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.

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.

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.

We wait

Hope has a big heart. It sounds like swell news and something she comes about honestly -- Mo is nothing if not magnanimous -- but it's probably not.

We returned today to the cardiologist for a follow-up appointment. Of the issues that send Hope once a week to various specialists, her heart defects are the ones that terrify us. We fill notebooks cataloguing her daily feeds and weight, debate the quality of her poop and sleep for hours and absolutely delight discussing her latest smiles, farts and grimaces. But we barely talk about her heart issues because they're that scary.

Or maybe they aren't.

As we learned six weeks ago, Hope has an abnormally thick left ventricle. That's the main pumping chamber of the four that comprise her heart. It's on the mild side of big -- we're talking perhaps 5 millimeters compared to 3 -- but it's definitely measuring larger since her birth. Presumably, that's from overuse. Like a muscle, the heart grows bigger when it's asked to do more. It shouldn't have to do all that much for a little girl who turned 3 months old today.

Oddly enough, Hope's heart appears to be working well. Her blood pressures indicate it's doing a bang-up job distributing blood through her body. The flow through her heart seems fine as well. And the cardiologist today ruled out aortic coarctation, a pinching of a valve like a garden hose that causes blood to flow with increased velocity -- and worried us the most just two months ago.

So, like a lot in life and medicine, we're left with an unknown that's only resolved with time.

If her heart is growing thicker, it appears to be doing it on its own. There's no blockage making it work harder. The tissue itself could be abnormal, a very serious condition known as cardiomyopathy. We don't know now. This could go away, be a lifetime condition managed -- but not fixed -- by medicine, or it could eventually prove fatal.

So we wait.

The unknown is frightening. We're not good at it. But there are worse outcomes. The thickening isn't severe enough to rush us back to the cardiologist soon. We have a follow-up appointment in three months. We left feeling OK. The morning was stressful -- Hope melted down during an echocardiogram, EKG and blood-pressure screenings -- but our big, unspoken fears weren't realized. The tests didn't find more problems to require immediate surgery.

Driving home, we talked about the last few months and years. I launched into an empassioned diatribe of gobbledygook about how this is the defining moment of our lives. It sounded awesome for about 40 seconds. Then, as is my wont, it quickly made no sense.

Mo cut me off: "If anything, this just teaches me once again that we need to savor every day like the gift it is." She's right, of course. I'd be tempted to say she has a big heart if I didn't just learn that isn't always a good thing.

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.

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."

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.