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.

Bad dog

Did you hear the one about the dog who thought she needed hearing aids?

No joke. Continuing this month's theme of animal-induced melodrama, the scene was thus: Mo is downstairs; Hope is dozing contentedly, dreaming of ceiling fans; I am reading with the dog at my feet. It's an achingly stereotypical portrait of suburban idyll.

And then: Crunch, goes the dog. Huh? goes the oblivious owner. Crunch goes the dog again.

By the time I look down, the damage is done. Lulu is nibbling on one of the Oticon Vigo BTEs, the sleek, pretty-in-pink hearing aid that we spent the summer battling bureaucrats to acquire. We had them precisely one month.

We were mortified. The aids go in a hard plastic carrying case. They were left somewhere Lulu could find them, which as a friend says, is planet Earth. We were especially embarrassed because we felt like irresponsible ninnies who need to learn everything the hard way.

It went down something like this.





Fortunately, insurance is picking up the cost, and no animals were hurt in the reenactment.

We adopted Lulu as a puppy two years ago this week after listening to "Marley and Me," a tale of another bad dog who's hard not to love. Since that time, Lulu has destroyed our yard, eaten roughly 130 pairs of socks and underwear and ruined our carpet.

But she's tough to stay mad at for very long. Everyone has their thing. Lulu's is eating stuff.

On another level, we think Lulu has prepared us for raising a special-needs daughter, imbuing us with forgiveness, understanding and patience that we were sorely lacking a few years ago. Or maybe that's just a hifalutin way to say we're too lazy for more dog training.

Homecoming

Like all robust failures, the Great Bachelor Experiment of '08 is about to come to its atrophied, pathetic end. The girls return to Michigan on Tuesday, thus concluding 10 days of dynamic loser-dom the likes of which are impossible to achieve without a home weather station, membership to the Mickey Rooney Fan Club and a soldering iron.

The highlights: Riding the bicycle with Lulu; watching Beverly Hillbillies re-runs; poorly executing home-improvement projects; botching Hamburger Helper twice and discovering "Hurl," a game show that combines competitive eating, amusement park rides and puking.

I'm excited to have them back. Thanks to my folks for taking such good care of Mo and Hope and showing them Maine, but 10 days is too long to be away from the ones you love so much.

Here's a video from one of my Heart of Dorkness moments.

Fathers Day

Sleep in. Kiss the girls. Slurp coffee. Play with Hope. Take Lulu for a bike ride. Don't die. Read enough of the New York Times to feel smug for the day. Eat blueberry pancakes. Play with Hopesy. Get presents. Like 'em. Read card. Stand in awe that Hope has become a poetry prodigy.

Read Hope one of my presents, my favorite book as a child, "How Tom Beat Captain Najork and His Hired Sportsmen." Go back to bed.

Feed Hope strange brown mush with spoon. Consider it a triumph that 20 percent goes in her mouth. Relax. Lay on couch. Put on funny hat. Take it off. Kiss the girls. Eat leftover steak, cheese and pickles.

Go to zoo. Push Hope. Miss the chimpanzees. Think that anteaters sure look funny. Sit on grass. Play with Hope. That's the best part. Go home. Eat coffee ice cream. Play Frisbee with dog.
Call my Dad. Get more presents. Eat more pancakes for dinner.

Count blessings on near-perfect Fathers Day.

Cutie and the killer

The morning sun shone. Hope cooed a happy coo. Death loomed.

Half-asleep, I cradled Hope. She batted a toy. I sipped coffee and absent-mindedly opened the back door for Lulu. In about 1 1/2 seconds, my mind raced from domestic sloth to primal fear:

Boy, Lulu seems awfully peppy. Look at that tail wag and wag. She's a good doggie. Ha, ha. She runs funny. Hey, she's darting after a squirrel. It's nice she has interests. Go get 'em Lulu! Wow, that squirrel is slow. This is gonna be close. Uh oh. Too close. What's the matter with that squirrel? Must warn squirrel. How do you warn a squirrel? Form words with lips. Yell something.

RUUUUUUUUUUUUN SQUIRREL, RUN!

It was supposed to sound alarming. Instead, I sounded like Jenny from "Forrest Gump."

Too late. Dead squirrel in the backyard. Baby in my arms. Dog acquiring crazed look, batting squirrel carcass and biting the tail in a manner I hoped was more Lennie from "Of Mice and Men" than stone-cold Cujo.

It was Lulu's second known kill. The first came last summer. Rabbits had descended on our neighborhood that spring, soon after we learned Mo was pregnant. They were everywhere.

