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Monday, November 29, 2004

Get to work, samurai

My father is a lot like me: Gruff, more often than not seen with a hat and a master of jokes that, if you just think about them for few minutes, are really funny. Like me, there’s also a big pile of mush under his whiskers and sarcasm.

Two items never leave Will’s bed. One is a metal angel from our friend Jessi that’s inscribed with a quote from Willa Cather that reads, “When there is great love, there are always miracles.” The other is a spaghetti-legged, bendable samurai doll. It’s more comical than menacing, and even more so because it never leaves a plastic Ziploc bag that keeps it sterile. The samurai’s message: Be a warrior, not a worrier.

My father gave Will the samurai on the condition that, one day, he pass it along to someone who needs it more. My nephew, Matt, bought the doll for my father on the eve of his 2001 octuple heart bypass. It was bedside for last summer’s kidney transplant and several other scary hospital visits.

It’s a gracious gift. We have complete faith in the samurai’s power, but it better start working its magic pretty darn soon.

First, the good news: Will is gaining weight like a madman. Out of nowhere, he’s up to 3 pounds, 12 ounces and has gained almost a pound in about 10 days. We think it’s all in his eyes, but he’s showing the unmistakable signs of a gut and even a little double chin. It’s true what they say. Like father, like son.

The bad news takes longer to explain. Will probably has pneumonia. That’s not uncommon for those who are on ventilators for long periods of time. Respirators provide clear passageways for bacteria to get into lungs and cause infections. There’s also a possibility we may have passed something on to Will by kissing him so much. If that’s the case, he’s only got himself to blame for being so cute.

The pneumonia probably caused Will’s recent breathing troubles. The new plan is to give him antibiotics intravenously for a few weeks in hopes he rebounds.

Will also has had trouble spitting up food lately, which could have contributed to his choking episodes a few weeks back. So doctors have placed a feeding tube through his nose into his intestines. That cuts out the overrated middleman organ -- the stomach -- and gives him nothing to spit up. Additionally, Will is no longer receiving his usual meal of 1 ounce of milk every three hours. He’s instead receiving a small -- but ultimately equal amount -- steadily throughout the day.

It’s a lot to take in a day. Will, the poor guy, looks like he’s been through the ringer. He has an IV in his head, the ventilator in his mouth and a feeding tube in his nose, in addition to about four sensors throughout his body that measure temperature, heart rate and such.

The samurai may yet work its wonders, but it’s still appropriate for Will. The kid is a warrior. He’s handled his latest ordeal with a grace that continues to make us so proud. Sure, he’s cried, fussed and fidgeted, but Will seems to have an amazing tolerance. They keep throwing more challenges at the kid, and he keeps marching ahead, bright eyes blazing, hips a-wiggling and legs locked in defiance.

We love you, Will. Keep showing us how to be so strong.

Saturday, November 27, 2004

Weekend worriers



As eureka moments go, it was more pathetic than profound.

Weekends used to be our friends. That seems like a long time ago. Is this what adulthood is all about?

Last year, Mo and I had an ongoing rift that was the source of three years of arguments. She liked to party on Friday nights. I was the Saturday Night Kid. It was a big deal: Her Blockbuster Night was my Party Like a Rock Star Night. How could our relationship ever grow if our leisure time was so incompatible?

Somehow, we got married anyway. Now, our weekends are spent worrying about whether a doctor will take us aside yet again to discuss when we should consider a do-not-recussitate order for Will (the consensus: it's way too soon.)

Two weeks ago, we got that chat from a doctor after she returned Will to the ventilator. Last Saturday, we learned that Will probably has Cornelia de Lange Syndrome. Suddenly, going out on Saturdays instead of Fridays doesn't seem quite so terrible.

We now live in fear of weekends. We duck behind chairs when doctors approach. We stare at Will's levels for eight hours straight, warning ourselves not to get preoccupied but convincing ourselves everything would turn out fine if his CO2 count would just fall below 70. We vow to leave when he's doing well, but can't tear ourselves from him if he is.

So far, this weekend has been free of drama (knock on wood). The little guy controls our moods, however. When he opens his eyes and wiggles around -- like yesterday and Thursday -- our hearts swell with love and pride. We're confident that anything is possible, long odds are there to be broken and cherish all Will has to teach us about perservance, grit and the wonder of life.
When he sleeps all day and appears to have labored breathing -- like today -- we still love him like mad, but it's easier to feel sorry for ourselves.

