Decision day

Today is D-Day with Dr. Spitenup, when we throw ourselves at his quirky mercy and see if Hope needs surgery to perform a fundoplication and install a feeding tube.

We pushed up an appointment set for late October when Hope added a new trick to her repertoire: Projectile vomiting. It's eased, but there was a week or so when she'd make like "The Exorcist" twice daily.

Eleven months into being parents of a special need child, we've had to re-learn worry. It's a tricky balancing act. We can't rush to the hospital every time she thew up old blood. But we shouldn't get used to it, either.

A fundoplication, which wraps part of the stomach around the esophagus, could help with her reflux. A feeding tube would allow us to continually pump calories when she sleeps to fatten her up.

When Spitenup broached the fundoplication and feeding tube a month ago, we were nervous and scared.
We've since slowly warmed to the idea and, after a summer of Hope spitting up blood and negligible weight gain, we've concluded it may even be overdue.

Ideally, we'd like to coordinate surgeries with our ear-nose-and throat dude, Dr. Frosty. He wants to trim part of her windpipe -- the larynx -- to fix her heavy breathing. He thinks part of her problem with weight gain is because she burns too many calories breathing.

But we shall see. Spitenup has a way of confounding us.

Stupid intuition

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.

Surgery?

Quick update: Hope had her appointment today with the ear-nose-throat dude for her hearing deficiency. Generally good news: He wants to put tubes in her ears to open what appears to be a tiny ear canal. He's talking about six weeks, maybe the end of January, for surgery that would require anesthesia. That's a bit scary, but apparently, it's about a 15-minute procedure, which is the most common nowadays on children. The protocol: follow-up checkup in about six weeks to see how she's developing, then probably surgery. If it all goes well, she should be able to hear, which would be abso-freaking awesome. It's tough reading, singing and talking to Hope as much as we do knowing that she probably can't hear us.

Mo also learned a new word during the appointment: Laryngomalacia. That's what the doc thinks is causing her wheezy breathing, rather than tracheomalacia. It's the same general idea: An under-developed floppiness that obstructs her airway, makes it imperative she avoid colds but generally is something she will outgrow.

But instead of coming in the trachea (the windpipe) it comes from the larynx (the voice box.) The doc says he'll take a peek to confirm while she's under for the tubes procedure.

More good news: Mo reports Hope was an absolute trouper during what must have been an annoying morning. She also got her Synagis shot to boost her immune system. Hope cried a bit while the doctor was jamming scopes down her ears, but otherwise did great.

She's been through too much already, but she's already making us hugely proud. It's days like today that remind us that no matter the difficulties (see self-pitying earlier posts), we're incredibly blessed and fortunate to be on this journey with this wonderful little girl.

Snow day

In southeast Michigan, the media call days like today "chaos." In Maine, where I grew up, they call it another Sunday.

We awoke today to about 6-7 inches of snow. In many parts of Michigan, that's no big deal. Here, we get one of these doozies about once or twice a year and everyone goes kookoo. I turned on the TV news this morning and saw a reporter run after a woman at a gas station, stick a microphone in her face and demand, "Where is your hat?"

It's a fair question, I guess, because it's hard not to get a bit giddy on days like today. After all these years, big snows still feel like an event -- a communal pause from the humdrum and invitation to do something different. The roads are impassable, schools are closed, so why not build snow tunnels that are one good gust away from suffocating you, be on the wrong end of whitewashes in junior high or kill the day drinking skunk brew in college?

So I skipped out of bed today, excited by the possibilities. I looked out the window, contemplated the still of the morning and thought, "Oh yeah, we're not doing anything. We're staying inside again."

It's not even officially winter, and cabin fever is setting in. As detailed earlier, Hope's tracheomalacia makes it imperative she avoid catching colds, so we're hermits until spring. We may need some hobbies -- and fast. We skipped another holiday get-together this weekend and had to shoo Mo's sister, Molly, away because she has a sore throat. That left the following as the highlights of the weekend: (1) Goo gooing with Hope (2) Eating a meatball sub and (3) Scoring two consecutive Bingos at Scrabble ("Genitals" and "Paginate.")

It might be easier if Hope had an outstanding weekend, but she didn't. She's had a tickle in her throat the past few days. Her breathing has sounded terrible. The Prevacid has yet to kick in and the reflux through her nose has come in torrents. Falling asleep seems difficult. Often, she'll doze for about 10 minutes, then awake screaming.

Hopefully, she'll kick whatever it is soon. She's had a better evening than afternoon; she's getting her extra-strength, cold aversion Synagis shot tomorrow and her name, after all, is Hope.

But it's still cause for anxiety. And tough lessons. I learned this one the other day: No matter the hour, the duration of your daughter's tears, how many times you've wondered whether you should call the pediatrician or how logical the sentiment can seem, never -- never, ever, never -- say something dumb like, "Y'know, sometimes, I don't like this very much." It seemed like an honest assessment. I was worried sick and had heard other guys say far worse (a friend described the first 2 months with a newborn as "100 times the work of a puppy and half the rewards.")

