Friday, July 31, 2009

A new perspective (66 days)

Yesterday, we were excited about the possibility of Bryce moving to a crib. Late this afternoon, we learned that Bryce will be moving to a new home, but it won't be a crib. In fact, it won't even be in this hospital. Early tomorrow morning, Bryce will be transferred to Children's Hospital in Minneapolis.

It all started this morning when the opthamologist stopped by for Bryce's routine eye checkup. Based on her exam, she diagnosed him with stage 3 retinopathy of prematurity (ROP). ROP, which occurs in 80% of preemies born before 26 weeks, is an abnormality in the growth of blood vessels within the eye. In severe cases, it can lead to detachment of the retina, which usually causes blindness.

Late Friday afternoon, one of the doctors who specializes in disorders of the retina (a retinologist) dropped by to examine Bryce. His findings were heartbreaking: Bryce's ROP is very serious, and without immediate surgery, he will almost certainly go blind. The retinologist who examined Bryce did not feel comfortable performing this delicate operation, so our teensy tot is going to be transferred a few miles down the road, where he'll be placed in the care of one of the world's finest retinologists.

Obviously, this abrupt change has rocked our little 'home' in the NICU. Although we've heard very good things about Children's, and we want him to receive the best possible care for his eyes, we're very anxious about leaving behind the familiar people and places at UMMC. We're not all that eager to embark on yet another new adventure, and I get the sense that many of the staff here will miss us too.

Things are still very uncertain right now, but it sounds like Bryce's surgery will happen early tomorrow afternoon. I'll try to post updates over the weekend when I have more information; if you happen to read this before then, please keep Bryce in your thoughts and prayers on Saturday!

Thursday, July 30, 2009

Sleeping in style (65 days)

One of the first things that Logan said upon meeting his baby brother was "funny bed, has roof." Bryce must have inherited some of his father's sensitivity, because ever since then, he's been determined to show the nurses that he's ready to move up to the open-air model. This morning, the temperature on Bryce's isolette was set at a balmy 28 degrees Celsius; if he can maintain a healthy body temperature at this setting for the next three days, they'll try moving him to a crib. If all goes well, the incubator we've been huddling around for the past two months (see pic) may be relegated to the pages of Bryce's scrapbook.

As far as the NICU is concerned, Bryce has been a superstar all week. His weight this morning was 1670g (3lb, 11oz), and his weekly labs were all right on target. He's still scaring Mommy and Daddy half to death with the occasional heart rate drop or oxygen desaturation, and we were dismayed to learn that our poor little guy has a hernia, but the medical team assures us that this is business as usual for a baby whose corrected age is negative seven weeks. In my heart, I believe that Bryce is going to come home, and my head says "it'll be fine, just cherish each day with him", but I'm still fairly certain that those two gray hairs on the left side weren't there earlier this year.

Tuesday, July 28, 2009

Cause for celebration (63 days)

Bryce's long-term followers may recall that about a week after birth, Bryce was diagnosed with a moderate (grade 2) intraventricular hemorrhage (IVH) on the left side of his brain. Christie and I were extremely concerned, because we knew that this condition had the potential to damage Bryce's brain in several different ways. Fortunately, subsequent examinations at week two and three showed that Bryce's hemorrhage was not getting any worse, and actually seemed to be resolving. So, the doctor told us that they would follow-up at some later date to check for potential complications caused by IVH.

As it turns out, that later date was yesterday, and we could not have asked for a better outcome. The examination showed no trace of the prior hemorrhage nor any evidence of the scary conditions commonly associated with IVH: hydrocephalus (i.e., enlargement of the ventricles) and periventricular leukomalacia . Better yet, the examiner found no signs of any congenital brain malformation, so Bryce is still on track for his Ivy League education. The word "thankful" seems insufficient to describe how Mommy and Daddy felt about this very welcome news.

Sunday, July 26, 2009

Where's my cake? (2 months!)

Poor Bryce will have to be pardoned for the dubious looks (see pic) he gave Mom and Dad after learning that the NICU would be celebrating his two-month birthday with a "gift" of three vaccine shots. Christie and I were equally nervous; he still seems awfully little, but we relented after the nurse, nurse practitioner and neonatologist each assured us that this is a good thing. As the doctor put it, "you don't want your preemie catching pertussis."

He's back on track after Friday's drama, and his weight gain over the weekend has been modest, which means he's probably clearing out that extra fluid and replacing it with some healthy baby chub. At 3.5 pounds, Bryce is almost certainly the smallest two-month old baby we'll ever meet, but he makes up for his lack of stature with a hero's spirit and verve. Bryce was especially energetic after his transfusion, and his weekend antics provided Mom and Dad with some greatly appreciated comic relief.

