Audacious Hope

We hear the cynics. We travel a treacherous road. We foresee tough days, but emerge heads high, countering fears with strength, resolve and optimism.

We're talking, of course, about Hope's weight. She has finally, officially, surpassed the 10 lbs. barrier, weighing in at the doctor the other day at 10 lbs. 4 oz. For those keeping track at home, that's 15 oz in about five weeks, a nice spurt for someone who took four months to gain 1 lb over the summer.

After much experimentation, heated coconut oil and carefully calibrated concoctions, we've switched from formula to Pediasure, which has about 6 calories more an ounce. Plus it tastes awesome, like a warm malted milkshake, rather than the diluted puke water that was her staple.

And like Mom's old saying about watched kettles, we've given up religiously weighing Hope every week, holding our breath as the numbers moved, and then exhaling in frustration in disappointment. We still fret about her weight, and are meeting soon with a pediatric endocrinologist to determine whether hormone therapy would help.


But today, we're happy and hopeful. That other thing that happened yesterday was pretty cool, too.

Updates galore

In newspapers, you get blamed sometimes for failing to follow through.

Big splash on the front page: "THIS GUY IS A DIRTBAG!" Then, nine months later, the case winds its way through the machinations, memories fade, the news trudges forward, more scandalous dirtbags emerge, follow-ups get fewer and farther between until -- woopsie daisy -- a blurb is printed on page 43B reading: "Allegations of alleged dirtbaggery allegedly could be unfounded, prosecutors allege."

Critics call it a conspiracy by dirtbag newspapers to rake muck. I say it's human nature: Crises and scandal always get more attention than process, minutia and murky outcomes. When the answers aren't always clear-cut or better than you initially feared, it's even easier to forget the initial problem.

This blog is no exception. In that vein, here's some answers to issues that no longer loom as large as they did a few months ago and some that do.

The spitting of blood: Once a weekly nuisance, it's faded considerably in the past few months but hasn't disappeared. For about two months this summer, Hope would wake up crying. We'd rush into her nursery and see her laying next to a pool of dried blood. We did two endoscopies to pinpoint the problem.

Old pal Dr. Spitenup concluded it stems from her hernia and stomach rubbing against her esophagus. His solution: Well, it stinks, but it doesn't bother her, so live with it. We investigated on our own and believe it was exacerbated by supplemental oxygen fed through her nose as she slept. We have a good friend with cystic fibrosis who uses oxygen. She reasoned that the oxygen dries out her nasal passages, leading to blood that Hope swallows, and then eventually spits up.

We stopped using the oxygen at night. Viola. No more blood twice a week. But the issue persists. A few weeks ago, Hope awoke coated in a mammoth pool of blood so old it was black. We think it was from the rubbing of the hernia.

The eyesight: Six months ago, Hope's eyesight was tested as a matter of routine. The opthamalogist, a kindly, geriatric fellow who inhabits a wood-paneled office that looks like a hunting lodge and I'll call Dr. Speakupsonny, found that Hope was extremely near-sighted and would need glasses when she turned 1. We were crushed. We always thought that, given her hearing issues, it was highly unfair she'd have to wear hearing aids and glasses.

We had a follow-up appointment on Election Day. Dr. Speakupsonny found that her vision has improved, but she'll probably still eventually need glasses. We return to the hunting lodge in six months.

The laryngomalacia: Hope wheezes when she breathes because her larynx is floppy. It's a fairly common, and mostly benign, condition that most kids outgrow by about eight months. She hasn't. That's probably because she is so small. At the rate she's growing, it could be an issue for another 2-3 years. This remains a cause of concern because she could have a very difficult time breathing if she catches a bad cold. Once again, this year, she is having the monthly Synagis shot, the uber-expensive shot to ward off RSV (a respiratory virus) that is recommended for preemies. Dr. Frosty also worries that she's expending so many calories breathing that Hope has a harder time gaining weight. There is a surgery to correct the issue. We are exploring it.

