rarely lasts more than a few seconds for this kid), and usually has one or two periods a day during which he coos at Mommy or Daddy for several minutes. We have a few check-ups on the calendar in January, but the general consensus in our house is that Bryce has become not only a relatively easy baby to care for, but a seemingly normal one as well.

He does still get winded very easily, which is something that we're eager to ask about at our first NICU follow-up appointment next month. Also, we've tried to wean him to two bottles of fortified milk per day, rather than his usual three, on two separate 72-hour trial runs, but he was unusually cranky and didn't gain any weight both times, so we're pretty sure he still needs the extra calories. With those minor exceptions, Bryce at 3.5 months could be easily mistaken for Logan at 3.5 months in terms of temperament, development and looks!

The entire family is eagerly anticipating the dawn of a new year which will almost certainly be an improvement on the last. As John Hambrock put it, 2009 was a dud (click the link to read the comic, which is especially appropriate since Logan was born in 2006).

Saturday, December 26, 2009

St. Nicu

This is great. I'm not sure who to credit it to -- just saw it floating round the Net.


Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;

A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Thursday, December 24, 2009

Merry Christmas!

Christmas tree? Check.
Presents? Check.
Stockings? Check.
Christmas dinner? Check.
Plenty of snow (with more on the way)? Check.

The only thing we're missing is you! Christmas won't be the same without all our family and friends, but we're confident that a small sacrifice this year will pay big dividends down the road. We hope that you all have a joyful and relaxing holiday; you'll be in our thoughts!

Bryce is doing terrific. He's delighted us a few more times with his laughter, and does his best to share his opinions with us (see video above). He's also really taken a liking to his big brother. Bryce practically demands to sit in his Bumbo whenever he's awake so that he can watch Logan play with his toys, which I'd argue is further evidence of good vision.

His recovery from surgery was quicker and easier than we'd imagined possible. Other than flat weight gain for the week, he hasn't shown any sign that he was in the slightest distress since we brought him home from the hospital. We took the dressings off his incisions this morning, and they look great; you can barely see the scar from the inguinal hernia (above his right leg), and his belly button appears to be healing up nicely too. With a little bit of luck, we won't have to go back to the hospital until he gets his cleft palate fixed next September.

I don't think Santa usually brings presents to thirty-year-olds, but we'd be willing to trade all the rest for a pair of healthy boys in 2010!

Monday, December 21, 2009


As life whirled around us, our hearts fluttering erratically, her tiny eyes bored into mine. "Don't cry, Daddy," they said. "This is how angels are made."

Twenty-six words. Twenty-six days. Neither were sufficient, but life's that way sometimes. Six months have passed since the day we lost our daughter. It seems a strange thing to commemorate, yet as painful as it is, it was the only moment we were given. Life moves on, Princess, but we won't forget.

Saturday, December 19, 2009

A fan of the Black Eyed Peas

Turn up your speakers! The video is a bit bouncy, and the best part is over in the first five seconds, but the sound of Bryce laughing is like ambrosia for my soul.

Thursday, December 17, 2009

Ahh, to be young again

I picked up Christie and Bryce from the hospital this morning, and unless you pull up his shirt, you wouldn't even know that he had surgery. This evening, I was changing his diaper and I was shocked to discover that the incision has already faded to a light pink. It takes me longer to recover from a hangnail!

Wednesday, December 16, 2009

Live from the operating room

LAST UPDATE, 8PM: Our baby boy is on the mend. He briefly woke up at 4:30 pm and guzzled an entire bottle before promptly falling back asleep. About two hours later, we were greeted with the typical wide eyes and goofy grin, so we knew he was going to be just fine. The doctor stopped by at 7:30 and said he's more or less clear to go, but they couldn't start the discharge process before 10:30 (because the protocol says so). Christie was already falling asleep, so we decided the two of them will stay the night. They've already weaned Bryce to infant Tylenol, and he seems perfectly happy; the doc says he should be "back to normal" by tomorrow. That kid is made of tough stuff.

UPDATE, 2PM: Bryce is still extremely lethargic, and he's as enthusiastic about eating as Christie is about sleeping in a bed that is literally eighteen inches wide. The nurse actually called the anesthesiologist, because they expected him to be more responsive by now and he's been arching his back in a way that suggests he's not terribly comfortable. The doc was surprised that he could feel anything after the spinal, but he prescribed a shot of morphine, and now Bryce's out cold. His sluggishness is nothing to worry about, but it does mean we won't be leaving this broom closet before 10PM this evening. After looking at the mean incision just below his tummy, I'm willing to cut the kid a little slack.

Luckily, Bryce slept until minutes before the surgery

X marks the spot -- you can't be too careful

Reassuring Mom and Dad with some pre-surgery smiles

Happy to be back in Mommy's arms

Morphine dreams

UPDATE, 11AM: Our little champ is out of surgery and back in Mama's arms! The surgery lasted about an hour, and he spent roughly the same amount of time in recovery. Christie and I were vacillating about whether to go through with the surgery right up to the minute that the OR nurse gently pried him from Christie's protective embrace, so we were somewhat relieved when the surgeon told us afterward that we definitely made the right decision. He said that Bryce had a "huge hernia" on the right side, and that he could "fit his thumb through it."