I guess that's it. We're parents now. When Will does well, we feel great. When he doesn't, we're in the dumps.

All in all, Will is doing OK. He's in the midst of a remarkable growth spurt. Will is now tipping the scales at 3 pounds, 8 ounces or 1594 grams. He's gained 200 grams in one week. He gained 300 grams total in the five previous weeks. We're now calling him Li'l Fatso.

Still, he's remained on the ventilator now for two weeks, the longest he's been on life support since he was born. Will was scheduled to try the C-PAP (nose breathing tubes) for the fourth time last week, but he's rebounded slower on the ventilator than he has in the past. He's making slow gains, however, so they may try the C-PAP again next week.

That's it for now. It's Saturday night and time to party. How do I know? Mo's wearing her special sweatpants and has a vise grip on the remote control.

Sunday post script = Form held true this weekend. Will took yet another step back on Sunday. His breathing, which was labored Saturday, grew worse and they hiked up his ventilator settings and gave him another blood transfusion. He may have pneumonia. That would explain why he's gasping for air in short breaths that are similar to those when you cry. It' s a setback and probably delays efforts to try him on the C-PAP nose breathing tubes, which already have been pushed back another week. Will isn't doing as well as he usually does on the ventilator. We're worried, but tired of crying. Will's always made us love Mondays, so we're hoping he gives us another reason to tomorrow.

Thursday, November 25, 2004

Thanksgiving



Thanksgiving is our favorite holiday: No shopping frenzies or stress over the right presents, just lots of good food and company. We usually run the Turkey Trot in downtown Detroit, then head home for the first big meal of the day and a nap.

Today, we mostly hung out with Will. It was a good day. He's officially gained a pound, weighing in the morning at 3 lbs, 7 oz. It could be a short-lived milestone -- he spat up almost his entire evening feeding, then awoke in a Hulk-like rage and tried to tear out his ventilator tube (that's my boy!) -- but we'll take it.

More later. Still a bit loopy from all that tryptophan or whatever it is in turkey that makes you sleepy.

Tuesday, November 23, 2004

No more dances

We knew it when we first saw him, that terrifying and exhilarating day: Will is pretty darn special.

You can't deny his cuteness, but it's more than that. Will seems to touch people in ways his parents are still learning to comprehend. In the past few weeks, friends and strangers have placed Will on prayer lists from Detroit to the Vatican. People we don't know are making quilts. Nurses are stopped in their tracks by his charm. Pretty impressive for a guy who should still be in the womb.

Will has already taught us a lot, and Mo and I think he has much more to teach us. Will has a genetic condition.

We've danced around the issue since he was born, especially on this blog. We can't dance any more. Beaumont's chief geneticist is fairly certain Will has a condition called Cornelia de Lange Syndrome. There's a slight possibility he may have Noonan's Syndrome.

Neither are good. Both involve retardation and severe shortness. Cornelia de Lange is more devastating. At best, children with the syndrome will speak by the time they are five or six and be mildly retarded. They'll grow to four or five feet tall and have normal life expectancies. The worst? Severe hearing and vision problems, autistic-like tendencies followed by an early death. The long-term prognosis is better for Noonan's Syndrome.

There is a blood test to determine whether Will has either syndrome, but it's inconclusive. At best, it would confirm the existence of a syndrome. A negative result would not alter his diagnosis. That's not because Will is healthy. It's because the test is very limited.

Unfortunately, Will's diagnosis doesn't explain his current problems. Instead, it complicates them. Will is nearly term and still on the ventilator. That's not the fault of either syndrome. What's more, the ventilator is a vicious cycle: The longer you're on it, the more damage it does to the lungs, the more damaged the lungs, the more you need the ventilator.

We struggled mightily about whether to post this news on the Internet. We began the blog to keep close friends and family in the loop about Will's progress and to avoid having the same conversation 15 times a day. The blog has grown into something more than that. We're happy for it, but hesitant as well.