The teeth: Six months ago, I foolishly wrote a blog item proclaiming that Hope was teething. She still could be. But there is little evidence of it. Children with CdLS take forever to cut a tooth. The tooth fairy got tired of waiting by the door, checking her watch and tapping her feet, and was last seen speeding away in a used K Car, listening to, of all things, "'99 Luft Balloons."

The heart: Learning my lesson from the teeth, I am declining substantial comment. For about two months, soon after her birth, this was our biggest concern about Hope. Six months ago, we were told the situation looks good. We have another follow-up appointment soon. I ain't saying another word.

The Dice-K: For weeks, Hope's favorite friend in God's green Earth was a teddy bear of Red Sox pitcher Daisuke Matsuzaka, also known in this age of lackluster nicknames as Dice-K. Lulu ate the doll. My sister faithfully mailed a duplicate. Alas, love is fleeting at a tender age and Hope's affections have wandered. Her new love: Big plastic cow on wheels.

The cutie: I am doing fine, thank you very much. And Hope is getting cuter by the day.

Small side of tiny

One year into raising a special-needs child, we're realizing the worries never go away. Sometimes, they're more prominent than others. Sometimes, they rotate. But they're always lurking, ready to leap up, grab your lapel and say, "don't get so comfortable."

We're still not sure what to do about Hope's weight. She's about 9 pounds at 12 1/2 months and is stubbornly clinging to the 10-15 percentile in the CdLS growth chart. It's a chart that is heavily skewed toward small, so she is on the small side of tiny.

So far, we've erred toward caution and non-intervention because her height and weight are proportional. But the experimentation never stops. Eager to squeeze in a few more calories with every feeding, we've added coconut oil, butter, heavier formula, and myriad combinations in between. Our kitchen sometimes resembles a mad scientist's lab, with carefully calibrated concoctions prepared with blenders, heated, then cooled oil and syringes. This week, we're beginning to try to wean her onto Pediasure, a calorie-rich milk substitute that tastes a lot like rich, chocolatey Ovaltine.

Often, the experimentation works. Others, no. The frustration comes with the vicissitudes. For weeks, Hope will eat like a linebacker, devouring bottles and fruit with frightening relish. Then there are stretches like last week: Little interest. frequent spitups and tiny triumphs if she finishes half a bottle.

Few variables change to explain why she's just not digging her chow. So we fret and obsess. Is she constipated? Did we feed her too much chicken? Is she dehydrated? How much did that diaper weigh? Should we cut back on the oil, sacrificing a few calories in the hopes that she might make up for it by drinking more formula?

There may not be an easy answer. It's a common issue for those with CdLS. The metabolisms are lightning quick. The appetites come and go. The digestive systems are problematic.

Dr. Spitenup encourages the long view: Slow and steady gains, without getting caught up the daily fluctuations. But that's often easier said than done. So we ponder, second-guess and hope for the best.

Meanwhile, we're happily watching her blossom as a boom, boom, lickety-split player. We finally were able to capture the elusive prey at play on the exersaucer. Usually, she freezes the moment a camera emerges, but we got lucky.

New tricks

It's 10 a.m. on Sunday, and these are the moments that make me smile. Hope is in a strange contraption known as an exersaucer. It's a big gizmo toy companies created after parents sued the bejesus out of them for baby walkers: Round, orange and plastic, it has a seat in the middle and allows Hope to spin around 360 degrees and monkey with about 10 gadgets.

And does she ever. Round and round, laughing and giggling, Hope twirls from one station to the next.

First it's the big apple on a stick thing. Thwack, thwack, thwack. What could be better? It sways. It's red! Oh life is a joy!

Ten seconds later: Hey, what is this? Big plastic bones that make woof, woof sounds and spin? Twirl, twirl, twirl. Life couldn't possibly get any better, until ...

Be still my heart! It's a green car that goes beep, beep! Tee hee, hee!

