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.

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.

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.