Monday, August 31, 2009

Plugging along (97 days)

Every day, I wake up and hope that today will be the day we learn that Bryce will be coming home, and every day the answer is, "not yet." In a way, it feels a bit like waiting for a full-term baby to be born, except in this case, we know precisely what needs to happen: Bryce needs to mature enough so that he can take all his feedings orally.

When Bryce started nursing, the nurses estimated how much he'd eaten based on the duration of the feeding, but when his cleft palate was discovered, they started weighing him before and after each meal. Christie and I were dismayed to learn that the "full" (based on time) feedings of days gone by were actually only half that. The good news is that we've been moving in the right direction: on Saturday, he took more than half of his total milk volume by mouth, and yesterday he set new records for nursing (32 ml) and bottling (45 ml -- a full feeding).

In all other aspects, Bryce has been doing great. In spite of all the feeding difficulties, he has been gaining weight (5 lb., 10 oz.), and a little experimentation has proven that his earlier digestive problems were caused by the protein powder. His breathing support is still only a trickle, and the opthamologist said his eyes are steadily improving! I highly doubt that the happy homecoming will happen before the holiday weekend, but as for the following week.... stay tuned. :)

Thursday, August 27, 2009

Llama llama that's enough! (93 days)

I suspect most of our readers are unfamiliar with the "Llama Llama" series of children's books, but in one of the stories, the mother (Llama Mama) chastises the toddler (Llama Llama) after being frightened by his theatrical behavior. Although it is no fault of his own, I find myself equally exasperated with the constant barrage of minor dramas Bryce has been experiencing.

The latest brouhaha occurred this morning, when Bryce's occupational therapist stopped by to determine why he was struggling during bottle feedings. She identified a minor cleft palate (not to be confused with the commonly associated cleft lip) as the source of the trouble. When he's bottling, the milk doesn't always make it to the back of his throat; instead, it passes through a hole in the roof of his mouth and into his nose, which causes him to choke. As a consequence, Bryce will likely choke more frequently and have more reflux problems than an average preemie until he's old enough (about a year) to have the cleft surgically repaired.

As if that wasn't enough, the doctor also noticed that Bryce is "tongue tied", which means that the little piece of tissue (called the frenulum) that connects his tongue to the floor of his mouth is too short. Apparently, they're going to fix the problem tomorrow -- with a pair of scissors (*cringe*).

If you could bear to read this far, I've saved the day's good news for last. Bryce's breathing support has been pretty much as low as it can go (1/8L @ 21-25%) for the past couple days, and while the nurses were changing his clothes today, they forgot to reattach his nasal cannula to the spigot that provides the oxygen. For the next hour or so, Bryce was breathing completely unassisted, and no one noticed because his oxygen saturation was still 90% or higher! Go, twinkie!

Wednesday, August 26, 2009

Perspectives (92 days)

Three months today! The doctor called last night to say that she was "quite pleased" with Bryce; Christie and I echo that sentiment. Low breathing support (1/8L @ 21-25%), nursing/bottling at least four times per day, and growing steadily (5lb, 6oz).

In the past week, I've run across two stories that describe different aspects of the micro-preemie experience quite well. I'm feeling a bit reflective on this milestone day, so I thought it would be a good time to share them. Our more sensitive readers may want to skip this one -- I have a tendency to pull my punches when it comes to some of the realities.

The first is an article from yesterday's New York Times (thanks, Lisa). This may be hard to understand if you haven't spent much time in the NICU, but the part about the "war zone" really resonated with me. It is not a peaceful place -- the alarms keep us on edge constantly, and we've witnessed more than our fair share of violence, sickness and death. I have the utmost respect for our soldiers and I have no experience with combat, but I suspect that a micro-preemie is less likely to come home from the NICU than a soldier is to come home from the battlefield.

The second comes from another micro-preemie parent. Her experience mirrors our own in so many ways -- I've reproduced it below. The emphasis on the last paragraph was added by me. :)

The Preemie Experience
by Sandra D Moore

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s ultrasound,”
Or even “There is nothing we can do…”

It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…

It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!

It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.

It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.

It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,And you will love this child no matter what.

Monday, August 24, 2009

An 'A' for the day (90 days)

Bryce had his third follow-up eye exam this afternoon and the doctor said that he "gets an A for the day!" Both eyes look structurally sound, and the abnormal vessels have regressed significantly. Seventy percent of babies with Bryce's condition need multiple surgeries, and he'll be in the danger zone for another four weeks, but the doctor expressed optimism that Bryce will be in the minority. Better yet, she now thinks he has a 60% chance of having vision correctable to 20/60. Those are just educated guesses, of course, but we like the new numbers a lot better than the ones from three weeks ago. Most importantly, she said he does not need to remain in the hospital for his eyes; if he's ready to go home, we can bring him to her clinic for his follow-up exams. Only one hurdle left!