And on it goes for about 30 minutes. Hope forgets that we exist. Few are so serious about play. She breathes heavy. She shakes her head. She stares intently at a blue walkie-talkie thing. It has buttons! Wow!

We've tried to capture the frenzy on film, but Hope is an elusive prey. As soon as the camera is produced, the wonder of the exersaucer ceases. She becomes transfixed and stares intently at the camera.

Perhaps we'll have do go the 20/20 hidden camera route and catch her in the act like the butcher flicking cigarette butts onto a flank steak.

It's a sight to behold. Not the butcher. That's gross.

Hope is doing some great stuff for a nearly-9 pounder. She's getting closer by the day to sitting on her own. Yesterday, she made it for 30 seconds before tipping over. This morning, she began banging her binkie on the table like Krushchev at the United Nations.

She has a new stunt that involves vigorously shaking her head, as though she was asked if the Detroit Lions would ever win a football game.

Here's a peek into her evolving repertoire.

Best for Hope

From the Department of "Damn Irony, How Could You Be So Fickle": Two people who've never been known to pass up a brownie are raising a girl who can't put on weight no matter how hard we try.

It'd be funny if it weren't so worrisome.

Over the past few months, Hope has fallen off her own slow-but-sure growth curve of about 2 ounces a week or 1 pound every two months. It wasn't ideal, but it remained consistent since she was in utero, allaying concerns with the knowledge that she's humming along at her own slow course.

But Hope has remained at 8 pounds, 4 ounces for three weeks and gained 1 pound in about 3 months. We stuff her with prunes, oatmeal, sweet potatoes, carrots, boring stories and silly songs. We re-institute the 4 a.m. feeding we were so relieved to forfeit.

Zippo. No matter what we do, the scale doesn't move.

We're rapidly approaching the point where intervention may be necessary. Dr. Spitenup, who is as conservative as they come, first floated the idea of a fundoplication and G-tube surgery about two weeks ago.

The procedure would close off the upper part of the stomach to thwart acids from coming back up and install a feeding tube into her stomach to allow us to continually pump her with calories while she's sleeping.

We can't say we were surprised. But we were saddened. Feeding tubes are fairly common among those with CdLS, and Hope's lack of one was a point of pride that we perhaps naively interpreted as a good sign.

But after a while, you realize your pride isn't doing her any favors. Her inability to pack on pounds no doubt further hinders her development. She still hasn't sat up, perhaps because she's not large enough. The more we feed her, the more she vomits -- helping no one except our disgusting dog, Lulu, who ranks vomit as No. 3 on her favorite foods behind soiled diapers and dirty socks.

So we've come to accept that a feeding tube not only is a good idea, but we need to start moving on it quickly for Hope's sake. It would supplement -- but not replace -- normal feeds, and countless CdlS kids have thrived with them.

When Hope was born, her Grandma Clem said we'd have to throw away our expectations. She was right, but so much of this year has also been about learning to move behind our pride to do what's best for Hope.

Milestones

Milestones abound.

Hope. who is a few weeks shy of 8 months, finally is the size of an average newborn: 7 1/2 pounds, plus a few extra ounces for bragging rights. We're still hoping to hit 10 lbs. by one year, which would continue the 2 oz. per week weight gain she's maintained since she was in utero.

So far, Spitenup and company are happy with her progress. Many CdLS kids don't really pack on the pounds until they have surgery to install feeding tubes -- and even then it's slow sledding -- but since she's held firm to her growth curve, that possibility hasn't arisen.

The bad news: She may never be tall enough to ride the Millennium Force at Cedar Point. The good: We can probably sneak her into the movies with a children's ticket for a few extra years.

Last week, the blog passed its 10,000 hit since I began keeping track in December. Yes, I am a loser. Thanks to all who've peeked in from 35 nations and 46 states. Thanks for nothing, North and South Dakota. Seriously, we appreciate all the support, are happy we've connected to CdLS families and are humbled so many seem to care.

