Monday, December 31, 2007
It feels good.
Rope-a-Hope is finally dozing contentedly after winning a pitched battle with 2 ounces of breast milk, Big Mo is boning up on Gastroesophageal Reflux Disease in anticipation of a Friday appointment with yet another specialist, Lulu is at my feet wondering why it's suddenly wrong to eat kitty litter, and no one cares where the cats are.
Mo and I talked about the year and agreed the best description was challenging and stressful but ultimately rewarding. I remember last New Year's Eve, singing karaoke with my family and feeling a bit sad that I didn't know any of the words to the American Idol songs and didn't have any reason to because we didn't have children. To borrow a phrase from my pal Brooklyn Salt, Mo pulled the goalie in June. We'd actively tried for about four months and were starting to feel blue.
Two weeks later, we wrote Will a long note to mark the 2-year anniversary of his death, sprinkled some of his ashes on his tree and told him we needed to stop actively mourning him and move on.
A month later, Hope was conceived. Three months of bliss followed. Next came six months of anxiety and about 15 ultrasounds when we returned from two weeks in Greece, Egypt and Turkey to learn that tests showed Mo had an elevated risk for Trisomy 18, a condition that kills newborns in their first week or so. We learned much later the protein marker that triggered the elevated risk also is thought to also be one of CdLS, a fact apparently unknown to our entire medical team.
That's a long way of saying it's been a weird year. But wowzers. What a reward.
Hope is 2 months old today. We know the challenges ahead are vast. Even without Hope's medical issues, this parenthood stuff is tough. It's humbling to work like hell at something for 2 months and still realize you are mediocre "pat on the head for trying" at best. It's humbling and an honor that you are the one charged with making this dimply fussbudget happy.
We fed Hope as the final minutes of 2007 ticked away and whispered her our New Year wishes for her. They're simple: stable health, a life without pain, grow and develop the best way she can and get big enough so I can tote her around in a Baby Bjorn while I exact ping-pong revenge on her mother.
Happy New Year, party people. We hope it's splendid.
Wednesday, December 26, 2007
One of the dangers about blogging about yourself -- as opposed to say, crazy TV commercials from the 1970s -- is that, sooner or later, you start to view events not as life but content.
Hope had constipation for four days and didn't soil her diaper? I bet there's a parable there about keeping your emotions bottled up. Maureen got desperate and actually made Tuna Helper? Instant punchline!
So it was on Christmas Day, when I caught myself, Flip Video Camera in hand, waiting for something funny to happen and said, "Enough. You are a freaking loser."
I can get a bit obsessive. Since I met Mo in 2000, I have had the following compulsions: Tennis, chicken, watermelon, ping pong, jogging, baking muffins, singing songs about our cats, setting the world record at Arch Rivals, the plight of the American Indian, the supermarket crane game, homemade video and my pal Lulu, among many others. Usually, I'm single-minded in my pursuit for about three weeks, then move on to another obsession.
So I put the camera down and actually enjoyed the holiday for what it was -- a nice day with big Mo and Hope -- and not as something about which to pontificate.
This blog has been a great outlet during a difficult period. It's cathartic and helps sort through a jumble of emotions. But sometimes I err too much on the most flattering side of our lives -- the part where we're one big happy family, standing strong in adversity, sharing a knowing chuckle and maybe learning a few things.
That side exists, but so does a not-so-nice part that is still trying to figure all this out, still hurt and just now beginning to grieve the loss of typical child-rearing. Blame high expectations for the holiday or general fatigure, but it's been a rough patch. We're still raw from the news about her heart condition. I have moments of anger and self-pity. Mo has moments when she thinks I'm a total ass. We both get jealous of friends with healthy babies, then feel guilty because we do.
We feel isolated. The pool of people who can relate to losing a child to a rare genetic condition that supposedly doesn't recur, then having another child with the same problem is limited to say the least. So we talk to each other. Sometimes that works. Sometimes, not so much.
We walk delicate lines, loving a child with special needs. There's joy she's home, but sadness over Hope's condition. We're proud but scared, alternate optimism and despair, fall deeper in love daily but wonder what sort of life she'll have. We don't want to discard our expectations, but don't want to be naive. We want to cherish each moment, but sometimes fear the future. We want to be honest about her issues, but protect her as well.
When Will died, I had another obsession: I would honor his life by becoming a better person. I volunteered, became a Big Brother, started going to church and smiled at strangers.
That lasted a while, then I switched to a more manageable system of handling grief: I'd feel however I wanted.
That sounds pretty good right now.