The anesthesiologist told us that Bryce would be receiving a spinal block (kind of like an epidural) for pain, and that he might need a little bit of narcotic as well. Given his history of apnea, Christie and I were squirming anxiously in our waiting room seats alongside a dozen other antsy parents. I've never thought of my wife as a particularly swift person, but when the nurse came 'round the corner with Bryce in tow, I think she may have crossed the intervening space faster than Usain Bolt.

The drugs must be doing their job, because Bryce is still sleeping soundly, despite the fact that he hasn't eaten since 2AM. Thankfully, he is breathing on his own (no vent!), and his vitals are great. The doctor said that they want to keep him for observation for at least 12 hours, but he did so well that they might release us later tonight. We're currently cooling our heels in recovery room limbo until a room becomes available; I'll post some pictures when we get settled later in the day.

ORIGINAL, 5AM: Well, more likely the OR waiting room, but I will try to post updates throughout the day. My first question for the doctor is: "Who decides that all children's surgeries should happen at 7AM?!"

Monday, December 14, 2009

Three months later

The first few weeks were a little rocky, but Bryce has risen to the challenge of life outside the NICU, and we are thrilled with how well he's been doing. For those who are keeping score at home, here's the quarterly rundown.

Feeding/Growth: Bryce has continued to thrive on the breastmilk and Elecare diet. He's doubled his weight since he came home (12.1 lbs today!), and his length has been increasing steadily (22" long). He's still on a mix of nursing/bottling (typically 4/3), and he almost always finishes an entire 4 oz. bottle of 24-calorie-per-ounce fortified breastmilk. His feeding problems are minor and steadily diminishing, though he still aspirates (chokes) an average of 1-2 times with every meal. He's still quite small for his adjusted age, but if you put him in a lineup with other three-month-olds, I don't think most people would finger him as a preemie.

Neurological: We think that Bryce is maturing, but since he can't communicate, gauging his progress is more art than science. The doctors ask us questions like "Does he recognize Mom and Dad?" or "Does he reach for things?", and we typically answer yes. However, as I lamented in an earlier post, it's hard to know whether those smiles for Daddy are actually a consequence of my presence, or simply a little bit of gas. That being said, he is more engaged with the world around him now. He's using his hands a lot more, he seems more excited when people interact with him, and I swear that he even laughed at me a few nights ago! Also, his pediatrician and therapists assure us that he's on the right track, so we're cautiously optimistic that any developmental delays will be on the mild end of the spectrum.

Ears: I'm not really sure what to think about Bryce's ears. There is no doubt that he can hear, but he failed three hearing tests before he finally passed one, so either the tests are about as reliable as Logan's electronic toys, or we're going to eventually learn that his hearing is functional but not quite perfect. We know that the cleft palate, which will eventually be repaired, can affect hearing, so we're hopeful that he'll outgrow any current problems.

Eyes: Yet another "wait and see." He has at least decent vision, which he regularly uses to charm Mommy, Daddy and even extended family by mirroring their smiles. He will track interesting toys in all directions, and even turns his head to follow especially exciting moving objects (big brother Logan, usually). We have noticed a few peculiarities with his eyes: one pupil is noticeably smaller than the other (just like Daddy!), and the corners of his eyes are very dark (consequence of the laser surgery?). More news on this early in the new year.

Lungs: Bryce's respiratory system has quickly risen to the top of the list of things that keep me awake at night, although in truth he's probably doing better than most babies who have their premature lungs ravaged by mechanical ventilation for six weeks. It's the reason why we'll be spending the holidays at home for the first time ever, and also the reason why I'm hesitant to take Logan out in public. I'm pretty sure that everyone who reads this blog knows that Bryce has been diagnosed with Chronic Lung Disease (also known as Bronchopulmonary Dysplasia), but it wasn't until the past few weeks that the damage became apparent to a medical layman such as myself. Recently, Bryce has become a lot more active: he enjoys sitting up and even standing. However, when he exerts himself, it doesn't take long before he starts panting and wheezing in a way that reminds me of an overweight smoker at the top of a long flight of stairs. The doctor listened to him this morning and said that we shouldn't worry as long as these episodes don't last several minutes, but I'm still a little concerned about what the future will hold, and I'm downright terrified of what might happen if he should catch pneumonia or RSV. If you're interested, the mother of a darling 3-yr-old micro-preemie recently wrote a fabulous piece on life with CLD/BPD; I highly recommend it.

He passed his pre-op appointment today with flying colors, so Bryce will be having surgery to repair his inguinal and umbilical hernias at the crack of dawn on Wednesday. Christie and I are both more than a little anxious, but we're trying hard to remind ourselves that he's conquered much more at a much younger age, and that we're entrusting him to some very capable hands. If you have any positive energy to spare, please keep Bryce in your thoughts and prayers on the 16th!