Six months

Somehow, this week, amid my tirade against insurance, I neglected a key piece of news: Hopesy is six months old.

In some ways, it seems like it's gong by quickly. In others, not so much. But our days are significantly richer and more joyous because she's part of them. Hope is doing good things: Grabbing items with both hands, becoming more vigorous about wanting objects (and upset when they're taken away), rolling from her back to stomach, gaining trunk control, eating like a champ and pip-pip-pipping away.

Hope cracked the 7 lb. barrier a few days after her six-month birthday, following the same slow, steady 2 oz. per week weight gain she began in utero. At this rate, she'll be 10 pounds in a year, which puts her smack in the middle of the CdLS growth chart.

The happy, happy Hopey we know and love has returned after a sour turn following the ear-tube surgery. So life is good.

Breakthrough

Change doesn't come easy around these parts. I lived like a college student until I was about 32. Mo still thinks Madonna is cool. And Hope has steadfastly clung to being a 4-pound baby.

For days, we've eagerly weighed her, hoping she would break into into the ranks of the 5-pounders. For days, the digital scale atop her dresser stubbornly read 4 lbs, 15 oz.

Even with our sundry doctors appointments, Hope's biggest issue day-in, day-out is feeding. On paper, it should take about 8 hours of the day. In reality, it's a round-the-clock gig. Every three hours, she gets about 1 1/2 ounces for a solid day of 12 ounces -- the equivalent of a can of Diet Pepsi that we gulp in 5 minutes. Sometimes, we cajole more. Usually, she's not having it.

It takes about 30 minutes of burping, cooing, tickling and soothing to get it down. That's followed by another 30 minutes of holding her upright and playing with her to ensure it doesn't all come back up. Theoretically, it's off to bed before the process repeats. But often, it's back to bed for 15 minutes, wakey-wakey "Me so mad!" for another 15, more cooing and soothing, then back to bed.

So we were happy today when the scale hit 5 pounds. For those keeping track at home, that's 17 ounces in the 80 days since her birth and 18 ounces in the 64 days since she left the hospital (she lost some weight.) That's about 2 ounces a week, which at this rate will have her on Jenny Craig in about 72 years.

Seriously, we're happy to hit this milestone. It's going to be slow going. We know that. We'd just like to jump-start the process a bit to make it easier, so it's back to Dr. Spitenup on Thursday to discuss our options and her progress.

Another in the ranks of Team Hope

Classic good news/other news today at the pediatrician: Hope's weight is proportional for her length. She's tipping the scales now at 4 pounds, 10 ounces and is almost 18 inches long. That might not seem like much, but it's progress: After eight weeks, she's officially outgrown her first outfit. It's a preemie outfit but an outfit nonetheless.

The flip side is that our pediatrician, whom we like, agrees that it could be time to start exploring supplements in hopes of jump-starting some weight gain. And rather than simply prescribe them, he's referred us to a yet another player in Team Hope: A nutritionist.

Already comprised of a pediatrician, geneticist, cardiologist, ear-nose-throat specialist, gastro-intestinal doctor and occupational therapist, Hope's network of providers is beginning to rival the Army of Carthage.

Frankly, it's an enormous weight that falls squarely on Mo's shoulders. After 2 months, Hope's care is now detailed over about 4 files and spreading into a fifth. Navigating the labyrinth of referrals, specialists, insurance, supplemental insurance and the like is dizzying and can become a full-time job. As most who've dealt with doctors and insurance can attest, little can usually be accomplished in one phone call and seemingly simple tasks become Goldberg-esque. Maureen is one hell of a reporter and an adept problem solver, but acknowledges it's maddening. Today, she made about six phone calls to find one nutritionist.