I've included a couple pics of Bryce's first bath with Mommy and Daddy below. We received a number of compliments on his stylish post-bath hairdo. ;-P

Sunday, August 23, 2009

All clear (89 days)

I'm far too exhausted to post a lengthy update, but I wanted to let everyone know that all of Bryce's tests came back negative, so he probably doesn't have an infection, and he's no longer in isolation. :) The current theory is that he may have a mild allergy, either to the protein powder they add to his milk (which has now been discontinued), or to something in Christie's diet. I couldn't help but guffaw when the doctor suggested that Christie might try a dairy-free diet, as that would eliminate one of her two food groups. :P

I guess the only other news is that feedings have been going well. He took roughly every other feeding by mouth over the weekend, and the choking episodes have been decreasing in frequency and severity, although he gave Christie a nasty scare this evening. Hopefully, he'll outgrow that nonsense before he comes home!

Friday, August 21, 2009

Milk monster (87 days)

Today, I find myself wondering if micro-preemie parents ever become desensitized to the constant emotional whiplash, or if I can expect to be perpetually strung out for the next ten years. Based on what I've read in blogs for older 24-weekers, I suspect it's the latter, but I'm still desperately clinging to the belief that Bryce will be different; in psychological circles, I believe it's referred to as the denial stage. ;-P

I suppose I may as well start with the bad news: as of this morning, Bryce is in "contact isolation", due to the fact that he's had unexplained loose/smelly stools for the past 24 hours. So far, his tests have all come back negative, and the doctor doesn't think it's serious, but it's still unnerving to watch the nurses gown up every time before they touch Bryce.

Thankfully, all the other news is mostly good. I think Bryce must be preparing to transform into a butterfly and fly away from the NICU, because our very hungry caterpillar has a seemingly insatiable appetite! Between Christie and I, we've been giving him up to three feedings a day by mouth (he got his first bottle on Wednesday), and to say Bryce is "enthusiastic" about feeding would be an understatement (see video). The lactation consultant suggested that if Bryce could nurse for 10 minutes, that would count as a full feeding; our little dairy king was still looking for more after 25 minutes! The only downside to his nursing prowess is that it means Christie is spending several hours each day at the hospital, which has made an already tight schedule feel barely manageable. Hopefully, this is the darkest hour before the dawn, and not a prelude of what's to come.

Tuesday, August 18, 2009

The little peanut gallery (84 days)

Two milestones today: five pounds (2.27kg!) and twelve weeks! Enjoy the show.

Mommy & Daddy like it when I conserve my calories

Yay! I love it when Daddy holds me ;P

*choke* I'm still getting used to this milk stuff

Snuggling with my Mommy after second lunch

I'm excited to see the world!

Monday, August 17, 2009

Mixed news Monday (83 days)

Christie and I dragged ourselves out of bed at five this morning and rushed to Bryce's side for what we anticipated would be a very important day. Clearly, we misjudged the significance of this follow-up exam; considering all the energy we expended agonizing over the outcome, the appointment was anticlimactic. The doctor breezed in, conducted the exam, shared her assessment and was out the door in a matter of minutes. She said Bryce's right eye looks really good; the abnormal vessels are regressing nicely. His left eye, on the other hand, is not responding as much, and requires further observation.

We were both thrilled that another operation is not warranted at this point, although I have to confess that I was a bit disappointed to be sentenced to another week of waiting. Based on his prognosis, it was unrealistic to hope that we'd get the "all clear", but it's hard not to wish for a miracle for a boy who's been through so much.

The good news is that Bryce will be 36(!) weeks corrected age tomorrow, and he's only an ounce shy of the 5 lb. mark. There's a lot of variance in micro-preemies, but Bryce's doctor said that most 24-weekers go home around 37-39 weeks corrected age. I'm virtually certain he won't be ready next week, but beyond that, it's up to Bryce. Place your bets now!

Saturday, August 15, 2009

He's *how* small? (81 days)

When people find out that we have a child in the NICU, one of the first questions I'm often asked is "how premature was he?" I usually answer "sixteen weeks" or "almost four months", and this rarely elicits a reaction. However, a common follow-up question is "how much did he weigh?" When I say "one and a quarter pounds", that's when I get the stunned looks and spontaneous exclamations of "whoa!"