Mo didn't want to hear it. And why should she? Whatever anxieties I have, she bears fifty fold. She's taking a six-month leave of absence from work, so this is her life 24-7. I'm a few weeks into hunkering down and already jawjacking. She's an old pro, having been ordered on bed rest at the beginning of October. That's three months of nothing. Such solitude may suit Thoreau, but it's driving Mo bonkers. She has a few house guests, 1-2 a week, but we try regulate them to keep germs at bay. It's a week before Christmas and the only shopping we've done is online.

"It's all so isolating," Mo said. "I get depressed sometimes. But Hope is worth it. I'm sooo happy she's home, so what's the alternative?"

We both know it. When Hope was born, we set Christmas as a goal for taking her to the hospital. We beat it by a month. We're not keen on returning, so we need to hunker down, figure this out and maybe take up macrame or decoupage.

See you in spring

As if the weather isn't reason enough never to leave the house, our pediatrician gave us another yesterday: We need to do everything possible to ensure Hope doesn't catch a cold.

If she does, it could be bad.


Hope's floppy windpipe, tracheomalacia, causes her to breathe heavily. Its severity comes and goes. Sometimes, she sounds like a gentle pigeon cooing. Other times, it's like a heavy smoker or asthmatic. When she's in a good sleep, it's practically non-existent. The video above is on the loud end of typical.

Tracheomalacia complicates feeding, but mostly, it just sounds bad. It doesn't hurt her and it's supposed to improve in about six months and disappear in 1-2 years when the cartilage hardens. But if Hope gets a cold, her airway may not be able to withstand heavier breathing that comes with an infection and hospitalization could be likely.

So avoiding colds is ideal. But how? Practically everyone we know has some sort of sniffle, snort or sneeze nowadays. Many tots get 8-10 colds a year.

We have a double-barrelled strategy whose crux is becoming hermits. Luckily, I've been training for this moment for years. It could be harder for Maureen. She has friends.

On doctor's orders, we're avoiding all holiday get-togethers, the mall, restaurants, present exchanges and fondu parties. Hope only leaves the house for doctors' appointments until April. We'll minimize visitors, wash our hands to their bones and wile away the hours by loving our daughter to pieces, playing games, watching bad television and eating lousy Midwestern comfort food like this monstrosity I whipped up with a few cans of soup and fake biscuits.




Hope didn't eat a bite (smart kid) but still put on 5 ounces in two weeks. She's now up to 4 lbs., 4 oz. and grew a half-inch to 17 inches.

The other half of the strategy is a Synagis shot. It's a super-duper drug to avoid respiratory infections that is recommended for premature babies or those with breathing difficults. It's hardcore: About $1,000 per monthly shot through the three months of winter. Insurance is often reluctant to pay, but Hope should qualify. If not, we'll eat the cost, begrudgingly but fully aware there's no alternative.

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?

NICU rhythms

After five days, we're slowly readjusting to the unique rhythms of the NICU. It's a place of paradox: Both peaceful and stressful, miraculous and tragic. No one wants to be there, but there's nowhere you'd rather be considering the circumstances.

We forgot how wonderful it is to hold a baby in our arms. We love Hope's soft skin, running our fingers through her auburn locks, staring straight into her eyes and wondering what she'll look like tomorrow. Best of all, we can gaze into her face without a mess of tubes, wires or oxygen apparatuses. Because he couldn't breathe without oxygen, we had unencumbered views of Will for about 10 seconds after his delivery and again when he died.

So that's been such a blessing with Hope. It feels so right to hold her close and whisper ga-ga-goo-goos. It's so tranquil you can almost forget that two of the letters in NICU stand for "intensive care." But you can never let your guard down. You know you shouldn't, but can't help it: One eye always is focused on a screen showing Hope's heart rate, breaths per minute and oxygen levels throughout her body.

That's the duality of the NICU: Utter relaxation peppered with frequent worry. If her oxygen levels fall below 88 percent, a persistent ding-ding-ding alarm sounds. If it falls below 75 percent, it changes to a jarring DANG-DANG-DANG and the nurses come quickly.

Fortunately, there's less cause for worry these days with Hope. She seems to be doing well. She's drinking breast milk from a bottle and the amounts increase daily. Her heart abnormalities haven't necessitated intervention. She's about a half-degree away from being moved from a warming incubator to a crib. And docs are tantalizing us by sprinkling phrases like, "When you take Hope home ..." in conversation.

We haven't mustered the courage to ask when that might be. We're big into jinxes and that seems like the ultimate no-no. And Hope still has work to do. One of the things about hanging out with doctors 10 hours a day is you learn scary words like "Tracheomalacia." Basically, that means Hope's trachea -- the windpipe -- is a bit floppy and not fully developed. It goes away with time, but it causes her to make wheezing motions. Also, the girl's got to start chowing down. She's lost about 3 ounces since her birth, which isn't yet a cause for concern. And neither us nor the doctors know whether her genetic condition will complicate things.

Until then, we wait and count our good fortune. We prayed like hell we'd never have to be back. Now, we miss it instantly when we leave.