It's all very annoying and can become discouraging. Then Hope does something really cool, like today. After driving alone to the pediatrician for the first time -- and white-knuckling it all the way, I'm sure -- Mo reports that she was in the examining room, minding her own business when Hope decided, "Enough is enough. I'm hungry and bored, so I'm sticking this hand in my mouth."

She'd been leaning in that direction for days, eyeballing her fingers with the same look her father gets near Swedish meatballs. Today, Hope committed to the finger sandwich. It's very nifty because it means she's right on track of a big developmental milestone.

Tonight, we celebrate. Tomorrow, the army masses again for a trip to the GI doctor for a consultation in hopes of making headway of Hope's spitting-up habit, which is improving but persists.

See you in spring

As if the weather isn't reason enough never to leave the house, our pediatrician gave us another yesterday: We need to do everything possible to ensure Hope doesn't catch a cold.

If she does, it could be bad.


Hope's floppy windpipe, tracheomalacia, causes her to breathe heavily. Its severity comes and goes. Sometimes, she sounds like a gentle pigeon cooing. Other times, it's like a heavy smoker or asthmatic. When she's in a good sleep, it's practically non-existent. The video above is on the loud end of typical.

Tracheomalacia complicates feeding, but mostly, it just sounds bad. It doesn't hurt her and it's supposed to improve in about six months and disappear in 1-2 years when the cartilage hardens. But if Hope gets a cold, her airway may not be able to withstand heavier breathing that comes with an infection and hospitalization could be likely.

So avoiding colds is ideal. But how? Practically everyone we know has some sort of sniffle, snort or sneeze nowadays. Many tots get 8-10 colds a year.

We have a double-barrelled strategy whose crux is becoming hermits. Luckily, I've been training for this moment for years. It could be harder for Maureen. She has friends.

On doctor's orders, we're avoiding all holiday get-togethers, the mall, restaurants, present exchanges and fondu parties. Hope only leaves the house for doctors' appointments until April. We'll minimize visitors, wash our hands to their bones and wile away the hours by loving our daughter to pieces, playing games, watching bad television and eating lousy Midwestern comfort food like this monstrosity I whipped up with a few cans of soup and fake biscuits.




Hope didn't eat a bite (smart kid) but still put on 5 ounces in two weeks. She's now up to 4 lbs., 4 oz. and grew a half-inch to 17 inches.

The other half of the strategy is a Synagis shot. It's a super-duper drug to avoid respiratory infections that is recommended for premature babies or those with breathing difficults. It's hardcore: About $1,000 per monthly shot through the three months of winter. Insurance is often reluctant to pay, but Hope should qualify. If not, we'll eat the cost, begrudgingly but fully aware there's no alternative.

The Natural

(Click here if slideshow doesn't load)

It was 2:30 in the morning. I was trying to be a hero. I confirmed I'm not.

"C'mon, Hope!" I snapped, the dribbles of milk squirting out the sides of her mouth; the inconsolable tears complementing her wails. She was one hour into a two-hour fit. "Gimme a break! You can't be this upset! Stop exaggerating!"

I love my daughter like crazy. At that point, I'm ashamed to admit I didn't like her very much. I tried everything. Cooing. Oohing. Ahhing. Patting and cajoling. Nothing worked. Deep in the night, fighting sleep, I felt like a failure.

I volunteered for an extra feeding shift to help Mo get a solid six hours. Instead, the dog started barking, the cats were whining and Hope wouldn't stop crying. Mo awoke to me ordering the dog to "GET!" No one was happy. It was frightening because it confirmed a few things that are tough to admit. My little girl's beauty won't magically cure my grouchiness. And my parenting skills need some work.

Somehow, I'd deluded myself into thinking that being a funny uncle and cool guy to drink beer with would make me a great Dad. When I fantasized about fatherhood, I was always giving poignant advice, making hilarious fart noises and letting the kid win at Candyland. The daydreams didn't involve techniques to help her pass gas or neck angles to ease her wheezy breathing.