Three of Bryce's roommates graduated to the "west wing", where stable babies room-in with their parents for several days before moving home. Though we're thrilled for their parents, it's somewhat disheartening to watch other families come and go; it's quite possible that Bryce is now the oldest baby in the NICU. On the bright side, one of the babies who moved out was a fellow 24-weeker born 3 weeks before Bryce. Though each preemie's journey is different, and we're painfully aware that life can change in an instant, we're starting to feel like maybe there's a hint of light at the end of this tunnel.

Friday, July 24, 2009

Still a preemie (59 days)

It seems that perfection is fleeting. When I walked into the NICU early Friday morning, Bryce's nurse told me that he'd gained more than two ounces overnight. My first thought was "uh oh, that can't be all good weight; he must be retaining fluid." About an hour later, my fears were confirmed when Bryce reminded us that he is still a preemie by suffering one of his worst spells to date. Shortly after we removed him from his isolette, his breathing became labored, and his oxygen saturation plummeted to 30-50%. It required significant intervention from Bryce's nurse to get him back into a healthy range, and the anxious onlookers (Mom, Dad, Great Grandma and Great Grandpa) were all feeling pretty strung out by the time the rosy pink flush returned to his cheeks.

The nurse practitioner stopped by for a quick exam a few minutes later, and no one was surprised to hear that Bryce's lungs sounded "wet." When preemies retain fluid, it has a tendency to collect in their lungs, which makes it more difficult to breathe. Thankfully, Bryce isn't exhibiting any symptoms of infection; however, watching your child turn blue and gasp for air for several minutes will ruin any parent's day. I won't bore you with all the medical details, but they decided to increase his caffeine dose (yes, he's already an addict) to encourage regular breathing and to give him a blood transfusion, which will indirectly dry out his lungs by helping his kidneys to expel more fluid.

Later in the afternoon, he was doing much better, so the caffeine-spiked blood must have done the trick. I'm pretty sure my son is not a half-vampire, but given Christie's insatiable appetite for those Twilight books, perhaps I should be concerned...

Thursday, July 23, 2009

A happy place (58 days)

The past few days have been blessedly quiet. Bryce's feedings have been steadily increasing (up to 30 ml tri-hourly), and he's responded by sprouting like a weed. Our brawny little boy gained 30-50 grams per day during the past six days, and he weighs just over 1500 grams (3.3 pounds) this morning. If he stays healthy, it's entirely possible that Bryce could hit six pounds in only six short weeks. Go, twinkie!

On Monday, Christie was pleasantly surprised when the medical team asked if she'd like to try nursing Bryce! No one was expecting him to actually feed by mouth yet, but they decided that he's ready to practice putting his oral fixation to good use. Bryce's reaction was par for the course: he eventually got a mouthful of milk, choked on it, stopped breathing, and they called it a day. :) Nevertheless, Christie was ecstatic, and they'll continue to practice over the coming weeks.

Medically, Bryce has never been better. In fact, during rounds this morning, the doctors reviewed all of Bryce's vital signs (as they do every day), and for the first time ever, their plan is to do nothing. No tweaks, no adjustments, no weaning -- nothing. He's perfect just the way that he is. ;)

Sunday, July 19, 2009

Three pounds! (54 days)

TSIA (Title Says It All)

Seriously, the days are starting to blend together. Bryce's routine goes something like this: (1) eat (2) sleep (3) stop breathing (4) wake up (5) poop (6) back to step 1. It's almost like he's a real baby! Now we just need him to get a little bigger so we can eliminate step 3. :)

Friday, July 17, 2009

Wacky Wednesdays (52 days)

My offhand comment about "suck, swallow, breathe" being a challenge turned out to be prophetic. They're still delivering his milk through a tube, but like many preemies, Bryce suffers from reflux: sometimes, his body decides to send the milk in the wrong direction (back up into his mouth)! When this happens, Bryce gets confused, and occasionally forgets to keep breathing. On Wednesday, while Christie was holding him, he had a couple of particularly bad spells: his oxygen sats and heart rate plunged, and he started to turn blue. Fortunately, the nurses were able to correct the problem in a matter of seconds by tickling his feet and (very gently) shaking him, which reminds him to breathe, but poor Christie was scared out of her wits. As I said earlier, this is a very common problem in preemies, and the doctors have prevented any serious relapses (so far) by stretching his feedings over a longer time, but we once again find ourselves anxiously waiting for Bryce to outgrow the status quo.

