Another term we'd rather not know

It was one truism in the summer of the ultrasound: The tests you spend half the night fretting about turn out fine; it's the ones you approach with calm that bite you where it hurts.

Never fail, during the 15 or so ultrasounds and echocardiograms preceding Hope's birth, we got good news when we were expecting bad and bad news when we were expecting none.

It's a truism for a reason. Today, Hope had a routine follow-up appointment with the cardiologist to check on a few abnormalities. Logically, we know Hope's heart issues are the ones that should keep us up at night. For whatever reason, they don't.

It could be time to worry.

The test revealed status quo for Hope's blood pressure, which means her heart is doing its job and getting blood where it should. But it found signs that her heart is working too hard to get it there.

Another new medical term we wish we didn't have to know: left ventricular hypertrophy. That means her heart's main pumping chamber, the left ventricle, is thicker than it should be because of overuse. Like a muscle, it gets bigger when it's asked to do more. The condition is not uncommon after a lifetime of high blood pressure. Hope is seven weeks old.

The cardiologist said it appears to be a mild thickening, which is good. But the problem either has developed in the month since she left the NICU or wasn't spotted there. That is bad.

We're not sure of the protocol. The good doctor has no idea what is causing the thickening, so like a lot of medicine, it's wait-and-see time. We have a follow-up appointment in six weeks. If the cause of the thickening is Hope's heart, there is medicine to stop the thickening but not reduce it. If something else is causing the issue the approach would vary accordingly.

Obviously, this is not the news we wanted a week before Christmas. There's no polite way around it: This sucks.

There's a naive, clinging-to-hope part of us that doesn't believe the test. That's mostly me. Hope had four echocardiograms in the NICU and each doctor had a different take. That's understandable. Her heart is about the size of a Macadamia nut now so there's ample room for interpretation and miscalculation.

But we've also known since late July that Hope was going to have heart issues. They always seemed to linger in the background as just another log in our bonfire of worry. They don't anymore.

If anything, today reminds us that every day with Hope is a blessing. It's corny as all get out, but it's true. Everything we've read about CdLS babies leads us to conclude the first two years are the most critical. That means we need to go against my nature as a cynic and Mo's as a worrier and never get ahead of ourselves, savor the moment and plant extra kisses on our sweet daughter's forehead.

Encouraging clues

I went back to work yesterday. It had to happen sometime. They pay me.

It was very strange and hard leaving Mo to do the daily heavy lifting of watching little Hope in her crib all day, dealing with doctors, changing diapers, taking temperatures, bottle feeding and sneaking off to watch "Gilmore Girls" reruns.

But it's good to get into this routine. Docs aren't saying for sure, and we're naturally cagey, but Hopesy may be coming home fairly soon. Clue No. 1: We were told to bring in her car seat to make sure she can sit in it for long periods. Clue No. 2: Most of the conversations with nurses now involve care techniques, not questions that start, "How worried should we be about ..." Clue No. 3: The doctors say she could come home fairly soon.

See how we put that together? We're going to start a detective agency soon.

Naturally, we're ecstatic and nervous. We're so proud and humbled by this strong, fussy and cuddly little thing we've produced. She seems to face a challenge -- like how do I drink all this milk without choking myself? -- take some time to figure it out and improve. That's encouraging. So is the fact that our daily, little worries on Saturday are never the same on Tuesdays. I guess that's progress.

We're not holding the doctors to a date and are reluctant to jinx ourselves by announcing it (Quick: Everyone knock on wood.) We know things move slow in the NICU. We know dates could change. More than a week ago, one of Hope's pod pals was ready to go home. They had the car seat, the date and camera and were almost out the door. Now, he's back in an isolette. So we're not going to get too ahead of ourselves.

But we'll take it for what it is: A seeming endorsement of stable health.

It doesn't sound like much. But it is to us. And soon, the really hard work begins.

(PS -- We weren't kidding. Knock on wood. Now.)

Mojo, juju and fate

It's a funny word and we're still getting used to it: "Progress."