Feedings are huge to us. Hope isn't going gangbusters with weight gain. She's still about 4 pounds, 2 ounces. So we need to wake her every three hours to try to force a bit more food down her grape-sized stomach.

Feeding is a major pain with CdLS kids. Some can never coordinate drinking from a bottle and need to have tubes surgically implanted to their stomachs.

So the fact that Hope can figure out this breathe-suck-swallow trifecta is encouraging, but some days are better than others. Sometimes, she sucks it down like a champ, falls asleep on my shoulder and listens to my rambling life lessons ("The Detroit Tigers have significant holes in 2008." "Kitties are furry and fun to pet.") Other times, it's a struggle. She cries like crazy when I pick her up, kicks it up a notch when I change her diaper, then goes into full-on "Don't Mess with Me, Buster" mode when I feed her. She'll straighten her legs, try to wiggle away, cry some more and shoot me bad-juju, hoodoo voodoo evil eyes. A good portion of the milk from the bottle dribbles out her mouth. She'll forget to breathe and turn blue or spit up through her nose. She'll fall asleep mid-feed or get a gas bubble stuck in her stomach that drives her batty.

There are times, blurred by sleep deprivation, that I conclude, "I have no idea what I'm doing. My daughter is only a month old and already hates me."

Mo is much better. It can still be a challenge, but she is adept at picking up on Hope's cues, reading her body language and anticipating her needs. So far, I've tried to compensate for my lack of innate skills by volunteering for lots of errands. But I realize that Hope doesn't care how many times I go to Kroger, fix the garage door or update the blog.

It's a blow to the ego, but I have to conclude I'm just not a natural at this stuff. So I woke up Sunday morning and did something else that doesn't come naturally.

"Hey, I feel terrible about last night," I told Mo. "You're good at feeding her. Maybe you could help me improve."

One month

I suspected Mo was going a bit stir-crazy with all this baby stuff. I discovered how much today when she woke up in a foul mood from a disturbing dream.

"All this food was getting shoved down my throat," she complained. "My sister, Anne, kept rubbing my back. I kept thinking, 'Stop it! This is very uncomfortable. I don't like this at all!' But I couldn't talk. I had food in my mouth.

"Do you think that's how Hope must feel?"

I'm no dream analyst, but that may mean something.

Hope is four weeks old today. It's been 12 days since she came home. Mo seems to be digging the new mom thing. She's very protective, eager to ease Hope's worries and delights watching her little cheeks become chubbier daily. She's positively thriled, but exhausted.

We have two major observations after one month, neither of which is surprising: It's amazing how much we love this little girl, but weren't quite prepared for the level of work. Feeding is major production. Every three hours, we try to cajole her into eating just a bit more. That lasts 30 minutes and is followed by another 30-60 minutes of holding so she doesn't spit anything up. Often, that means coaxing her to sleep, then realizing we need to wake her up in a half hour to repeat the process.

Mo does most of the heavy lifting, and it's all-consuming. A scarier sign that Mo may need some diversions -- crossword puzzles? stuffing ships into bottles? -- came yesterday.

Mo looked at me and uttered truly frightening words: "I may actually be missing work a little."

Baby Fog

Forgive us for our recent lack of insight or updates. We've hit that point in the parallel universe of new parenthood when we have oodles to discuss -- and worry about -- among ourselves, but precious little to report to the outside world.

I thought about posting updates this weekend, but realized my big news amounted to stuff like, "Maureen finally changed out of her pajamas today" or "I've almost come up with a second verse to my hit feeding song, 'You Gotta Work it to Burp It.'"

Pathetic isn't it? You'd think those lyrics would just flow.

I returned to work for good today, Everyone was curious. I was surprised how little I had to say. Hope is doing what she should. She eats, cries, farts, poops, burps, sleeps and doesn't seem to mind terribly when our dog, Lulu, walks past and licks her head. That's a three-hour cycle that repeats, 24-7. Occasionally, Hope will stare at her mobile in big-eyed wonder or Lulu will mix it up by licking her feet. But for the most part, the cry-eat-sleep cycle prevails.