Thankfully, he has been happy to comply with our wishes. Bryce's growth has been slow, but he's up to 2 lbs., 13 oz. this morning, and he looks a little more like a full-term baby with each passing day. His hair is getting thicker, and has a tendency to puff up hilariously after his weekly baths. Bryce is getting thicker, too: those protruding ribs are a thing of the past, and a nurse joked that he'll have a healthy double chin in no time. We'll cherish every added ounce. :) We couldn't choose just one or two, so I've thrown up a panoply of pictures for your weekend amusement.

UPDATE: Christie and I were looking back at old pictures, and even we were stunned to see how far we've come since Wednesday, May 27th. For comparison, here's a pic of Bryce at one day old.

Tuesday, July 14, 2009

Halfway home (49 days)

Bryce continues to make great strides in his journey of growth and development. His weight is slowly but steadily increasing, while his need for breathing support is moving in the opposite direction. They changed him to an even smaller nasal cannula today, and he's within striking distance of completely independent breathing. He's still doing great on the all-milk feedings, and they've started fortifying his meals with the preemie equivalent of protein powder to help him pack on the ounces.

If you've been reading the blog for a while, you may recall that in a moment of weakness, I lamented the absence of common experiences associated with a new child. In the past few days, Bryce has been making up for lost time: Daddy has now been pooped on, spit-up on, and had his ears set ablaze after Bryce pierced the relative calm of Nursery One with a series of hearty wails. Careful what you wish for. :)

Recently, several people have asked when Bryce will come home, and he's been doing so well that I found myself wondering the same thing. When the twins were admitted, they gave us a list of four milestones that are used to determine when babies are ready for discharge. They are: (1) is able to maintain a normal breathing pattern (2) is able to maintain their temperature in an open crib (3) is taking all his/her feedings by mouth and (4) is gaining weight consistently. Of these four, #3 will likely be the biggest challenge for Bryce; apparently, "suck, swallow, breathe" isn't as easy as it sounds. Bryce's primary nurse said most preemies go home between 36 and 40 weeks gestational age (he would have been 31 today), so I'm guessing that we're right around halfway there! May 26th seems like it happened both a moment and a lifetime ago; today, it feels like a joyful September 1st is just around the corner.

Saturday, July 11, 2009

Twice as nice (46 days)

Bryce has doubled his birth weight! He weighed 1150 grams (just over 2.5 lbs) this morning, and since he's currently gulping down 12 ml of milk every two hours, we're sure he crossed 1160 grams (he weighed 580 at birth) at some point today. For a two and a half pounder, 12-13 ml of milk is a "full" feeding, so they're going to stop his IV nutrition. Christie and I were especially excited to hear this, because all of his remaining medications can be supplied orally, which means that for the first time in his life, Bryce will not have any intravenous lines!

Our little champ is exhibiting several very promising signs of maturity. As shown in Thursday's video, he has a very strong suck for a baby with a corrected gestational age of only 30 weeks. He's also been demonstrating signs of hunger when his feedings are late, and he's doing great with the breathing -- they reduced the settings on his nasal cannula this morning, and he's typically on "room air" (no extra oxygen). I'm also proud to say that our son is drug-free: he received his last dose of narcotics five days ago, and the neonatologist said that he hasn't shown any signs of withdrawal yet, so he's officially "clean."

In the past few days, it's become clear that the medical team shares our optimism about Bryce. Many doctors and nurses have stopped by to congratulate us on how well he's doing. Also, the nurses have started to explain certain aspects of Bryce's future care, such as what to expect when he goes home. In fact, one of the nurses said "now he just needs to get bigger!" We know the next eight weeks probably won't be all sunshine and rainbows, but Christie and I were feeling especially lighthearted when we left the NICU today.

Thursday, July 9, 2009

Short and sweet (44 days)

They switched Bryce to the nasal cannula this morning! Mommy and Daddy were very excited, and our burgeoning baby boy showed his appreciation by having a fabulous day! I've added a couple new pics and a video for your enjoyment. :)

Wednesday, July 8, 2009

A parental conundrum (43 days)

This morning, Christie and I found ourselves confronted with yet another instance of conflicting priorities. Bryce's new breathing apparatus, called a CPAP, can be configured to provide him with a certain number (called the "rate") of mechanical breaths each minute. The mechanical breaths supplement his regular breathing -- the goal is to get him to a rate of 0, at which time he'll be switched to a less-intrusive apparatus called a nasal cannula.

Early this week, Bryce was doing great on the CPAP with a low rate, so yesterday they turned the rate to 0. He did okay with the new settings, but had a bad spell this morning, so they decided to turn the rate back on, which basically means he isn't quite ready for the nasal cannula. Unfortunately, Bryce is not a big fan of having two hard plastic CPAP prongs shoved up his nose, so he squirms around a lot, which is causing his poor little nose to get inflamed. Over time, too much chafing can cause serious injury, so they'll be forced to switch him to either the nasal cannula (which he isn't ready for) or back to the mechanical ventilator (which damages his lungs) if he doesn't calm down.