A parent's first instinct is to protect their child. We hate the thought of anyone judging, ridiculing or pitying Will. Mo has already become a pitbull for Will. My pity extends to anyone who utters the wrong word about him in her presence.

We thought about starting an alternate blog to post the real news, the stuff prying eyes and friends of friends couldn't see. While tempting, the idea is unseemly. It suggests we're somehow ashamed of our son. Nothing could be further from the truth.

As journalists, Mo and I tend to err on the side of commission rather than omission. For too long, problems like Will's simply weren't talked about. If they were, hushed tones were involved. Thirty years ago, Will would have been sent off to a state institution.

We're not going to become part of that legacy. This stuff happens. It happens to people whose parents are college professors and people who thought their children would become senators. It happens to people -- like me -- who have spent a lifetime avoiding people with disabilities because he was afraid of them. It happens to people like his mother, who's involved in the cystic fibrosis community.

It's lightning in a bottle, a chance gene that went astray through no fault of us, our parents or grandparents.

Every baby changes parents' lives. Every parent loves their child in ways that surprise them. We love Will more. His diagnosis makes us love him more. He's overcome longer odds in his 39 days than I have in my entire life.

We cherish the great moments, the times his eyes widen every day at 7:30 p.m. and he wiggles his hips and sucks on his ventilator tube. We're thankful for those times his eyes seem to follow us as we read him poems. We love the puddles of drool he leaves on our stomachs when we hold him.

There are many tears ahead. We've all but been assured by doctors the next two or three months could be the hardest of our lives. The facts are more frightening, the future is murkier, but our job is the same: Love Will more than you think is possible, then love him more. Each and every day.

Sunday, November 21, 2004

Fourth time lucky?



Life is so simple on the ventilator. Will sleeps all day. He wakes up once in a while, listens to stories, drinks milk from a tube every three hours, gets some love from Mom and Dad, then nods back off to dreamland.

It's a cushy life. It's also one that can't last forever.

Doctors and nurses have finally caught on to Will's "I'm Too Cute to Breathe on My Own" routine. Like it or not, he's getting weaned off the ventilator this week. As with much in life, the ventilator is easy and feels good, but bad news in the long run. After a while, infants grow dependent and ventilators can weaken the heart and other organs. Plus, it's impractical. Don't try hailing a cab or navigating a revolving door on a ventilator. It's not fun.

So it's back to the C-PAP (the nose tubes) sometime this week. Since scaring the bejesus out of us last weekend, Will has been a joy this week. His levels are stable. He's up to 3 pounds, 4 ounces and hasn't spit up any fluids or turned blue.

Will has failed to make the transition to the C-PAP from the ventilator three times. We hope the fourth time is lucky. Not to sound dramatic, but it's become a major concern. While going back and forth isn't altogether uncommon for preemies, Will is nearly full-term.

Other tidbits: Will has an EEG scheduled for a few hours Monday to test his brain to see if he's prone to seizures. They're not expecting to fing anything abnormal, but the test is a precaution after he stopped breathing last weekend. One of these days, doctors also are going to send his blood to Washington for expensive chromosomal analysis. They're testing for some scary syndromes, so our fingers are crossed and thoughts positive.

This is a big week for the little guy. He needs a break. His parents need a break. It'd be great to stop worrying about Will for a minute or two and focus on our normal fears this time of year: Finding a scrap to eat after Maureen's father, the Big Beef, weaves through the Thanksgiving buffet.

Friday, November 19, 2004

Tiny titan

He may have a genetic condition and still can't breathe on his own, but one thing is becoming clear: Our kid can beat up all the other preemies in the ICU.

We always knew Will was tough. Heck, we gave him a literal name because we took a hard look at him and knew he wasn't a Henry. We thought he had a strong force of will and hoped he had a will to live, but we're continually surprised at how much power is concentrated in a 3 lb, 3 oz. package.

And not just metaphoric, "Oooh, he has such a hold on our heart," power either. Will's a little Schwarzenegger. When he's mad, he extends his arms and legs onto the bed and does push-ups. He kicks like a pack mule and can practically hurl himself out of his nest. Tonight, he lifted his head in rage for about 20 minutes. He's getting so good at yanking his ventilator tubes that nurses are threatening to cover his hands with socks and cotton balls to prevent him from escaping.