"This is a good omen," I mused. "Rabbits are a sign of fertility. Everything's going to be OK."

The morning before of one of our nail-biting ultrasounds and echocardiograms, Lulu got one. It was twitching. She was lurking above it, giddy and proud. Mo screamed. I spun.

"There's no such things as signs. But, um, if there were, this would be a good one. Everyone knows rabbits are bad luck."

For the next few days, it's tough to view her the same. Rationally, you know it's instinct at work and dogs have struck an evolutionary bargain to be our best pals. But holding a 7 1/2-lb. girl, watching a 100-lb. beast lick her muzzle while lurching over squirrel guts, fears mount:

When Lulu licks Hope's head is she softening her up? Maybe when the dog jumps onto the fence and barks at the kidney-failure dog next door who wears a sweater, she's not saying "Say, neighbor what's going on?" Perhaps we should rethink our fun game of pointing at our cats and yelling "Sic 'em, Lulu!"

We're waiting for Lulu to become fiercely protective of Hope. So far, it's mild curiosity and low-grade jealousy. We try to further the bond. Hope pets Lulu, who doesn't seem to mind. We lavish attention, encourage them to interact, but worry that Lulu will step on Hope. We say things like "Lulu, this is Hope. Protect her." If she understood English, it would be that easy.

Mo insisted I wash out Lulu's mouth and paws before she returned inside. The killer didn't appreciate the indignity, but was curled up near Hope's bassinette 15 minutes later.

Mystery solved?

We like to think we're clever people. I almost solved a Suduko once. Mo kicks some serious patootey at Scrabble. We're both self-aware enough to know that few things can make you feel so dumb, so fast as child-rearing.

We've been in fits over Hope's mystery ailment. She has a bad cough. She's running a low-grade fever. Her diaper rash looks like the surface of Mars. She drools like Marmaduke eying the mailman.

Last week, we took Hope to the pediatrician. The diagnosis: Who knows? Maybe she has an ear infection. The treatment: 10 days of bubble-gum flavored antibiotics.

The drool, two-pack-a-day cough, diaper rash and boogies persisted.

Next came Internet research. Is it allergies? Do we need to find a good home for Lulu or -- horrors -- actually start cleaning the house?

We were onto the rock 'n' roll pneumonia and the croup before Mo put it all together.

Bad rashes. Coughing. Drooling. Irritability. Mo stuck her hand in Hope's mouth.

Son of a gun, we think our girl is teething.

One of the dangers, I think, of having a child with a fairly exotic genetic condition is that sometimes we skip over the simple causes for her discomfort.

But it's sometimes complicated stuff: We got the tests back from Hope's endoscopy a few weeks back to measure her reflux and determine why she spat up blood. Once again, the inscrutable Dr. Spitenup threw us for a loop. The results showed mild inflammation of the area near where the stomach and esophagus meet.

Translation: A bit abnormal but not the horror show we expected. So, once again, we've dodged our worst fears. And for that, we're happy.

A love reborn?

It's spring, love and possibility abound and Hope's boyfriend -- or a reasonable facsimile thereof -- has come wooing.

As some recall, Hope endured the whirlwind with teddy bear beefcake Daisuke Matsuzaka. Attraction begat infatuation, intoxication and finally shame at being so young and falling so hard, so fast. Like many classic romances, it ended in tragedy.

Lulu ate the doll. Scorning a love she could never understand, she lashed out like Iago or some other Shakespearean scallywag. Or perhaps she was hungry.

Either way, we were crestfallen. Hope's first love was gone. Failures as parents, we scoured the Internet for a replacement. My sister, Beth, answered the call. Another doll was in the mail in two days.

But young love is elastic, especially when it involves broken hearts. And can ooga cha-cha, hubba hubba burning love simply be cloned?

So Dice-K is back. But Hope persevered. Holding plastic rings makes her squeal. Her hands fascinate. There's more to life than hunky dolls. She has moved on.

But oh what a specimen. She tries to resist. But it's Dice-K. She looks askance. She sneaks a peak. He's still got it. Oh my.

Can she trust her heart again? We wait. We wonder, while Lulu lurks.

Baby noir

One of the causes of the blog break was my first stab at baby film noir. Like a lot around here, I'm not sure if it's sheer genius or just dumb.

The back story: We've had partial season tickets to the Detroit Tigers for four years. Opening Day is sacrosanct. Initially, that was because of the majesty of the game, the hope for renewal and the return of spring. Now, it's just a good excuse to drink beer.

This year, it caused a self-induced miniature morality play. Check it out.