The good news is that whenever Christie or I stand at his bedside and gently cradle him with both hands, he stops squirming and his vital signs improve. So, it seems that he's fine with the CPAP, as long as either Mommy or Daddy is holding him. Practical concerns such as eating and sleeping aside, I doubt I need to explain why the ideal solution of "one parent at Bryce's side all day and night" is difficult to implement when you have careers and a toddler clamoring for your attention. Nevertheless, I gladly spent seven hours with Bryce today, and Christie and I are busy devising plans for Thursday and Friday which maximize parental bedside time. Meanwhile, we're hoping that he'll grow out of this stage shortly.

Other than that, the kid looks great. He's doing very well on his feedings, which are up to 6 ml every two hours, and he currently weighs in at a hefty 2.4 lbs. His cries are getting stronger, and they've weaned him off the narcotics, which means he spends a lot more time interacting with Mom and Dad. Watching your micropreemie grow from outside the isolette is all well and good, but feeling his tiny fingers close around yours is downright magical.

And so ends another day in the life of a preemie parent! Hopefully, better (or at least more relaxed) days are ahead. :) Our sincerest thanks to everyone who has supported us through the trials of the past few weeks, whether directly or indirectly -- Christie and I were touched by your cards, gifts and generous donations to the March of Dimes. We'd especially like to thank our babysitting squad and the angel that left the 'My Little Pony' at Chloe's graveside; it made our day.

Sunday, July 5, 2009

Surprise! (39 days)

While most of the nation was out watching fireworks, Christie and I witnessed a different kind of spectacle. Bryce was extubated at 9:35pm last night, and he greeted the world with a whimper. His cries are barely audible, but they're more than enough to melt Mom and Dad's hearts. I've posted the "before" shots above, and the "after" shots below.

He currently has a CPAP (continuous positive airway pressure) tube in his nose, which can be used to give him breaths if he needs it. If he does well with the CPAP, they'll switch him to a nasal cannula, which supplies extra oxygen only, as early as tonight.

As of Sunday morning, Bryce was doing wonderful, but he was none too happy to begin with. As shown in the video below, our "wimpy white boy" has no shortage of spunk when he's displeased.

UPDATE: Click here for Bryce's first audio production. Yes, that really is his all-out I'm-mad-as-heck cry. :)

Friday, July 3, 2009

The next stage (38 days)

It is becoming difficult to distinguish our "micropreemie" from his older neighbors in the NICU. Bryce is still quite a bit smaller (weight hovering around 1 kg, or 2.2 lbs), but he has made great strides in terms of his physiology. He needs very little ventilator support, and he's usually breathing room air. Bryce's episodes of hypoxemia (low oxygen saturation) and hypotension (low blood pressure), which occurred constantly until roughly a week ago, have become all but non-existent, and he's down to a pair of medications in regularly decreasing doses. Comparing his condition today with last Friday is mind-boggling: he really does seem like an entirely different baby.

The exciting news of the day is that Bryce is scheduled for extubation sometime on Monday, and the medical team is optimistic that he'll be off the ventilator for good. That means that in less than 72 hours, those phantom cries might become the real deal!

The scary news is that his feedings are going well, so they've moved him up to 3 ml of milk every two hours. Of course we're happy that he's eating, as it will help him to grow, but like the surfer who's been bitten by a shark, we find ourselves less than eager to jump back into the water. Unfortunately, not eating has its own risks, and eventually we're going to have to give our little boy a chance to prove that he can swim. Thankfully, the medical team has been very sympathetic to our concerns in this regard, so they're progressing cautiously and monitoring Bryce's condition closely.

So, we wait with bated breath, hoping and praying that our readers will come back from a pleasant holiday weekend to find us snuggling a baby boy who is breathing on his own and passing milk through his bowels with the greatest of ease.

Wednesday, July 1, 2009

Drowsy summer days (36 days)

Bryce has been remarkably boring the past two days. This afternoon, I stood at his bedside for nearly an hour before his nurse even entered the room! His vitals have been great, and the only changes to his care have been slow weaning of his ventilator and narcotics. Though Christie and I fear we are being lulled into complacency, we're enjoying the "good days."

Since I don't have anything more interesting to share (except for the awesome picture of Bryce), here are some fun numbers that may lead you to think twice before opting to skimp on health insurance:

50 : Number of consecutive days we've visited or stayed in the hospital
$54,000 : Cost of Christie's two-week hospital stay (room & board)
100 : Average NICU stay, in days, for baby born at 24 weeks
$10,000 : Estimated cost, per day, of NICU care
$1,000,000 : Bryce's tab in September

He's totally worth it. ;)