There shouldn't be much more to say, but, I found myself calling Mo every two hours today demanding answers: Did she poop? Describe its consistency, mass and color in vivid detail. Any spit-ups through her nose? Fresh or digested? Would you trust generic gas drops?

So that's it how it is now. Any semi-intelligent conversations we once had have faded into what Mo calls the Baby Fog and I call Fussing with the Fussbudget. Mo has left the house three times in 11 days, including once today to place a can in the recycling bin. I have been typing with one finger for 20 minutes because there is a baby on my chest and I'm counting breaths per minute (44.)

I got home about 7:30. We tried the normal, "Hey, any interesting stories today?" blather, but neither of us could fake it. Within two minutes, we were running to the Internet in search of answers for a mysterious pink spot on Hope's forehead and deciding whether three consecutive dry diapers constitute constipation.

Now, the rest of our lives

So this is it. Home. Alone. Perpetually tired. A dog at your feet, a baby monitor never more than 3 feet away. No burp, wheeze, hiccup, fart or gasp left unexamined. All of them sparking new worries, what-ifs and moments of "I know we shouldn't, but let's just check the Internet this one time for symptoms of whooping cough."

I dropped off my sister and brother, Beth and Steve, at the airport today about 5 a.m. For the first extended time since Hope's birth, we have no house guests. There's no one to run errands, give us another excuse to order take-out or offer advice, reassurances and fresh insights into "Dancing with the Stars."

This is our life now: Me, Mo, two annoying cats, an occasionally behaved dog and a baby who may not need our full attention all 1,440 minutes a day but sure as heck gets it.

It's what we always wanted. And it's great, but scary. Even if Hope didn't have a genetic condition, we'd be fretting now. But she does.

We're coming to believe that caring for a special-needs child is a lot like raising a healthy one. But everything is magnified and you have a lot more doctors' appointments. We have the same fears -- is she getting enough to eat? is that sneeze the start of the Taiwan Flu? -- but less margin for error. Hope is doing great, but she may always have health worries. Kids with CdLS, her presumed condition, have a host of potential problems from feeding and hearing to motor skills and development.

Hope already has seen more doctors than I have in my life and her December is shaping up like a doozy: Cardiologists to follow up on the blood-flow issues in her heart (so far, so good, but intervention probable in her life); audiologists to follow up on her hearing (preliminary tests show she could have a mild hearing deficiency that she may be able to outgrow); physical therapy to tone those arms as well as regular appointments with our pediatrician and geneticist.

It's overwhelming stuff. We have our moments, but we try not to let it consume us. We feel terrible that Hope may have to endure more than other kids, but we are well-practiced in the art of self-help mantra: She is who she is supposed to be. Don't borrow worries. One day at a time. Don't worry about five years any more than parents with healthy children worry about them growing up to be jerks.

They may be cliches. But they're also quite true, and Hope makes all of this so much easier. We fall deeper for the sassy redhead who becomes more expressive (and attitudinal) every day.

And she's doing well. Hope isn't exactly a candidate for Jenny Craig yet, but is finally back to her birth weight. Her funny breathing -- tracheomalacia, the saggy windpipe that eventually goes away -- seems a bit worse in the past two or three days. The doctors say it's nothing to worry about, but we do anyway. She's also feeding well, although I gave the false impression last week that Hope is a breast-feeding champ. She has fed from her mother's breast. Once tremendously. Since then? Eh, not so much. But you should see that kid with a bottle of mother's milk! Chug-a-lug!

We weren't sure about the future of the blog after she got home. The crisis has passed. But the need remains for a place to post updates, keep those who are interested in the loop and minimize redundant conversations.

Plus, it gives us a chance to brag up our girl and share fantastic photos like the ones Steve shot this week.

Ain't she a cutie-patootie?