Monday, December 24, 2007
Powered by GoodWidgets.com
Sometimes, amid the hubbub and anxiety, we lose sight of what's important. It's Christmas, and we did it.
Seven long weeks ago, that wonderful and nerve-wracking Halloween, we set a modest goal to have Hope home by Christmas. We beat the pants off that deadline. Since then, it's been great, hard, scary and busy.
For a while there, schedules seemed to conspire against Christmas. We couldn't agree on the right photo for a card. Since Hope can't leave the house except for doctor's appointments and I don't get home until 7 or 8, neither Mo nor I had a spare minute to think about presents. A tree seemed like an afterthought. Months ago, in an uncustomary fit of charity, I took pity on a co-worker scheduled to work multiple holidays and agreed to work Christmas.
But we may just pull this thing off yet. We went into holiday overload this weekend, scrambling for a last-minute tree, mailing out cards by the dozen, finagling the perfect roast and snatching up toys for Hope. It's not as easy as it seems: What do you buy a 4 1/2 pound girl who already has two pairs of every premie outfit at Babies 'R Us?
Mo and I are forgoing presents this year. Being hopeless romantics, we decided our new garage door was our gift to each other. Plus, Mo already gave me a beautiful gift on Halloween. And I give Mo the gift of my awesomeness every day.
Usually on Christmas, we wake up, eat breakfast, open presents, then head over to the Feighans for more of the same. Things are all a bit different this year. Mo's father had knee-replacement surgery last week (Big Beef is doing fine), her sister, Molly, flies back to New York that morning, I have to work at 10 and we're all under quarantine.
So, as often is the case, things aren't exactly as we planned. But we'll adapt. It's what we do. And what's most important is sleeping peacefully, cooing away and oblivious to all this fuss. Hope's home. She's where she belongs. So yes, it already is a great Christmas.
Friday, December 21, 2007
After a rough few days, it’s always good to end the week on a smile.
Wednesday, December 19, 2007
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.
Monday, December 17, 2007
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.
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.
Sunday, December 16, 2007
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.
Friday, December 14, 2007
I wasn't around, but Mo reports it was the real deal, an honest to goodness "Hey, I see you doing this, so I'll do it too" moment. Who am I to argue?
Obviously, it's a cool milestone and encouraging. Hope is about 6 1/2 weeks old (3 1/2 weeks, gestationally) so she's right on schedule for smiling. Of course, we haven't been able yet to duplicate the moment, but here's a facsimile:
Tuesday, December 11, 2007
We were about 10 minutes into "Sicko," when we realized the indictment about the health insurance industry may not be the best choice for Saturday night diversions.
Scene One: A guy losing two fingers and being told by insurance to pick which one he wanted.
"Uhhh ... you sure you want to watch this, Mo?"
Scene Two: A couple losing their house because of medical bills.
"Maybe we should just play Scrabble?"
Scene Three: An insurance executive telling Congress her job is to deny 15-25 percent of claims, regardless of merit.
"Alright! Turn it off already," Mo relented.
Like it or not, we're now at the mercy of insurance companies. It's something we'd rather not think about much. We know some daunting bills may be in our future. We're looking at co-pays of about $150 a month alone for specialists to maintain the status quo.
But mark today on your calenders: Thank God for soulless HMOs!
We're happy to report that Hope is approved for five Synagis shots. That's the hardcore monthly dose that costs $1,000 a pop and wards off colds and flu strains for preemies or newborns at risk for respiratory problems. We heard it could be a hassle and insurance companies were often reluctant to pay, but it was easy-squeasy and she'll receive the shots until the cold season ends in April.
That may be because we found a good pediatrician. Our man Muller called the insurance stiffs, lobbied the case and seems to be reliable about returning phone calls, writing referrals and being uber-thorough with Hope. We were sweating it for a while and had scheduled fall-back appointments with other pediatricians, fully expecting that finding someone we liked would be a struggle.
We're also grateful that he agreed to ease Hope's wait to see a gastrointestinal specialist by writing a prescription for infant Prevacid. The drug -- which is a lot like Zantac (not to be confused with Xanax) -- should help with her reflux. It's grown worse lately. Sometimes, she spits up food through her nose immediately after feeds. Others, she waits until it's a fully digested, chalky protein and lets it loose two hours later through her nose.
She's right on schedule. We've learned that reflux -- or Gastrointestinal Reflux Disease -- tends to worsen about 1 month after birth because infants' stomachs began producing more acids.
We have only moderate expectations for the Zantac. If nothing else, it should ease some of Hope's discomfort. But it's exactly what we wanted to try and we're grateful the doctors thus far have been so cooperative.