Yesterday, when Christie and I were at the grocery store, we discovered a fun game that helps put things in perspective: hold a 20 oz. bottle of pop in one hand, and a full gallon of milk in the other. The pop weighs almost exactly as much as Bryce did when he was born, while the milk weighs as much as Logan did!

However, Bryce is working hard to catch up to his big brother! He weighs 4 lb., 11 oz. this morning, and has been gaining about half a pound each week. In fact, at this point, there are only two things standing between Bryce and a cozy crib in Lino Lakes: his inability to take all his feedings by mouth and his eyes.

Our nascent nurser is still a star -- as long as he can stay awake. He had another great feeding on Thursday, but Christie had to stay at the hospital through two of his meals, because he slept through the first attempt! Friday was even worse; Bryce snoozed through two back-to-back feedings, so he didn't get any nursing practice yesterday. The doc says this is typical behavior, and that Bryce just needs a little more time to mature. As far as the eyes are concerned, the verdict is scheduled for 6AM on Monday; I'll do my best to post an update as soon as we know. Meanwhile, we'll continue to enjoy the relative calm of parenting an "older" preemie.

UPDATE: Bryce had an outstanding Saturday -- two great feedings in the afternoon and this awesome pic that Mama snapped!

Wednesday, August 12, 2009

Milk moustache (78 days)

After 76 days of pumping for 30 minutes every three hours, Christie finally got to nurse Bryce on Tuesday. Personally, I think she deserves a medal; I doubt there are very many women who'd be willing to endure 300 hours on the Medela Symphony with no guarantee that she'd ever be able to breastfeed! However, our little champ was very appreciative! The lactation consultant was astonished that he did so well; on his first try, he nursed for several minutes without choking once! He didn't do quite as well today (choked twice), but it still looks like we might get lucky and Bryce will have a relatively easy transition to oral feeding.

I wish I could tell you that the kid looks great, but I haven't seen him since Monday evening. I put myself back in quarantine yesterday after Logan spiked a fever of 102; I'm pretty sure allergies aren't contagious, so I'm assuming I've got a cold. My symptoms are fading, so hopefully another good night's sleep will do the trick. Meanwhile, Christie has been improving with the camera, so you can see for yourself that he's happy and healthy.

On a side note, some of you may remember my prediction that Bryce would be a million-dollar baby. Well, it seems I underestimated badly -- we received the bill for Chloe's 26 day stay in the NICU (note that it's for room/board only). OUCH.

Monday, August 10, 2009

WHOA! (76 days)

What a difference a day makes! Bryce looked so good today that I was a little worried they'd accidentally switched him with another, very similar looking baby. He's way down on the breathing support: on a 1/4L of flow at 21-22% oxygen (21% is room air) he's been able to maintain oxygen saturation in the mid-90s. This bodes well for the condition of his lungs, which are often fragile in preemies due to the necessary evil of mechanical ventilation when the lungs are still developing.

Also, Bryce has dispelled any lingering doubts we had about whether he's aware of mealtimes, but if you don't believe me, just watch the video below. He is chomping at the bit to start nursing, and he's going to get his wish tomorrow at 2PM!

Sunday, August 9, 2009

Cautiously optimistic (75 days)

Bryce's eye doctor stopped by today for the first of his weekly follow-up exams. As of this morning, everything looks good: the healthy vessels appear to be growing, and the abnormal vessels seem to be receding. However, the doc told us last week that we'd have to wait two weeks before she could accurately assess the effect of the surgery, so we're hoping that we'll be able to announce unprecedented success next Sunday! ;P

Thanks to this miserable cold, I've been cheering Bryce on vicariously for the past three days. Christie has done a great job acting as my eyes and ears, although we've learned that photography is not her forte, so I'm afraid our readers will have to wait a couple more days for another glimpse of those increasingly chubby cheeks. Corrected age of 35 weeks on Tuesday -- nursing for real should start this week!

Friday, August 7, 2009

Back to boring (73 days)

Bryce is back to his regularly scheduled program of eating, sleeping and growing. He's just shy of 2 kg (4.4 pounds), and has been stable and healthy all week. As predicted, Christie and Bryce have started daily nursing dry runs. He definitely has the right idea, and even seems to be swallowing a drop or two, but he gets all tuckered out in a hurry. I'll wager that in a couple weeks, even the full-term babies will be jealous of Bryce's superior nursing skills.

