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.

A parable of poop

The call came precisely at 4:50 p.m., EST, on Dec. 10.

"We have a breakthrough," Mo reported.

Cue the joyous exultation.

As if we needed a reminder, we learned again this week that all of life revolves around poop (except perhaps those pesky 65 years or so between toddler-dom and seniorhood.)

We had, plainly, a poop emergency. Hopesy hadn't taken care of the TCB since Saturday. Granted, there was one mere nugget on Monday. Beyond that: Lots of moaning and groaning and writhing and ughhing, but four days without satisfaction.

What had we wrought? We broke the cardinal rule of regularity: consistency. We switched Pediasure to Pediasure with fiber, and then fed her an organic chicken baby food she'd never eaten. We strayed from the routine of only switching one foodstuff at a time.

Bingo, bango: Disaster and restless nights. We tried prunes. We force-fed Milk of Magnesia. We begged and cajoled. But during stretches like these, bowel movements have a way of dominating life and conversation.

"Say ... do you think the tragedy in Mumbai is an outgrowth of failed colonialism or an inevitable flare-up of tribalism?"

"I can't believe she hasn't pooped."

"If I do say so myself, that $700 billion bailout sure seems like money well spent. Cheerio, Congress!"

"Smell her diaper. Has she pooped?"

"An army of aliens is swelling at the front door, singing Christmas carols that only Anne Heche can understand."

"Why won't she poop?"

On and on it went. Already saddled with a nasty cough, poor Hopesy would strain so hard tears streamed down her cheek. During a visit to the doctor, she made odd guttural sounds that vaguely replicated the mating call of a libidinous right whale.

Finally, relief came. Hope huffed, puffed and blew ... OK. Enough with the metaphors. We shared our plight with old friend Dr. Spitenup.

"Had you considered suppositories?"

We had one reaction: Duh. Thirteen months on, we're still slow on the uptake on this parenting thing.

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.

On again

Our pal, Dr. Spitenup, continues to confound. Hope's poop tested negative for old blood Friday. We thought that would trigger more monitoring. Instead, Spitenup threw a curve and wants to go ahead with the endoscopy sceduled for this Tuesday.

We're not thrilled. Hope has been in such a giddy mood lately we'd think she was on goofballs if we didn't know better. We're anxious about messing with that mojo, but eager to try to learn more about the source of her intermittent bloody up-chucking.

Like most with CdLS, Hope still struggles with feeding, reflux and digestion. We've stuffed her like foie de gras. She's taken to solid foods -- particularly oatmeal and peas -- like Mikey to Life Cereal. Even so, her slow weight gain has slowed even further. She's put on only about a pound over the summer. Our goal of having her hit 10 pounds by 12 months seems unattainable.

If the endoscopy can provide some answers, we'd be thrilled. Our fear is the opposite: We'll subject her to tremendous discomfort and learn nothing. The alternative, of course, is inertia and that does no one's Breck girl any good.

Speaking of which, we're not being modest about Hope's supposed debut in the CdLS Foundation's monthly newsletter. We've heard rumors for a week that her photo graces the pages, but we're stumped.

We play it cool around the mail lady, but peep out the windows in anticipation whenever she's in the neighborhood. Super-duper telekinetic powers to the contrary, our copy has yet to arrive. But prepare for some serious chest-thumping, "Yeah, that's our girlie" when it does.

Poop collectors

One terrific thing about parenthood is the intensity of the experiences. Joy, wonder, pride, worry and love are redefined in ways so transcendent you question whether you fully experienced them before.

Then there's the little stuff, like poop.

I thought of that this morning when I applied a Popsicle stick ever so delicately to Hope's diaper and smeared it on a small sample strip. Moderation was key. Wielding a metaphor like few can, our gastroenterologist, Dr. Spitenup, warned, "Just a little will do. Don't put it on there like a prostitute putting on makeup."

Oh, Dr. Spitenup, how we've missed you.

Like Chuck Berry, zoologists or those guys in "Jurassic Park," we're collecting poop this week. Even the package is creepy: We wipe the poop on a piece of cardboard with three little pockets for each days' sample. Each package is labeled, "Hemoccult, The World Leader in Occult Blood Testing."

Insert joke here about "Rosemary's Baby." But if you're going to test occult blood, it's nice to have the world leader.

Anyway, the hope is to get to the bottom of Hope's sporadic old-blood belching episodes. They were weekly occurrences in early summer and have since tapered, but haven't completely gone away.