So who's with us? Three cheers for corporate muckety mucks making decisions about our health through spreadsheets in glass towers! Hip hip, hooray.... Hip, hip, hooray ... Hip, hip ... Aww, the heck with it.
Monday, December 10, 2007
Concerns about her hearing were confirmed today when we bundled our girl up at 6:30 a.m. and drove 40 minutes on icy streets so audiologists could attach wires and probes to her head. Mo held her for two hours as Hope slept in a cold examining room while soundwaves were pumped through tiny earphones. Using EEGs, the test measured small differences in brainwaves during different pitches and sounds.
Hope flunked an earlier screening in neo-natal intensive care and a similar test found mild hearing deficiencies in her right ear and moderate ones in her left. Today, the results were worse: Moderate in the right; little perceptible reaction in the left. Normal conversation is 60 dB (120 for Mo.) Hope can hear at 80 dB. Hearing loss in adults begins at 15 dB.
It sounds crummy, and it is. But it could have been far worse. Hope's deficiency is a conductive hearing loss. That means the inner-workings of her ear are structurally sound and there's no nerve damage. Instead, something in the outer reaches of her ear mutes sound from reaching inside. It could be malformed or absent tiny bones, fluid or slow development that has kept the eardrum from opening.
The good news is it's treatable. We were referred to yet another specialist (three and counting.) This time, it's an pediatric ear-nose-and-throat dude who will take a harder look Monday. The recourse could be small tubes to open the canal, medicine that would drain fluid. hearing aids or surgery, which isn't likely anytime soon because of her size and age.
The solution, of course, depends on the cause. But none seem entirely permanent. The hope is she could grow out of her problem with a bit of intervention. But I could be making that up. I have a tendency to do that. I am a journalist.
We'd love to say we're surprised, but we're not. CdLS kids often have tiny ear canals that take longer to develop and prompt false positives for deafness.
It takes a lot to startle Hope. That may be because she's cool as a cucumber, but she's also the daughter of two people who aren't known for their meekness. We can scream. We have a barky dog. Our smoke detectors blare so much we take out the batteries about three times a week. The Girlmore Girls chat it up with pretentious dialogue on reruns every day at 5 p.m.
None of it has phases Hope. Curious -- and a bit sadistic -- Mo banged pots and pans together the other day. Hope twitched a bit. Mo thinks.
The silver lining is that it's good to get on top of this stuff early. Master of the obvious statement of the day: Hearing is important. It helps with speech. It helps Hope bond with us. It helps when you order Thai food.
So we need to tackle this soon. Hopefully, we can get a game plan after meeting with the ear-nose-throad dude on Monday.
There's a lot to digest all at once. I liked it better when there was so little report I posted dog videos. When we think about everything Hope faces -- heart, hearing, developmental and physical problems -- it is overwhelming. We have our tears. We feel like hell. We question God. We get mad and snap at each other.
But then we have quiet days like this and we remember why it's tough to feel bad for too long.
Saturday, December 8, 2007
Powered by GoodWidgets.com
We bought a garage door the other day. Once adorned with retro eagles that Mo insisted I remove when we moved in, it broke every three months. My parents taught me how to deal with these problems: Ignore them until you can't possibly anymore, then apply the cheapest fix and forget it until it breaks again.
After years of adhering to the tradition of turning small problems into expensive ones, we followed the door's lead and broke down. Returning home from work, I was eager to see it.
I made it about three steps into the garage when Mo yelled at me through the side door.
"What are you doing?" she barked. "Get in here! I need a break."
That's life now. Five minutes looking at a door is wasted time. I'm typing with two fingers and trying to coax Hope back asleep. Mo is napping. She's making up for last night Afflicted with what my father-in-law delicately calls "the creeping cruds," I decided I couldn't help with Hope's feeds and needed a bubble-bath and nine hours' sleep to slay whatever ailed me.
Call it what you like. I consider it a valiant sacrifice to shield my daughter from germs that had nothing to do with eating six slices of pizza in 10 minutes.
Like all new parents, we knew this would be exhausting but weren't prepared for how much. From afar, it shouldn't seem so hard: You burp, feed, fuss, coo; change a few diapers, apply some creams now and again and -- voila! -- wile away the next three hours completing jigsaw puzzles or online enrichment courses.
Of course, it's all-consuming and unrelenting. I'm bushed. Mo's bushed. We're learning that raising a child with unique challenges is probably like raising a healthy one but magnified. It starts with the doctors: In addition to a pediatrician, Hope sees a cardiologist, audiologist, geneticist and physical therapist. And the spit-ups and rashes that would normally be scary are petrifying. Mo is now navigating the maze of health care and HMOs. We'd like to add a gastrointestinal specialist to the list to evaluate Hope and address her spit-ups. It's supposed to be standard for CdLS kids. Our network has pediatric GI docs. The next opening is May.
