Friday, November 30, 2007
Wednesday, November 28, 2007
"All this food was getting shoved down my throat," she complained. "My sister, Anne, kept rubbing my back. I kept thinking, 'Stop it! This is very uncomfortable. I don't like this at all!' But I couldn't talk. I had food in my mouth.
"Do you think that's how Hope must feel?"
I'm no dream analyst, but that may mean something.
Hope is four weeks old today. It's been 12 days since she came home. Mo seems to be digging the new mom thing. She's very protective, eager to ease Hope's worries and delights watching her little cheeks become chubbier daily. She's positively thriled, but exhausted.
We have two major observations after one month, neither of which is surprising: It's amazing how much we love this little girl, but weren't quite prepared for the level of work. Feeding is major production. Every three hours, we try to cajole her into eating just a bit more. That lasts 30 minutes and is followed by another 30-60 minutes of holding so she doesn't spit anything up. Often, that means coaxing her to sleep, then realizing we need to wake her up in a half hour to repeat the process.
Mo does most of the heavy lifting, and it's all-consuming. A scarier sign that Mo may need some diversions -- crossword puzzles? stuffing ships into bottles? -- came yesterday.
Mo looked at me and uttered truly frightening words: "I may actually be missing work a little."
Monday, November 26, 2007
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.
Wednesday, November 21, 2007
OK, we do that most weeks.
But Thanksgiving has its own rituals, which I've learned to love since I first shared the holiday with Mo seven years ago. She makes the one dish that no one minds if she screws up, corn casserole. We break bread with family friends, the Wollborgs. And we end the feast with the decades-old tradition of corn kernels. Everyone gets five, which are supposed to represent harvest seeds. We go around the table, forking one over as we give thanks for something specific. Over the years, the kernels have shrunk as the families -- and complaints -- have grown. More than a few times, I've tried to eat my kernels before it was my turn and grumbled when someone stole my stock answer, "I'm thankful we only do this once a year."
We're going to miss the tradition this year. Hope is simply too small and too new to the world to expose to so many smells, germs and noise.We're bummed. Because we have plenty of fodder for those kernels this year.
I'm really bad at this stuff, so let's just jump away.
- We're thankful to God, the universe, the Big Kahuna or whomever for delivering us Hope. Mo had one constant prayer when her pregnancy became difficult shortly after Memorial Day: "God, please let us take this baby home." Hope is cooing away as I type, snoozing contentedly and ignoring "Oprah" on the television. Smart baby. I prayed for a healthy child. So far, so good, but work remains before that one is answered. We both prayed for strength and continue to persevere.
- We're thankful for our families who have been there with a gracious ear, shoulder of support, errand to run and understanding when we didn't want to talk. Their generosity has been big and small. They dropped off food when we didn't want to cook; cleaned our house when even we couldn't stand the cat hair; visited when we needed them; didn't complain when we told them to stay away; tolerated long periods of silence during the difficult months preceding Hope's birth; shopped for us; and were simply there when we needed them. Everyone has come up huge. We're very lucky.
- We're thankful for friends near and far, especially those who've been better to us than we have to them. In the five months, 14 ultrasounds and numerous echocardiograms since Mo's pregnancy became high-risk, we were often so consumed in our own troubles that we failed to recognize those of others -- or their joys. Your unflinching support reminds us that friendship doesn't keep score.
- We're thankful to doctors and nurses who guided Hope through an uncertain few days and delivered her to where she belongs. We had mixed feelings about the Beaumont NICU after the birth and death of our son. We were impressed by their competence, but not their attitude. This time, they seem to have gotten the message that we don't need pity, just understanding.
- We're thankful to our employer, The Detroit News, and our colleagues for understanding and flexibility. We've done our share of grumbling over the years, but through it all, we've never worried about missed time or their compassion.
