Friday, March 28, 2008

Spring

We did it. We survived winter, somehow managing to avoid catching a cold when everyone in the world had one.

It was quite a feat. Normally, Mo and I swap germs like Typhoid Mary. This year, we were vigilant to avoid passing on anything to Hope, especially since doctors warned she could be hospitalized if she caught a cold. We kept her mostly inside for months and learned a valuable life lesson. Apparently, Mom was on to something with all that talk of hand washing, vitamins, clean living and vegetables. Who knew?

So spring has sprung. Our triumph over the calendar is complete. And, of course, Hope has her first cold.

It began with a few stray coughs. It's evolved into a seven-straight-sneeze symphony that's foul and phlegmatic. She's not sleeping well. The fussbudget is on Fuss Factor Five.

Hope's been out a lot more, so it makes sense that she'd catch a stray something. A few weeks ago, the sniffles and snorts would have sounded serious alarms. We still worry, but realize there's not much to do but ride it out.

There could be some lesson in here about planning your life, excessive caution or letting your guard down. But Mo delights in poking fun of these entries for always ending in lessons.

So perhaps, just this once, a cold is just a cold.

Sunday, March 23, 2008

Hopesy-ly devoted

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Ah, they grow up so quick. One day, they're swaddling and utterly dependent on you. The next, they discover boys and you are chopped liver.

That's how it feels these days with Hopesy, since Daisuke Matsuzaka strolled into her life. My parents gave her a stuffed bear of the onetime Japanese sensation who now plays for the Red Sox.

We thought Hope fell hard for the ceiling fans. That was a harmless crush. This is true-blue, I'm so Giddy I'll Throw Myself in Front of a Train if I Can't Have You amour.

At the mere sight of the bear, Hope giggles. She gets bashful. She flirts. She gazes deep in his eyes. But only for a moment or two before becoming embarrassed and looking away.

She really shouldn't stare. But how can she not? Just one quick look. Oh no! He saw, he saw! Look away. Act cool. Oh, it's too much! One more peek! Just a little one! He's so dreamy.

Easter baskets





Friday, March 21, 2008

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.



Sunday, March 16, 2008

Stupid intuition

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Every once in a while, intuition kicks in and whispers in your ear: “Life is about to turn to Hell, buddy. Pay close attention.”

So I did. There's Mo, holding Hope's finger as she's wrapped in an iron blanket and led between two massive industrial cameras. "Ain't Too Proud to Beg" is on the radio and that nice technician who seemed so chatty five minutes ago becomes very quiet as the test concludes.

Intuition is practically screaming now: "The technician knows how bad it is. That's why she's not saying anything. Hope is in rough shape. She needs surgery."

Stupid intuition. You blew it again. Hope is fine. As is her wont, she once again exceeded our worst fears and continues to confound her perplexed parents.

Hope's utter unpredictability -- great one week, terrible the next, acing tests we think she'll fail and vice versa -- may be maddening. But it's also quite endearing. Like many great artists, Hope is inscrutable. The minute she thinks you have her pegged -- boom -- she'll zing you for having the audacity of presuming she's that easy to figure out.

The latest moment came amid tests during 50-hour hospital stay that was alternately stressful and peaceful, exhausting and restful, interesting and dull and worthwhile and worthless.

We arrived home late Saturday afternoon with the exact same plan we had before setting foot in the hospital: Hope is now on eensy amounts of supplemental oxygen piped into her nose through a cannula while she sleeps. It's supposed to help her apnea, and so far, so good.

But getting there was interesting. The carefully mapped plan for the hospital of weaning her to increasingly smaller flows of oxygen and testing whether it makes her lazy quickly faded. She slept on oxygen Thursday night. The next morning, the attending physician walked in and said, "Well, she didn't have any episodes. I guess it works. What do you want to do? Wanna leave?"

The plan in tatters, we opted for another night of observation. Since we had the time, we also had Hope undergo a gastric emptying test -- a two-day affair scheduled to start Wednesday -- to measure how much food she spits up and whether some spills into her lungs.

That test, in the bowels of Beaumont Hospital, consisted of feeding Hope milk laced with a small amount of harmless radioactive material. Similar to a stress test, she was then wheeled under two cameras that took photos of the material every 60 seconds for an hour. It traced how long it took Hope to digest her food, how much was refluxing back up her esophagus and whether any of it was getting into her lungs or aspirating.

The results were a big deal. If she was aspirating, she would have to undergo a surgery to shut off her esophagus. A feeding tube would be installed at the same time. But if the test went well, it's full-steam ahead to put tubes in her ears and trim some of her larynx.

Despite the nagging, ominous warnings of my intuition, the results were tame: Hope has some reflux that comes back about a third of the way up her esophagus; half the contents of her stomach empties in about an hour; and milk doesn't get into her lungs.

Translation: Normal.

Prepared for the worst, we hadn't even considered the possibility. A day later, it's still confusing. For three months, we've based her care on the knowledge she has severe reflux. Some days, she would spit up 4 times if we didn't hold her perfectly upright. Heck, further evidence this morning forced me to change my shirt -- and that doesn't happen often.

"That little girl is becoming pretty good at making liars out of us," Mo said after the test.

If she is, she's making us happy liars. The Inscrutable Kid rides again.

Thursday, March 13, 2008

Meet Pippi

As expected, the call came early afternoon to return to the hospital. So far, so good, although it was certainly a rough afternoon.