Spitenup's hunch remains that as Hope inches closer to sitting up -- she is getting there but has a ways to go -- she is using more of her stomach muscles and irritating her hiatal hernia. She is scheduled for another endoscopy Tuesday. That's a terrible out-patient procedure she underwent in spring that requires sedation and snakes a scope down her throat with an attached camera. It throws her for a loop for about three days.

If there's no blood in the poop, we can probably avoid the prospect and keep monitoring the situation. Dr. Spitenup doesn't like to be rushed.

We find out Friday. Mo is dropping off the specimens on her way to -- ahem, ahem -- work.

That's right. She made the monumental decision to return two days a week, starting today. It hasn't been easy or without its share of Spitenup-worthy gut wrenching. Mo went on bed rest several weeks before Hope was born, so it's been nearly 11 months since she worked. She worries about getting back into the grind. We're anxious about leaving Hope in the hands of others.

Ultimately, we think it's the right decision for her and for us. The nice thing about working two days is that, no matter the stress, tomorrow is always Friday or the weekend.

We found a nanny nearby to watch Hopesy on Thursday. She has experience watching a child with a similar syndrome, so that is comforting. Fridays, Hope is whooping it up with super-nanny, Granny Clem. I'm not sure who is looking forward to it more.

Fed up, Spitenup

The more I learn about Cornelia de Lange Syndrome, the more I realize the health issues keep on coming.

We're reminded of that again this morning after Hope spat up another batch of old blood. It's becoming a weekly ritual. Last Friday, we were at the movies. My mother and sister babysat. Mo ducked out, placed the obligatory call for reassurance and heard: "Well, she soaked her shirt and bed with what looks like blood and bile ... But she seemed really happy afterward."

She's had about five episodes, each about a week apart, since an endoscopy in late May showed no major damage to her esophagus from reflux. She underwent that procedure -- a scope snaked down her throat -- because we found a few drops of old blood. These are geysers.

The mercurial Dr. Spitenup is on the case. He examined the blood, pontificated and analyzed before arriving at his diagnosis: Hey, it happens.

For months, Hope has moved toward sitting on her own, crunching her abdominal muscles like Jack Lalanne. She's not quite there, but Spitenup thinks the pressure is exacerbating her hialtal hernia, a mostly benign condition in which her stomach pushes into her esophagus. He doesn't think it's a major issue unless it happens more frequently.

Our answer: Uh-unh.

We're pressing Spitenup yet again for better answers. It's taken us months to grow accustomed to his strange ways. We've come to respect him because, so far, he's been spot on -- even if his bedside manner is straight out of 20 Questions or a police interrogation.

But this is different. If he can't make this stop, pronto, we're going elsewhere. Among all of life's nuisances, spitting up old blood doesn't strike us as something to get used to or shrug off.

Radical notions

(I say Hope is auditioning for the bassinet production of "On the Waterfront." Mo thinks she looks more like a survivor of Zion from "The Matrix." Either way, it's a hot look.)

We have new marching orders from Dr. Spitenup: Leave no poop uncounted.

It's no longer enough to merely record that Hope moved her bowels three times in a day. We now need to describe it vividly. The consistency: Like oatmeal or pudding? Creamy or chunky? More, more, more! Pie charts and graphs illustrating trends aren't yet required, but won't be discouraged. Logarithms showing the relation to poo, pee and spittle may soon follow.

We exaggerate of course. A bit. Dr. Spitenup is serious about poop.

And so are we. Like all new parents and many senior citizens, it's become the barometer of our lives. Most conversations about Hope eventually come back to it. It shapes our lives -- in more ways than we ever realized.

The inscrutable Dr. Spitenup, in his odd but ingenious way, confirmed mounting suspicions yesterday about the relationship between Hope's diapers and her feeding. We should have caught on sooner, but we're sometimes pretty slow with this parenting stuff.

It turns out that babies naturally try to move their bowels or expel gas when they take a bottle. It's instinct. So when Hope squeezes and nothing happens, it hurts. The more she sucks, the more she tries to fart, the greater the pain. So she responds like anyone rational would: She stops doing what makes her hurt. Unfortunately, that means avoiding the bottle like a Village People reunion.

So it may be the cause of her terrible feedings could be as simple as constipation. It's a simple theory that we should grasped months ago. Hope is still so small we can feel the gas and gurgling as it moves through her. When there's a rumble in the tum-tum, it usually doesn't portend well.

That's one of the pitfalls of being new parents of a child with a genetic condition: There's no doubt that CdLS complicates everything, but sometimes the cause of issues can be fairly obvious.