They're encouraging signs, and give us hope Will will make it off the ventilator. They also reinforce that we aren't in control of any of this, and sometimes, that's OK.

Like a lot of expectant fathers, I spent a lot of time during the pregnancy planning my son's life. He'd be bookish, funny, athletic, conscientious, and a progressive son of the world. He'd read smart kid magazines like Cricket and World, learn Greek mythology, regularly travel to Detroit to learn there's more to life than our lily-white suburb and be too busy collecting bugs, playing soccer and baseball to care about the UM-MSU rivarly (our kid was going to Brown anyway.)

That's what I wanted. Will was born with what he needs: A powerful spirit and brute strength to endure this horrible hospital stuff.

That's the last thing I would have expected a few months ago. Now, it seems like more than enough.

Thursday, November 18, 2004

Evil eyes and shaved pigs

As excuses go for failing to update the blog more often, this one is a doozy: I've been off with a serial killer.

Strange, but true. The trial of Michigan momma's boy Coral Eugene Watts, the so-called Sunday Morning Slasher, began 10 days ago and ended yesterday with the conviction of the man who's confessed to killing at least 13 women.

Talk about your crazy contrasts. All day, I'd sit and listen about how this wacko stabbed, choked, drowned and hung women because he thought they had "evil eyes," then I'd rush to the hospital, stroke Will's lustrous red hair and coo "Barber, Barber Shave a Pig" and other nursery rhymes. The routine kept me from home from 7 to about 9 every day.

I'd known a lot of Watts' victims relatives from covering the story for a few years, but hanging out with them reinforced not only their strength but sometimes how the smallest things can be the most emotional. Watts killed their daughters 20 years ago. Most have talked about the deaths for so long they can do so without crying. By this point, it's almost rote. The tears would come when they ventured "off-script," and started thinking about stolen moments in lives lost. Things you wouldn't expect, like lost notebooks or missed birthdays, were the most emotional.

I'd never suggest I know how they feel, because that's foolish. But Mo and I have become very good at being matter-of-fact about Will: He's born small, he's not like other preemies, and in all likelihood, he has a genetic condition that could make his life harder.

For weeks, we hoped and prayed that he wouldn't be retarded. No one wants to acknowledge it, but a social shame really does remain. Now, whatever happens, we'll deal with it. If he is, we'll just have to love him more. Our worries are for Will. First, we want him to breathe on his own, then gain some weight, then be healthy. And that's really it. We want our child to one day be healthy enough to breathe without a machine and eat without a feeding tube.

Happiness, we're not worried about. We'll force it on him whether he likes it or not.

There are hard moments. Some are obvious, like bad weekends or his "episodes." Others are less so, like sappy car commercials involving fathers and sons or even seeing healthy children. My new joke is that all children over 5 pounds are grotesque giants. I'm sure as time passes, the hard moments will grow farther apart.

But enough rambling. I'm sure Maureen will have a field day making fun of this post and its pomposity, but what good is a blog if it's not self-indulgent?

Will is hanging out and doing fine on the ventilator. We had a really nice time with him last night. It's so great to see his huge eyes and watch him wiggle around. It makes you appreciate him so much more.

The latest word is they'll keep him on the ventilator through the weekend, then try the C-PAP again on Monday. They also are going to draw some blood and send it to Washington, D.C., for some high-tech tests in hopes of pinpointing his syndrome.

I always knew my baby would make a splash in Washington someday.

Monday, November 15, 2004

3 pounds o' poems


Finally. The poetry slam has been enjoined. After many subtle hints about Will's love of nursery rhymes and Shel Silverstein, someone unrelated to him has met the challenge and put pen to verse.

Our pal Charlie "Chuckles" Wollborg has graciously written a poem for our little fellah. It was intended as a lyrical encouragement to crack the 3-pound barrier. Now, that Will is officially 3 pounds, 1 oz., it's more of a nostalgic ode to those long-ago days of early November.

We like it a lot. It's a welcome addition to "Hillbilly Lawyer" and "Will Loves Dill," whose links are provided below.