A big, short stroll

The sun shone for the first time in eons. The same streets that were so humdrum for months suddenly seemed charming. The mercury kissed 61. What better day to debut the Chicco Cortina Travel System?

That's right. It's not a stroller. It's a "travel system" with four cup holders for the parental units and infants, all-wheel suspension and something called a 5-point harness. The cruise control and heated seats were optional.

We waited for this day since Hope's birth. Pushing your kid down the street in a "travel system" is one of those mundane activities that seem so profound when you have to wait -- and work -- for months to get there.

First, Hopesy was too small. Then, winter descended and our doctor-ordered hibernation during cold and flu season began.

This was huge. One small stroll for Pippi. One giant leap for normalcy.

I kicked the tires and checked the manual for 20 minutes. Mo fussed with blankets before finding exactly the right one for the 15-minute journey. We made it to the end of the driveway before acknowledging the obvious.

"Why are we so nervous?" I asked.

"We just need to live our lives," Mo said.

That's been her mantra for weeks. It's one thing to vow to give your daughter a normal life when it's an abstraction because you can't go anywhere. It's another to actually do so when you can.

Our worries were unspoken: What if we were 10 minutes from home and Hope melted down? What if we hit a bump? What if Lulu went bananas? What if some hillbilly busybody sees our 5-month-old, 6 1/2 pound girl, gets the wrong idea and phones Child Protective Services?


We walked one block, gingerly traversing each sidewalk crack. We walked another block. Then another.

Hope was so concerned she fell asleep.

Like a lot with Pip -- or life, I suppose -- the first time is always the most nerve-wracking, and big fears that can paralyze rarely materialize.

We took the long way home.

More cords!

I'm swearing off grand conclusions about the state of Pippi. For I fear this blog may be a jinx: Announce she's wonderful and she'll melt down for a week; voice fears of that meltdown and she'll delight for days.

We get it, Pip! You are a mysterious, wily little girl. Stop rubbing it in.

Life has returned to some semblance of normal after the hospital. Hope now sleeps with supplemental oxygen from about 9:30 to 6 or so. We think it's helping, but I've learned my lesson about conclusions.

The oxygen is a simple setup. Then again, so are moonshine stills. Both bear a passing resemblance.

Hope is on a small strip, or cannula, that shoots a 1/2 liter of oxygen into her nose a minute. That's connected by hosing to a gray box about the size of a dorm-room refrigerator. It takes room air, humidifies it with a small amount of water and converts it to pure oxygen. It's a glorified air compressor, not unlike the quarter-suckers at gas stations that fill tires.

Hope's bassinet is about 4 feet from the monstrosity, but she's hooked to it by a 25-foot tube. That's enough to make it from our room, where she still sleeps, to her nursery, where she eats. It's also enough to make it halfway to the back door when Lulu is barking before being snapped back by the end of the line. That's great because I was running out of excuses to shout profanities at 5 a.m.

The point of all this oxygen, of course, is to help Hope over the hump during apnea episodes. It may not eliminate those moments when she stops breathing. But it should give her enough reserves to avoid a meltdown for those 3-8 seconds before she catches herself and resumes breathing.

Of course, that involves more cords.

Her foot is wrapped in a device and connected to a portable pulse oximeter, an electronic device that measures the saturation of oxygen in her blood and heart rate. The oxygen rates tell us when she's having trouble. Normal oxygenation is 95-100 percent. An alarm sounds when rates fall below 88 percent. Or when she shakes her foot. Or when we touch her. Other than that, it's awesome.

Seriously, things have worked fairly well. The cats show an unhealthy interest in our new collection of cords. Lulu thinks the oxygen machine is a rival and won't turn her back to it. Initially, it was scary having a large, humming, explosive device that can be used as a bomb in our bedroom. But hey: I'm the bomb too, and Mo is almost used to me.

A rival for Hope's smiles

Lately, we've deluded ourselves into thinking we're getting the hang of this parenting thing. Our daughter digs us. She looks straight into our eyes, laughs at our jokes and smiles like she just won a pie-eating contest whenever we're nearby. We are so cool.

We learned how we really rank today when we met a rival for her affections, something so fascinating and endlessly amusing that we can't hope to compete.

Hope has discovered the ceiling fan. We may never win her back.

We will hold her, tickle her belly, coo and goo. She'll like it OK. Then, it happens: Off, over our shoulder, she will spot it a few feet away. Her eyes widen. Her mouth slackens. She succumbs to its allure.

Game over.

Hope is transfixed. And who can blame her? Sometimes, it goes fast. Sometimes, slow. Always, round and round. That's tall company.