Likewise, Spitenup has a radical diagnosis for why Hope sometimes cries for an hour or two around dinner. It's colic. Pure and simple. One or two in 10 babies has it. It goes away eventually, but it's confounded doctors and parents for millenia.

That's not to say Hope's issues are simple. Many aren't. The results of her sleep study were downright depressing. We may need to seriously address her reflux soon. But once in a while, it's nice to have humdrum problems.

Turning the corner?

Before Will and before Hope, we thought we knew a few things about parenting ... or at least about the type of parenting we would never embrace.

We would rant about the durability of children. We would rail against smother mothers who wouldn't let their precious little ones cry for more than 2 minutes. We would scoff at those who documented every bowel movement, tear and feeding in a frilly baby journal.

We have become what we mocked. But at least our baby journal isn't frilly.

We thought about the irony last night as we pored over our inch-thick notebook documenting daily feeds, sleep and crying episodes. We wish we didn't need to be so hypersensitive. But Hope demands nothing short of zeal.

We went over the log in preparation of today's appointment with the notorious Dr. Spitenup, the pediatric gastroenterologist who derives his diagnoses from a series of rapid-fire questions about the quantity of Hope's drool, ratio of her tears and aversion to actual tests.

The results of the log were a bit depressing: Hope had periods of inconsolable crying roughly half of February. It's frustrating because the spells don't seem to come with any rhyme or reason.

One week, she'll be fantastic. The next, terrible. When my sister visited last weekend, we were a bit guarded when she fed Hope. "She's a tough feed," I said. "She can be tricky. Keep the binkie close, her back at a 90 degree angle and be ready for long breaks."

Beth must have thought I was nuts. Hope gobbled the bottle in about 5 minutes and seemed to beg for more, as she had for a solid week.

Hope went south the minute they left. Perhaps she missed her Uncle Rob's songs about Dragon Tales, but as soon as they walked out the door, the crying fits and the messy feeds resumed.

That's what's so befuddling. Every time we think Hope has turned the corner, she hasn't. One week is fabulous, the next feels like a steel cage match every time you put a bottle to her lips.

The good news is it cuts both ways. Every time we think she's headed for something scary, she bounces back, big time and surprises us.

More later. We're nervously preparing our percentages and talking points for Spitenup.

Reality returns

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I put my parents on a plane back to Maine today. It's been almost 20 years since I left for college and I've perfected the routine: No awkward moments, swallowing tears, blubbering sweet sorrows or speechifying; just give 'em a hug; honk the horn at the curb and hit the gas. I save my tears for later.

They were here for five days and it was great. Both have a great rapport and gentle manner with little Hopesy. I took the time off work and it was nice to soak in the goo-goo ga ga time, celebrate Penguin Awareness Day and pass off a few marathon feedings to good ol' Mom. (Free marriage advice: If you and your spouse want to reconnect for a first night alone in three months, "There Will Be Blood" is not a great date movie. I know. It's shocking.)

But sure as dawn, reality returns. So today it was back to work, and Mo was back for Round Two with the inscrutable Dr. Spitenup, the pediatric gastroenterologist who wears grape-flavored gloves, takes no measurements and dispenses diagnoses through a rapid-fire series of questions that requires us to quantify the problem through percentages. Mo told him Hope still has 71 percent happy days, but falls asleep midway through about 40 percent of her feedings and seems about 17 percent less interested in milk the past two weeks. Dr. Spitenup told Mo that he now realizes Hope has red hair and told her to come back in six weeks.

Good ol' Dr. Spitenup. I wish I could find a dentist like him ('My teeth feel 98 percent clean. See you later!')

Tomorrow, Mo finalizes the last of an exhaustive process of meetings and paperwork to enroll Hope in Early On, a state program for developmentally delayed children that should connect her soon with an occupational therapist to work on feeding and other issues.

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.

Meet Dr. Spitenup

After weeks of trying, we finally got in Friday to see a pediatric gastroenterologist to address Hope's spitting up, acid reflux, so-so-feeding and begin the process of evaluating her sucking-swallowing-digesting system.

It's a big deal for CdLS kids. Many are on feeding tubes. Malrotated bowels causing blockage, other problems or death are a concern.

Hope's a bit ahead of the curve. She sucks like a champ, but often falls asleep or runs out of energy halfway through feeding. She can be sloppy. We still need to hold her upright for a half-hour after every feed to avoid throw-ups. At eight feedings a day that also take about a half hour each, you start talking about real time after a while. She's been on Prevacid for nearly three weeks. The acid reflux drug has prompted some improvement, but it's no panacea.