The race to 3 pounds
It's the strangest thing you'd ever believe
If you've known a pair like these
A man and a woman who both loved food
And anything smothered in cheese
They'd run and they'd sweat
And swing and they'd cuss
And still gain weight with ease
So they'd diet and try it without a side of ranch
Or eat anything that they'd please
So wouldn't you know it their first is born
Just as the Sox beat the Yank-ees
A tiny li'l boy with the heart of a lion
And a Will of a Bengalese
He stepped out of the womb/Just a bit too soon
And would need a little expertise
To pack on a pound, get his feet on the ground
And breathe without a wheeze
It's funny to think how little things
Change the way we always believe
Where once we tried the freshmen 15 to hide,
We now look forward to the "threes"
And now we wait each day to read their blog of journalese
To see if our favorite 2 pound-15 ouncer
Has finally decided to appease

Thanks again, Wollborg. As always, more poems are welcome. Will is a Libra after all. And you know Libras are sensitive souls.

http://illustratoranswers.com/willhenry

http://illustratoranswers.com/willhenry/beths-poem.gif

Sunday, November 14, 2004

Try try again



Remember all that stuff about tracheotomies, severe retardation, swallowing reflexes and do-not recussitate orders?

Well, forget it. Never happened. Onward and upward. Keep on keeping on.

That's today's dizzying message from the Neonatal Intensive Care Unit at Beaumont Hospital. Confusing as it is, we'll take it.

Confirming once again that you shouldn't trust what happens on weekends at hospitals, we met today with Beaumont's chief of neonatalogy. His basic message: Will is doing better than two weeks ago, suffered a setback but is slowly moving in the right direction. There's no more reason than ever to think he's retarded, lacks a swallowing reflex or will ever need a tracheotomy. That's not to say any of those things won't ever happen, just that nothing that's occurred lately makes them more likely in the future.

They're still not sure why Will stopped breathing, but it's possible supplements mixed in with mother's milk may have caused him to spit up mucus and other stuff. Speculation that Will lacks a swallowing reflex is grossly premature. It's clear Will is able to swallow somewhat. He lasted a week on the C-PAP before having any trouble. The problem is he seems to do great for a while, then hit a wall and go bad in a hurry.

The plan, such as it is, is to give Will a break for about a week on the ventilator, then try again. That's about all they can do. The equipment may be better and the medicine is certainly more expensive, but in the end, so much of this stuff boils down to trial and error and try, try again.

It's been a crazy few days. We've learned it's probably not a good idea to ask too many questions to rounding physicians who aren't intimately familiar with Will's history.

But today, we needed a break and got one. Will had a great day. He was wide-eyed and alert for the first time in a few days. The only shame is that Will's grandmother flew in from Maine, then left before the rebound. I held him for about an hour, read Shel Silverstein poems and debated with Will the comparative merits of peanut-butter cookies vs. chocolate chips.

The answer, of course: Peanut butter. Hands down.

Auto-pilot

Maybe it's my limitations as a writer. Maybe the problem is with the material. Either way, it's getting harder to find new ways to write that Will isn't doing well, but he's our son, he makes us proud and we love him.

Will had two of what nurses are now calling "his episodes" yesterday. Both involved spitting up blood, mucus and breast milk. Both, thankfully, happened during our brief breaks from the hospital. He's now back on the ventilator (life support), which is oddly distressing and comforting at the same time.

We're happy he made it a record 10 days on the C-PAP, but we're sad he's in some ways back to square one. We're relieved we don't have to watch him suffer and maybe can see him open his eyes today, but we're upset the future seems so murky.

Mostly, though, we're numb. We're hoping today is event-free because we don't know if we can handle more bad news. We're tired of doctors going out of their way to tell us Will won't ever be normal, when all we're asking is about his care for the next few hours. We don't want to hear another well-intentioned, but unsolicited, lecture about how someone's neighbor's cousin was born premature and now is 6'10", plays for the Pittsburgh Steelers and is such an Adonis he sells his sperm for a living.

We're both pooped and coping in different ways. Mo cries a lot, and lays around watching MTV and reading People magazine and other trash (OK, that may be normal.) Joel rages at Beaumont Hospital and eats everything in sight (also probably normal.) Mostly, though, we're getting by with hugs and love and trying to get through another day.

So, we know it's not very creative or new or interesting, but Will is our son, we love him and we're proud of him. And oh yeah: As of yesterday, he's officially -- and finally -- the 3-pound son who makes us so proud.