Thursday, December 10, 2009

Feeling feisty

Apparently, Bryce and Ralph (Logan's teddy bear) are not friends.

Tuesday, December 8, 2009

In his own words

Hi, this is Bryce. You'll have to pardon my Mommy and Daddy; they get a little emotional sometimes. Don't worry, I know what needs to get done, and I'm a real 'git r done' kind of guy. All those fancy pants doctors are always running around preaching doom and gloom, scaring my parents with whoppers like "Bryce can't hear!", and "Bryce can't see!", and even "Bryce's brain isn't growing!" HAH! We'll see about that.

Did you know that I weigh 11.6 pounds today? All that growing makes a guy mighty hungry, so I've been drinking 4 ounces of milk every 3 hours! I inherited a sensitive tummy from my Mommy, and sometimes I get a little cranky from all the rumbling and grumbling that goes on in there. On really bad days, I spit up a little bit of milk, and it goes through a hole in the top of my mouth and comes out my nose! That is not fun.

My Mommy is really nice. She rocks me when I can't sleep, and even gives me baby massages! We play lots of games; one of my favorites is hitting balls in the Bumbo. I can't quite sit up straight yet, and holding my head up tires me out, but I love to watch those balls roll around!

I like my Daddy too. He helps me stand up so that I can see everything that's going on around me. My legs are strong enough to support me, but I need Daddy's help to balance. Sometimes, I start breathing really hard when Daddy is playing with me, and he gets a little worried, but I don't think he should fret. Standing up is a lot of work for such a little guy!

I recently learned a fun new game. Mommy & Daddy think I've "discovered my hands." Pssht. As if I didn't know they were there. When Daddy's feeding me, I like to knock the bottle out of his hands when he's not paying attention. He doesn't think it's funny, but I think it's hilarious! One time, when Mommy was watching, I bopped myself right in the forehead with my hand, just to get a laugh out of her!

You know what I don't like? Cold wipes. My parents have this perfectly good wipe warmer in my bedroom, but every time I make a mess in my pants, they reach for those disposable wipe packages. It's bad enough that I have to suffer the indignity of someone else wiping my bum; you'd think they could at least use the warm wipes! It's almost like they're too lazy to walk up the stairs. What's up with that?

I have a big surgery coming up soon. On Wednesday the 16th, I'll be having my hernias repaired at Children's Hospital. I'm a little scared that they're going to put that nasty tube down my throat again, but the doctor says they're going to take real good care of me. I get to stay overnight with Mommy in my very own room at the hospital! I wonder if they'll have a TV with that Cars movie my brother loves so much. I like to sneak a peek at that one when Mommy and Daddy think I'm sleeping in the swing. SHHH! Don't tell.

Bye Bye!

Saturday, December 5, 2009

Was that a coo or a squeak?

When our older son Logan was born, Christie and I started religiously reading "Your Baby's First Year - week by week", and when the first year came to an end, we moved on to the next book in the series. Each week, we spent part of an evening learning about the behavior that would be expected from a "normal" child of that age, then set about convincing ourselves that our son fit into that category. Any time we discovered that, for instance, most 14-month-olds know six words, whereas Logan only knew five, we'd spend the next few weeks working to correct the shortcoming that we almost always attributed to our negligent parenting. Around his second birthday, I must've subconsciously arrived at the realization that this was a manifestation of ridiculous over-parenting, because I can't remember the last time I picked up one of those books, but I'm completely convinced that Logan couldn't possibly be a more normal 3-year-old.

Now that I'm an "experienced" parent, you'd think that I could relax and enjoy the mostly happy days of the past two months with Bryce. In spite of his unthinkably early arrival and all that it entailed, he seems to be doing great now. All of the doctors keep telling us that he looks awesome and that he's right on target for his adjusted age. However, I still find myself beset with anxiety; I really want to believe that he's going to beat the odds, but I keep waiting for the other shoe to drop. Did he really follow that toy with his eyes, or was it a fluke? Was he reaching for the ball, or just flailing his arms around? Was that a coo, or just a squeak?

In this case, the Internet is as much curse as blessing. I've had the opportunity to connect with dozens of other micro-preemie parents, and though this has been a great boon for my sanity, it also means that I've heard all too many stories about seemingly normal infancies followed by significant feeding and developmental issues in toddlerhood. The inevitably of some prematurity-related challenges seems to be a universal belief amongst those who've been down this road; as one parent so eloquently put it, "one simply can’t be exposed to extrauterine life at that gestation and not be marked for life from it."

So, every time we're told that he's passed another test or hit another milestone, I find myself wondering, if not this, then... what?

Thursday, December 3, 2009

Name that baby

Three photos of Logan and three photos of Bryce -- I wonder if the facial recognition feature in iPhoto could tell them apart. :)