We weren't expecting a cure-all from the doctor, whom we'll call Dr. Spitenup, and the appointment proceeded something like this.

Dr. Spitenup: Describe her spitups. Is there blood? Mucus? Would you say her poops are more creamy or slimy? On a sliding scale of sliminess, what number would you give them? What percentage of the day does she stiffen like a board? When she cries mid-feeding, it is a cry of pain, communication or empathy for a world gone wrong? Is she a happy baby? What percentage of the day would you say she is happy? Have you noticed a difference from the Prevacid? What percentage? Would you say 20 percent? No. How about 44? When she spits up, does it come out of her mouth or nose? Nose, huh? That's unusual. Onto her bowel movements ...

Us: Ah. Um. Err. Uh.

Him: OK, let's go over all this. Normal, normal, normal, normal, normal, not-so-normal but nothing to worry about, normal, normal, normal. Even if she had major problems, we wouldn't do much until she is 2. See you in three weeks.

Us: Um. OK.

Hey, normal is good. We'll take it, but we're not quite sure we trust the good doctor's system of ordering no tests and evaluating Hope based on us picking numbers out of thin air. We're not sure what to expect in three weeks: If we say Hope cries 25 percent of the time during feedings rather than 30 does that mean his treatment is working? How is that anything but arbitrary?

Warned that Spitenup was unorthodox but good, we left the appointment feeling 36 percent relieved, 18 percent amused and 46 percent bewildered.

Bushed

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We bought a garage door the other day. Once adorned with retro eagles that Mo insisted I remove when we moved in, it broke every three months. My parents taught me how to deal with these problems: Ignore them until you can't possibly anymore, then apply the cheapest fix and forget it until it breaks again.

After years of adhering to the tradition of turning small problems into expensive ones, we followed the door's lead and broke down. Returning home from work, I was eager to see it.

I made it about three steps into the garage when Mo yelled at me through the side door.

"What are you doing?" she barked. "Get in here! I need a break."

That's life now. Five minutes looking at a door is wasted time. I'm typing with two fingers and trying to coax Hope back asleep. Mo is napping. She's making up for last night Afflicted with what my father-in-law delicately calls "the creeping cruds," I decided I couldn't help with Hope's feeds and needed a bubble-bath and nine hours' sleep to slay whatever ailed me.

Call it what you like. I consider it a valiant sacrifice to shield my daughter from germs that had nothing to do with eating six slices of pizza in 10 minutes.

Like all new parents, we knew this would be exhausting but weren't prepared for how much. From afar, it shouldn't seem so hard: You burp, feed, fuss, coo; change a few diapers, apply some creams now and again and -- voila! -- wile away the next three hours completing jigsaw puzzles or online enrichment courses.

Of course, it's all-consuming and unrelenting. I'm bushed. Mo's bushed. We're learning that raising a child with unique challenges is probably like raising a healthy one but magnified. It starts with the doctors: In addition to a pediatrician, Hope sees a cardiologist, audiologist, geneticist and physical therapist. And the spit-ups and rashes that would normally be scary are petrifying. Mo is now navigating the maze of health care and HMOs. We'd like to add a gastrointestinal specialist to the list to evaluate Hope and address her spit-ups. It's supposed to be standard for CdLS kids. Our network has pediatric GI docs. The next opening is May.

But big deal. It's work. What great in life isn't? And Hope's doing good, home now for three weeks and notching small landmarks. We don't panic anymore when we don't hear her for 3 minutes. She's becoming more emotive every day, sticking out her tongue, fixing her stares and flashing dimples like she was at the county fair. We're not counting her breaths anymore. But we are counting our blessings.

The Natural

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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."

It's official

Hope has a dorkwad for a father.

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?

Milk maven

News flash: Hope has taken to the nipple.

Mo eagerly reported Wednesday that our miniature milk maniac has figured out that good stuff comes from Mom's breasts. A week ago, Mo had all but given up on the idea. The mechanics seemed off. Hope didn't seem keen on the prospect. Her mouth was too small and appetite too big.

A skeptic, Mo heard all the talk of the miraculous bonding experience between mother and child. She shrugged most of it off, content instead to harness oddly industrial apparatuses to herself and transfer the milk to bottles. But she's become a convert: "I was like 'Wow! I'm giving nutrition to my child. That's pretty neat."

