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
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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
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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."