Smart girl, Hope didn't take kindly to nurses sticking tape on her head, wires stuck to her legs or residents barking asinine questions.

As outlined yesterday, Hope is in to monitor how she'll do with small amounts of supplemental oxygen while she sleeps. The thinking is it could relieve her apnea.

The protocol is to start with high levels of oxygen and monitor her effort, or breaths per minute, then slowly wean her off. If all goes well, the small strip that's pumping air into her nose will be weaned completely to room air. Her pediatrician, a gregarious and thorough dude known as Dr. Moleman, thinks the force of air could be enough to loosen her larynx. Tomorrow, Hope likely will be transferred from Pediatric Intensive Care to a regular room in the pediatric ward. There's a chance she could leave late Friday. If not, we proceed with the plan to go home on Saturday.

Only one parent can sleep in the room, so Big Mo curled up in the fold-out couch and I left shortly before 11. Hope was sleeping contently and doing well.

It was a stressful afternoon. Hope cried a lot. But it did pay one big dividend: Hope's new nickname is Pippi for the short, high-pitched pips she's increasingly using to communicate. All credit to Mo. I think it's a keeper.

Back to the hospital early Friday. More details about Pippi and company on Saturday.


Wednesday, March 12, 2008

Back to the hospital

Hope is going into the hospital in the next day or two for 48 hours of observation. It's nerve-wracking, but we're trying not to get too freaked out.

The dreaded results of the sleep study returned. We knew they would be bad. They were worse than we feared: Severe obstructive sleep apnea marked by an alarming number of episodes of suspended or shallow breathing.

We quibble with the severity of the findings. We know our daughter, have witnessed her episodes and have already ranted about the wisdom of putting 47 wires on an infant in a strange room and telling her to sleep tight.

But we don't disagree with the conclusion. She has apnea and we need to do something.

Like everything else with Hope, the solution is complicated. Ultimately, she could still get some of her larnyx trimmed during her surgery for ear tubes. There's some thought that her laryngomalacia or floppy airway may close while she's sleeping and cause the episodes. Or perhaps it could be her reflux and milk is coming back up while she's dreaming about frogs and flapjacks. Or maybe there's another cause altogether.

Either way, we need to figure it out, so we're glad in a way that things are moving quickly. Left untreated, infant apnea can lead to all manner of woe. At the very least, it makes her crankier than her father with five O's and two E's in Scrabble.

We're in the process of evaluating the apnea. Separate tests are scheduled Tuesday to help determine the extent of her reflux. In the meantime, her pediatrician recommended Hope receive supplemental oxygen at home while she sleeps. This would consist of a tank and a small strip between her upper lip and nose that would provide a little boost if necessary.

We were set to proceed with the plan until we met yesterday with the neurologist who monitored Hope's sleep study. His caveat is that not everyone does well with oxygen. Some get lazy, let the supplemental stuff do the work for them and problems worsen.

So we're off to the hospital so doctors can evaluate how Hope reacts to the oxygen. She'll be hooked up to a few more tubes and it undoubtedly will be a major stress for all those involved.

We know this is the right thing for her. Of course we wish we weren't in this position. But our fanciful days of delusions have long since faded. We know this isn't the last time she'll be in the hospital over the next couple years while we stabilize her health. It stinks. But it's true.

The timing is a major bummer. I was ready to fly solo this weekend while Mo went Up North for her annual Women's Weekend retreat, where she laughs and bonds with old friends with hot tubs, large glasses of wine and nonstop talk about how they couldn't possibly live another day without their hunky fellows.

Mo has looked forward to it for months, first worrying she'd miss the festivities, slowly warming to the idea and finally lining up baby-sitting reinforcements in case I wasn't up to the task. It's soul nourishment and she'll miss it. I feel terrible for her. She could use a break.

But life is different now. Not worse. Not browbeating, fists to the sky in grief. More challenging, sure, but also more rewarding because it includes the Hopester.

Monday, March 10, 2008

Cheers

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Three cheers for grandparents! Or, in the parlance of Bob Evans, 2 1/2 cheers for grandparents and we'll punch your card so your 10th cheer is free!

Hope's grandparents are pitching in so much lately they're almost in peak form for the Babysitting Olympics in 2010. Grandma Clem is in a shoo-in for the Snuggle Slalom, while debate rages about whether Grandpa Beef can finally overtake the South Koreans in the Knee Bop Biathlon. Look out for those Romanian judges, Beef!


Seriously, we're lucky to have them in our lives. Besides being generally swell, they've provided regular, welcome spells that allow us to get out of the house, reconnect as a couple and talk about Hope's poop somewhere else.

So thanks. We love you guys. Here's a vid from the other day. Now go do America proud in the 400-meter Dirty Diaper Dash.

Friday, March 7, 2008

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.



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Thursday, March 6, 2008

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.


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Monday, March 3, 2008

Obligatory video

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Here is the obligatory video of the fun long weekend. Good times!

Sunday, March 2, 2008

Long weekend



Hope's uncles and aunt left today after a long weekend. They got a pretty good show. Hope is in rare form these days: Grabbing pens to begin her haiku career; snatching the binkie from her mouth and trying to put it back in; and cooing and giggling as she learns all about Dragon Tales.

As always, it was a great visit and wonderful opportunity to reconnect and laugh. As always, it ended far too soon. These pix were shot by my shutterbug brother, Steve. He's put us all to shame in short order. Nice work, chumly!