Like a lot of other newborns, Hope's a chugger. She's a bit like her Dad was in college: Drink, drink, drink, forget to breathe, then pass out. But Hope's flow seemed natural with her mother. She paced herself. She took breaths. She had to work a bit harder, but seemed more sated.

So that's good stuff. We're pleased and proud that Hope is able to try new things, struggle a bit and eventually figure them out.

That's a good omen because soon the real work begins. Hope is tentatively set to come home Friday. Mo has visualized and prayed for the moment for months. We were up until midnight vaccuuming, dusting, screwing down changing tables and worrying like mad.

I feel a bit like Robert Redford in "The Candidate." We've won the campaign. The confetti is raining down. We're hooting. We're hollering. We pause and ask, "What do we do now?"

Encouraging clues

I went back to work yesterday. It had to happen sometime. They pay me.

It was very strange and hard leaving Mo to do the daily heavy lifting of watching little Hope in her crib all day, dealing with doctors, changing diapers, taking temperatures, bottle feeding and sneaking off to watch "Gilmore Girls" reruns.

But it's good to get into this routine. Docs aren't saying for sure, and we're naturally cagey, but Hopesy may be coming home fairly soon. Clue No. 1: We were told to bring in her car seat to make sure she can sit in it for long periods. Clue No. 2: Most of the conversations with nurses now involve care techniques, not questions that start, "How worried should we be about ..." Clue No. 3: The doctors say she could come home fairly soon.

See how we put that together? We're going to start a detective agency soon.

Naturally, we're ecstatic and nervous. We're so proud and humbled by this strong, fussy and cuddly little thing we've produced. She seems to face a challenge -- like how do I drink all this milk without choking myself? -- take some time to figure it out and improve. That's encouraging. So is the fact that our daily, little worries on Saturday are never the same on Tuesdays. I guess that's progress.

We're not holding the doctors to a date and are reluctant to jinx ourselves by announcing it (Quick: Everyone knock on wood.) We know things move slow in the NICU. We know dates could change. More than a week ago, one of Hope's pod pals was ready to go home. They had the car seat, the date and camera and were almost out the door. Now, he's back in an isolette. So we're not going to get too ahead of ourselves.

But we'll take it for what it is: A seeming endorsement of stable health.

It doesn't sound like much. But it is to us. And soon, the really hard work begins.

(PS -- We weren't kidding. Knock on wood. Now.)

Good day with an asterisk

Hope is a week old today. Eight days ago, we were at Big Boy for a final meal before this grand journey. Between bites of Mo's favorite -- the Slim Jim -- we assured ourselves, "We can do this."

That's good advice today. It isn't easy. When Hope was an abstraction in the womb, Mo felt some control over caring for her. Now that our little one is her own being, the protection instinct is overwhelming. And when we can't, it's heartbreaking.

Last night was a bad reminder that progress in the NICU doesn't always move in a straight line. After a good day, Hope threw up, choked on her vomit, couldn't resume her breathing and needed doctors to pump air into her lungs with a bag.

It occurred about 20 minutes after a particularly slow feed, and her blunderbuss father blames himself for putting her back to bed too soon after she mowed down her food. She is, after all, a Kurth and Feighan, so one day the managers of taco buffets may cower in her presence.

We hope that's all it was. The doctors didn't seem concerned enough to change treatment (that we know of) and figure it's just something to watch. But it's excruciating. After we left the hospital about 10:30 p.m., we lay in bed, awaking every three hours around the time of her feedings, willing the phone not to ring.

It didn't, but feeding may be issue. Little Hope already has made us proud by quadrupling her daily dosage of mother's milk since Saturday, but she's still getting the hang of this simultaneous breathe-suck-swallow thing. Sometimes, she falls asleep mid-feed. Other times, she forgets to breathe. Give the kid a break. It's only been four days.

Kids with CDLS have trouble with reflux, though, so it's cause for concern. Early Tuesday, nurses put a feeding tube down her nose as a fall-back option in case she's reluctant to take the bottle. That upset me and her -- Hope ripped it the tube when her Grandma Clem held her -- but we need to embrace whatever will help her.

The shame of it all was the episode occurred during a particularly good day. So wise ol' Mo is considering it a good day with an asterisk. And that's the right approach in the NICU, where progress is often measured in weeks not days.

By that yardstick, it's been a wonder week for Hope. She was born. She endured a bunch of tests and passed them all. Her stutter breath is improving. She's becoming a pacifier sucking champ. She's feeding. She's bonding big-time with Mom and seems to tolerate her father, too.