Hope rewards the fan with full-body, giggling delight smiles the likes of which are far more euphoric than the "Hee, hee! OK, I see you already" grins she bestows on us.

Like a lot we've learned so far in parenting, it's a bit humbling. Hope's happiness is a primary concern. Besides health, it's what we want most, so we'll take it however it comes. But a fan? A clock maybe. A blinking alarm clock for sure. But a stinking fan?

Full disclosure moment: We don't even rank #2 behind the fan. That distinction goes to lights. They are bright and full of, well, light. Hope will smile in our arms, full of mirth and glee. We will congratulate ourselves on developing such a rapport with our sweet princess, then realize she's looked past us for 10 minutes and is enjoying a special moment with a lightbulb.

Again, it's tough to argue. Lights help you see. But for those keeping score at home, Hope's true loves are in order: Fans; lights; that special lady who birthed her from her loins, feeds her eight times a day, comforts her amid the sorrows, lavishes her with hugs and cleans our her eye boogers; and that dork with the video camera.

We had a moment of pause when we worried unnatural fascination with fans was a sign of a developmental delay. Then, we discovered page upon page online of perplexed parents of newborns who also can't compete with rotating blades.

So we'll take it. If Hope is happy, we're happy. And hey, Lulu still thinks we're pretty cool. Then again, she eats her own vomit.

New Year silliness

We planned on posting a montage today of Hope's latest and greatest smiles. She's become quite the wide-faced jiver of late. Unfortunately, we're having technical difficulties and you'll have to take our word on it.

Instead, here's a goofy video I threw together last week documenting our hell-on-wheels New Years, complete with crazy hats and everything.

It's been a quiet week, which is nice. Hope has a few shots tomorrow and some gastrointestinal tests Friday.

Life and content

One of the dangers about blogging about yourself -- as opposed to say, crazy TV commercials from the 1970s -- is that, sooner or later, you start to view events not as life but content.

Hope had constipation for four days and didn't soil her diaper? I bet there's a parable there about keeping your emotions bottled up. Maureen got desperate and actually made Tuna Helper? Instant punchline!

So it was on Christmas Day, when I caught myself, Flip Video Camera in hand, waiting for something funny to happen and said, "Enough. You are a freaking loser."

I can get a bit obsessive. Since I met Mo in 2000, I have had the following compulsions: Tennis, chicken, watermelon, ping pong, jogging, baking muffins, singing songs about our cats, setting the world record at Arch Rivals, the plight of the American Indian, the supermarket crane game, homemade video and my pal Lulu, among many others. Usually, I'm single-minded in my pursuit for about three weeks, then move on to another obsession.

So I put the camera down and actually enjoyed the holiday for what it was -- a nice day with big Mo and Hope -- and not as something about which to pontificate.

This blog has been a great outlet during a difficult period. It's cathartic and helps sort through a jumble of emotions. But sometimes I err too much on the most flattering side of our lives -- the part where we're one big happy family, standing strong in adversity, sharing a knowing chuckle and maybe learning a few things.

That side exists, but so does a not-so-nice part that is still trying to figure all this out, still hurt and just now beginning to grieve the loss of typical child-rearing. Blame high expectations for the holiday or general fatigure, but it's been a rough patch. We're still raw from the news about her heart condition. I have moments of anger and self-pity. Mo has moments when she thinks I'm a total ass. We both get jealous of friends with healthy babies, then feel guilty because we do.

We feel isolated. The pool of people who can relate to losing a child to a rare genetic condition that supposedly doesn't recur, then having another child with the same problem is limited to say the least. So we talk to each other. Sometimes that works. Sometimes, not so much.

We walk delicate lines, loving a child with special needs. There's joy she's home, but sadness over Hope's condition. We're proud but scared, alternate optimism and despair, fall deeper in love daily but wonder what sort of life she'll have. We don't want to discard our expectations, but don't want to be naive. We want to cherish each moment, but sometimes fear the future. We want to be honest about her issues, but protect her as well.

When Will died, I had another obsession: I would honor his life by becoming a better person. I volunteered, became a Big Brother, started going to church and smiled at strangers.

That lasted a while, then I switched to a more manageable system of handling grief: I'd feel however I wanted.

That sounds pretty good right now.

It's Friday

It's been a long week. When in doubt, post a cute picture of Hope.














And a dog video that has nothing to do with anything, isn't remotely current, but makes me smile and think of summer. The humper is Lulu. The pregnant lady is Mo.



And to think, Maureen says I don't impart useful information on this blog.

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.