There wasn't much during 89 days with Will. But a glorious, straight line out of the hospital is developing for Hope. She's keeping herself warm and graduated to a big-girl crib. She's doing so well with her increased feedings that her IV is gone and there's talk the supplemental tube may be removed from her nose. And the fourth echocardiogram of her heart Friday spotted no new causes for concern, so the next one isn't planned for two weeks. In the whirlwind that's been the last 10 days, that might as well be next year.

Friday was Mo's 32nd birthday. It was blissfully low-key -- if you can discount the half-hour of dread we spent during the echocardiogram wondering if everything would go wrong. It didn't. Instead, Mo held Hope for about six hours, read her stories, doted on every wheeze and hiccup and micromanaged her husband's bottle feeding techniques. That sounds about right: Happy birthday, indeed.

It was a nice to get through the day without any drama. Three years ago, the Red Sox had just won the World Series, my mother was visiting and we had a child in the hospital who seemed to be improving. Will's progress was halted on Mo's 29th birthday when he stopped breathing for the first of three days. There were subsequent fits and starts, but he never really recovered after that.

So Friday was a big emotional hurdle to clear. I avoided posting yesterday in fear of jinxing ourselves. We realize all this talk of mojo, juju and fate makes us seem like we're two steps shy of sacrificing a chicken, but it works for us. And hey, Hope was born on Halloween.

We also know these comparisons to her brother aren't entirely fair to Hope. She's her own person and she's healthier than her brother. They're simply yardsticks to measure her progress. As much as we loved Will, we realized early on he wasn't long for this world.

That's not the case for Hope. We realize there still could be setbacks, but lately, we've allowed our fears to become more pedestrian: "We're going to have a newborn home. What are we going to do? Our lives will never be the same."

They won't, and thank God for that.

No asterisks

No complaints today. It was near-perfect by NICU standards. After a truly frightful night, Hope was terrific. We were there all day. And for the first time, her monitor alarms didn't sound once. No breathing desaturations. No racing heart. No missing probes.

So wow. Happy one week on Earth, Hopesy. You're doing terrific and we love you.

Good day with an asterisk

Hope is a week old today. Eight days ago, we were at Big Boy for a final meal before this grand journey. Between bites of Mo's favorite -- the Slim Jim -- we assured ourselves, "We can do this."

That's good advice today. It isn't easy. When Hope was an abstraction in the womb, Mo felt some control over caring for her. Now that our little one is her own being, the protection instinct is overwhelming. And when we can't, it's heartbreaking.

Last night was a bad reminder that progress in the NICU doesn't always move in a straight line. After a good day, Hope threw up, choked on her vomit, couldn't resume her breathing and needed doctors to pump air into her lungs with a bag.

It occurred about 20 minutes after a particularly slow feed, and her blunderbuss father blames himself for putting her back to bed too soon after she mowed down her food. She is, after all, a Kurth and Feighan, so one day the managers of taco buffets may cower in her presence.

We hope that's all it was. The doctors didn't seem concerned enough to change treatment (that we know of) and figure it's just something to watch. But it's excruciating. After we left the hospital about 10:30 p.m., we lay in bed, awaking every three hours around the time of her feedings, willing the phone not to ring.

It didn't, but feeding may be issue. Little Hope already has made us proud by quadrupling her daily dosage of mother's milk since Saturday, but she's still getting the hang of this simultaneous breathe-suck-swallow thing. Sometimes, she falls asleep mid-feed. Other times, she forgets to breathe. Give the kid a break. It's only been four days.

Kids with CDLS have trouble with reflux, though, so it's cause for concern. Early Tuesday, nurses put a feeding tube down her nose as a fall-back option in case she's reluctant to take the bottle. That upset me and her -- Hope ripped it the tube when her Grandma Clem held her -- but we need to embrace whatever will help her.

The shame of it all was the episode occurred during a particularly good day. So wise ol' Mo is considering it a good day with an asterisk. And that's the right approach in the NICU, where progress is often measured in weeks not days.

By that yardstick, it's been a wonder week for Hope. She was born. She endured a bunch of tests and passed them all. Her stutter breath is improving. She's becoming a pacifier sucking champ. She's feeding. She's bonding big-time with Mom and seems to tolerate her father, too.