But big deal. It's work. What great in life isn't? And Hope's doing good, home now for three weeks and notching small landmarks. We don't panic anymore when we don't hear her for 3 minutes. She's becoming more emotive every day, sticking out her tongue, fixing her stares and flashing dimples like she was at the county fair. We're not counting her breaths anymore. But we are counting our blessings.
Friday, December 7, 2007
And a dog video that has nothing to do with anything, isn't remotely current, but makes me smile and think of summer. The humper is Lulu. The pregnant lady is Mo.
And to think, Maureen says I don't impart useful information on this blog.
Tuesday, December 4, 2007
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.
Sunday, December 2, 2007
(Click here if slideshow doesn't load)
It was 2:30 in the morning. I was trying to be a hero. I confirmed I'm not.
"C'mon, Hope!" I snapped, the dribbles of milk squirting out the sides of her mouth; the inconsolable tears complementing her wails. She was one hour into a two-hour fit. "Gimme a break! You can't be this upset! Stop exaggerating!"
I love my daughter like crazy. At that point, I'm ashamed to admit I didn't like her very much. I tried everything. Cooing. Oohing. Ahhing. Patting and cajoling. Nothing worked. Deep in the night, fighting sleep, I felt like a failure.
I volunteered for an extra feeding shift to help Mo get a solid six hours. Instead, the dog started barking, the cats were whining and Hope wouldn't stop crying. Mo awoke to me ordering the dog to "GET!" No one was happy. It was frightening because it confirmed a few things that are tough to admit. My little girl's beauty won't magically cure my grouchiness. And my parenting skills need some work.
Somehow, I'd deluded myself into thinking that being a funny uncle and cool guy to drink beer with would make me a great Dad. When I fantasized about fatherhood, I was always giving poignant advice, making hilarious fart noises and letting the kid win at Candyland. The daydreams didn't involve techniques to help her pass gas or neck angles to ease her wheezy breathing.
Feedings are huge to us. Hope isn't going gangbusters with weight gain. She's still about 4 pounds, 2 ounces. So we need to wake her every three hours to try to force a bit more food down her grape-sized stomach.
Feeding is a major pain with CdLS kids. Some can never coordinate drinking from a bottle and need to have tubes surgically implanted to their stomachs.
So the fact that Hope can figure out this breathe-suck-swallow trifecta is encouraging, but some days are better than others. Sometimes, she sucks it down like a champ, falls asleep on my shoulder and listens to my rambling life lessons ("The Detroit Tigers have significant holes in 2008." "Kitties are furry and fun to pet.") Other times, it's a struggle. She cries like crazy when I pick her up, kicks it up a notch when I change her diaper, then goes into full-on "Don't Mess with Me, Buster" mode when I feed her. She'll straighten her legs, try to wiggle away, cry some more and shoot me bad-juju, hoodoo voodoo evil eyes. A good portion of the milk from the bottle dribbles out her mouth. She'll forget to breathe and turn blue or spit up through her nose. She'll fall asleep mid-feed or get a gas bubble stuck in her stomach that drives her batty.
There are times, blurred by sleep deprivation, that I conclude, "I have no idea what I'm doing. My daughter is only a month old and already hates me."
Mo is much better. It can still be a challenge, but she is adept at picking up on Hope's cues, reading her body language and anticipating her needs. So far, I've tried to compensate for my lack of innate skills by volunteering for lots of errands. But I realize that Hope doesn't care how many times I go to Kroger, fix the garage door or update the blog.
It's a blow to the ego, but I have to conclude I'm just not a natural at this stuff. So I woke up Sunday morning and did something else that doesn't come naturally.
"Hey, I feel terrible about last night," I told Mo. "You're good at feeding her. Maybe you could help me improve."
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.
Wednesday, October 31, 2007
Enough about us. The cute girl is Hope. She is awesome.
Hope was born on Halloween in 2007. She was teensy: 3 pounds, 15 ounces at 37 weeks, most of which was a magnificent shock of red hair and big, beautiful eyes.
Doctors didn't need long to diagnose her with Cornelia de Lange Syndrome. They had experience: Our son, Will, also had the syndrome. He lived 89 days in Neonatal Intensive Care before passing away Jan. 12, 2005.
Cornelia de Lange, CdLS, is a genetic syndrome caused by 1-2 stray genes. Genetically speaking, it's dominant: If you have the gene, you have the syndrome. So it hardly ever recurs in families, except very rare ones.