- Mostly, we're thankful for this gift. We don't know how things are going to end up. Hope's presumed condition, CdLS, is frightening in its totality. We can only take learning about it in limited doses before wanting to curl up and cry. But we don't need to solve everything in one day. So Hope isn't just a beautiful, squeaky, big-eyed beauty. She's also teaching us much about letting go of our expectations, savoring quiet moments, taking victories as they arise and giving thanks for what we have, rather than being resentful for what we don't.
So there they are. Six kernels, Clem and Beef. Please count the extra toward next year, so I can duck out early and eat more pie.
Tuesday, November 20, 2007
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?
Friday, November 16, 2007
A few hours ago, I held my daughter. The doorbell rang. I stood up, cradled her in my arms, walked 10 feet and answered it.
Mundane? Sure. Amazing? Quite.
It happens every day, but it's profound beyond words. Our baby is home.
For the first time in 16 days, Hope Beatrice isn't connected to four sticky wires. There are no screens to monitor her heartbeat, respirations and oxygen levels. We have no tests tomorrow. There are no nurses telling us when we can bathe or weigh our child. We can pick her up and move beyond the five feet of wire that anchored Hope to her crib.
The moment Mo has prayed for since Memorial Day came about 3:15 p.m. There were no grand pronouncements, parades or quizzes. The doctors wished us well, gave us Hope's discharge papers and sent us on our worried ride home.
It's bliss, absolutely and truly, and moving in ways that I'm sure I'll be better able to capture tomorrow. Now, words fail me. We're humbled, awed, terrified, overjoyed, thrilled, and quite exhausted.
Mo is in the nursery, trying to soothe her baby. I'm on the couch envying my dog, who is asleep under the coffee table, no doubt dreaming about eating toilet paper. My brother and sister, Steve and Beth, are in from the East Coast, droopy-eyed settled comfortably in their happy pants.
It's been a long, nerve-wracking, rewarding and blessed day, and I'm sure a long night will follow. We're on our own now. Our baby is home. We can barely put one foot in front of another.
I'm in no shape for profundities, but I wanted to post because an update because I know a lot of you are curious and knocked on wood when a dork on the Internet asked you to. We're truly thankful for this amazing network of love, support, good will and prayers that extends from Singapore (Hi Pam!) to Maine.
Hopefully, this is the end of a crisis and start of a journey. Things won't be easy, but now, they're exactly as they should be. We couldn't be happier. Or sleepier.
Thursday, November 15, 2007
News flash: Hope has taken to the nipple.
Mo eagerly reported Wednesday that our miniature milk maniac has figured out that good stuff comes from Mom's breasts. A week ago, Mo had all but given up on the idea. The mechanics seemed off. Hope didn't seem keen on the prospect. Her mouth was too small and appetite too big.
A skeptic, Mo heard all the talk of the miraculous bonding experience between mother and child. She shrugged most of it off, content instead to harness oddly industrial apparatuses to herself and transfer the milk to bottles. But she's become a convert: "I was like 'Wow! I'm giving nutrition to my child. That's pretty neat."
Like a lot of other newborns, Hope's a chugger. She's a bit like her Dad was in college: Drink, drink, drink, forget to breathe, then pass out. But Hope's flow seemed natural with her mother. She paced herself. She took breaths. She had to work a bit harder, but seemed more sated.
So that's good stuff. We're pleased and proud that Hope is able to try new things, struggle a bit and eventually figure them out.
That's a good omen because soon the real work begins. Hope is tentatively set to come home Friday. Mo has visualized and prayed for the moment for months. We were up until midnight vaccuuming, dusting, screwing down changing tables and worrying like mad.
I feel a bit like Robert Redford in "The Candidate." We've won the campaign. The confetti is raining down. We're hooting. We're hollering. We pause and ask, "What do we do now?"
Tuesday, November 13, 2007
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.)
Saturday, November 10, 2007
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.
Wednesday, November 7, 2007
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.
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.
Monday, November 5, 2007
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.
Sunday, November 4, 2007
Saturday, November 3, 2007
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.