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.

Fate and Hope

After our son Will died, I vowed never to write another blog.

That resolve was weakened a few times, but never broken. Bored, I once toyed with a blog chronicling my stuffed-animal winnings at the crane game. The idea lasted 10 minutes. As did my idea about filling cyberspace with musings about my dog, Lulu. Both were too trite, too full of piffle to bother.

Mostly, though, I never wanted to write another blog because Mo and I never thought we'd be in this same situation again. And if we were, I promised, I wouldn't want to try to contort a difficult situation into a good one again with flowery words, witticisms and chin-up exhortations.

In the end, we didn't want to blog because we didn't want to repeat history.

Fat lot of good that did.

Nearly three years after Will's birth, Oct. 15, 2004, Mo and I once again are graced with a growth-restricted child with health problems and a genetic condition who likely will be in the hospital a while. Hope Beatrice Kurth is a 3 pound, 15-ounce, auburn-haired beauty with big, bright eyes, pudgy cheeks who looks like neither of us. She is a spitting image of her big brother. And it took doctors about four hours to preliminarily diagnose her with the same condition that contributed to his death.

We fought so hard, prayed so long and employed every superstition we know to avoid this fate. We were assured the condition they likely have, Cornelia de Lange Syndrome, is a random genetic mutation that doesn't strike twice. We read the fine print -- 1 percent of families have more than one child with the syndrome -- but barely acknowledged it.

Instead, we worked like the dickens to control outcomes that we couldn't. We developed rituals to ensure fate wouldn't strike twice. Will came out of the blue. Mo was 32 weeks pregnant, measured small on Tuesday and gave birth via a "not-quite emergency, but we better do this quick" C-Section.

When we learned Maureen was pregnant in March, we thought we learned our lessons and steered clear of bad mojo. We had well-defined taboos: Don't park in the hospital's parking garage during ultrasounds, don't arrive late and don't talk about lunch plans in the examining room. We did all those things with Will, and he was born about 17 hours later.

This week, walking through the same Neo-Natal Intensive Care Unit we swore we'd never again visit, exchanging awkard hellos with doctors and nurses we never thought we'd see, I was struck by lessons from high school Latin.

My teacher didn't always comprehend the concept of "Latin," so we read a lot of Greek fables. They had a recurring theme: You can't escape fate. Achilles' mom could dress him up like a girl, but he'd still die in the Trojan War. Oedipus' dad could leave his son on a mountain to die, but he'd still grow up to kill him.

You can't escape fate. And having a child with challenges is ours.

That's where the morbid analogy ends. Those are lessons from tragedies, and Hope is anything but.

She is a wonderful, beautiful, squeaky little fussbudget who is already making us so proud. Her first three days on earth were chock full of tests: three echocardiograms to pinpoint progress with a few heart abnormalities; an EEG on her brain to ensure she didn't suffer seizures in utero; a full skeletal X-ray; and ultrasounds of her brain and major organs to verify they're all OK.

They are, and she's passed all her tests with aplomb. She's already doing little things that most parents take for granted but amaze us because Will never could. She's breathing on her own. She is drinking milk from a bottle. She has graduated from a heated platform that allows doctors easy access in case of emergencies to an enclosed incubator. Hope is doing so well there's murmurs a regular ol' crib could be in her near future.

Mo went home from the hospital today. She's still in a lot of pain from her C-Section, and it's so hard to leave your beloved little girl in the hospital. This is going to be a difficult, but rewarding journey. There's already been so many tears, late-night anxieties and big questions that can never be answered and will drive us crazy if we try.

But this is our fate, and we accept it. The situation may seem eerily familiar, but the details so far are better. Hope's delivery was as it should be: A nerve-wracking, hand-gripping, "Oh My God, What Are We Getting Into?" miracle. Unlike with Will, no one asked us if we related 15 minutes later. The doctors we used to view with suspicion are now kind. Most importantly, our girl seems to be doing well. So we count our blessings.

Some things haven't changed. The hospital soap still smells the same, the food is still lousy and the NICU still sucks.

But things will be OK. Sometimes, the fate you fear the most just isn't so bad.