The drama of the day is that Daddy woke up with a bit of a cough. Although Children's permits parents with minor respiratory ailments to visit provided they wear a mask, and I'm not entirely sure that it isn't just exhaustion, we know that a bug which provokes no more than a feeble cough in me could be life-threatening for Bryce. Thus, for the first day in Bryce's life, he'll be visited by only one of his parents; hopefully he won't hold it against me when he's reading this many years down the road. ;-)

So, I find myself waiting once again: for my immune system to kick into gear, for a positive follow-up eye exam on Sunday, and for our little mite to continue to build his might. With all the practice I've had over the past few months, you'd think I'd be better at by now.

Tuesday, August 4, 2009

I'm a big kid now! (70 days)

Bryce is moving up in the world! On Monday morning, they'd taken the top off his isolette, and he had no trouble maintaining his temperature (as long as he was well-swaddled), so on Monday afternoon he was transferred to his new home in the Infant Care Center (ICC). The ICC is a calmer, cozier and much more spacious unit for "healthy babies who just need a little time to grow before they're sent home." We were thrilled to hear Bryce described in this manner, and I think he was pretty excited about his new crib (see pic)!

Lest ye all get overly excited, I should remind our readers that Bryce can't come home until he can show consistent weight gain while nursing, and since he's still receiving all his feedings through a tube, that magical day is still (at least) a few weeks off. However, he has been gaining weight (4 lb., 2 oz. today), and assuming that Bryce is up to it, Christie will be able to start nursing any day now! He's been a bit lethargic since the surgery, but you can't really fault a guy for wanting a little shut-eye after enduring hundreds of laser strikes per eye; we're guessing he'll be back to his old mischief later this week.

Sunday, August 2, 2009

Catching some zzz's (68 days)

Bryce is resting comfortably after his 8AM surgery. The procedure took about an hour and a half, but he was sedated the entire time. There were no complications during the operation, but we won't know whether it had any positive effect for two weeks, and he won't be out of the woods until mid-September at the earliest.

They had to put him back on a ventilator to keep him breathing while he was anesthetized, but Children's uses a flexible ventilator tube that looks much more comfortable, and they'll switch him back to the nasal cannula when he's a little less groggy. The doc says he'll have a splitting headache when he comes around, which will likely be compounded by the fact that he hasn't eaten in nearly 12 hours, but otherwise he looks great. The topmost picture is before and the bottom is after.

UPDATE: After looking back on the weekend's posts, I realized that I had yet to share Bryce's formal diagnosis. For the more medically-inclined (or just curious), Bryce has stage 3, zone 1 aggressive posterior retinopathy of prematurity (APROP) plus disease/threshold. Also, several people have asked why they didn't catch this earlier. After doing some more reading, it seems that the aggressive variant of ROP (which Bryce has) does not follow the typical pattern of gradual degradation: instead, it rapidly transitions from normal vascularization to total retinal detachment. So, we're actually thankful that the opthamologist at UMMC caught it when she did!

Saturday, August 1, 2009

Shadows and light (67 days)

Bryce ventured out into the world for the first time at nine this morning. His trip was brief and uneventful, and he was snug in his new home at Children's Hospital shortly thereafter. We're still adjusting to the new surroundings; the faces are friendly but unfamiliar, while the facilities are reassuringly similar and yet also alien. We spent much of the day awkwardly bumbling around, although I'm sure we'll find our sea legs (or perhaps NICU legs) before too long.

Christie and I cringed at the sight of poor Bryce enduring his second eye exam of the past 24 hours, but we were both impressed with the retinologist, and very grateful that she cut her vacation short to see him. However, I'm sorry to say that Bryce was not the only one to shed a tear this afternoon. His prognosis is grim: the abnormal growth in his eyes is very severe, and even with prompt laser treatment, the odds of retinal detachment are 40-70%. Given his condition, she estimated that the odds of 20/60 or better corrected vision are only 40%. Also, our previous assumption that this would be a "one and done" surgery was incorrect: his eyes will need to be monitored closely for at least several more weeks, and he may require multiple treatments, so tomorrow's operation is just the first step of yet another journey.

Though it seems like a pretty dark day for Team Sonnek, we're trying to remain positive. Given the challenge we're facing, I believe that we've entrusted Bryce to the most capable hands available. The doctor seemed cautiously optimistic that Bryce would have some sort of functional vision, and if he was destined to face some medical trial related to his prematurity, we're glad it's one that isn't life-threatening. Even in the worst case, we know that blindness does not preclude one from experiencing a rich and meaningful life; coincidentally, Stevie Wonder's blindness was due to ROP. More importantly, we never know what tomorrow will bring; given all the amazing advances in biotechnology, little Bryce may put his old man's "hawk eyes" to shame a few years down the road. Go, twinkie!