Saturday, November 13, 2004

A bad day

Sometimes, in our efforts to be world-class bloggers, we get a bit ahead of ourselves.

Will didn't eat cake and ice cream to celebrate his four-week birthday. He had one of his worst days yet.

For the third consecutive day, Will stopped breathing as Maureen held him. Unlike the first two days when it passed in an instant, this time was bad. It happened so quickly. First, his lips turned a slight gray, then his face turned blue, then the next instant his whole body was the color of a deep bruise. Alarms sounded, nurses ran from different pods. Blood came from his throat, white foam shot from his nose. It was as traumatic as it sounds.

For the past month, doctors have told us to remain optimistic and promised to tell us when to start worrying. They are very worried.

Will has yet to develop his swallowing reflex. Mucus and other secretions build up in his throat, then block his airway. The reflex should develop by the 32nd week. If it doesn't develop by his due date (Dec. 5), it probably never will. The reflex is housed in the brain stem. Its absence is a sign of severe retardation.

Right now, it's just wait-and-see, hope-and-pray that he learns to swallow in the next three weeks. So far, he's done everything else on his own schedule and emerged from other scares (see: platelets, hole in the heart.) He loves his pacifier, so we're not sure why he can suck, but not swallow. He's made us proud at every turn, and -- we know we're biased -- but Will just doesn't look retarded to us. Photos don't do him justice. He looks like a model.

We're obviously freaked out. We feel terrible for Will. Like any other parents, all we wanted was his happiness and health. It just seems so wantonly cruel.

There are solutions for the inability to swallow, but they're a bit down the road. One is a tracheotomy. That would keep him from choking, but it's permanent and may confine him to a liquid diet for life.

As with everything else, there's still so much we don't know. Obviously, if there's a problem as rudimentary as swallowing, there are other fears. We didn't get a chance to ask the doctors, but you can imagine some of our questions.

This is all heady, frightening stuff. There's been a lot of tears, but today we'll pull ourselves together, head to the hospital, read him nursery rhymes and tell him we love him. The facts may vary. The future is frightening as hell for us and him, but underneath it all nothing has really changed. He's our son. We're glad he's here and we love him like crazy.

Friday, November 12, 2004

Weekly celebrations

Everybody likes Fridays. We like them a bit better. Every Friday since Will popped into the world, we've snuck goofy hats into the ICU and serenaded him with "Happy Birthday." I'm sure we'll tire of the weekly tradition by his fifth or sixth birthday, but for now, it just seems right.

Today's a biggie. It's Will's fourth Friday. That seems like a major milestone, so no ordinary Hulk or Spongebob birthday hats will do. His grandmother from Maine is in town for the occasion, which may necessitate sneaking streamers or cake past the nurses.

He's made some great strides, and most days, it doesn't seem like a month. We get so preoccupied with carbon-dioxide levels, the race to 3 pounds, and oxygen counts that we sometimes forget how far he's come in so short a time. Of course, there's little time for reflection. We barely even have time these days to do our own laundry (thanks Grandma Clem!) clean (thanks again!) or cook (send casseroles).

We still dont know why Will is so small or what that means for the future. Doctors have yet to even broach the subject of when he may come home. We still wince when we see phrases on medical charts such as "dysmorphic premature male," as we did yesterday to our chagrin.

Now, though, when we say we'll deal with whatever it is and love the hell out of him, we can do so with more conviction. That's been our mantra from the start, but with each day, it becomes easier and we're able to be even more certain of it.

So get ready to party like a 2-year-old tonight, Will. We love you. Keep living up to that proud name of yours.

Thursday, November 11, 2004

Kissy kissy time



Seven days after making the leap for the third time from the ventilator to the CPAP, our little guy is slowly taking one more step forward: He's testing his wings on a nasal canula.

The doctors have decided to let Will go off the CPAP (the breathing device with big tubes and prongs that wedge into Will's nose) for two hours a day to see how he does on the canula. A canula is a little tube that plugs into the nose and supplies supplemental oxygen (or the tube old guys wear in casinos, as Joel describes it). It's a step down from the CPAP and the last help preemies are usually given before they fully breathe on their own.

I held Will for the first time Wednesday while he was on the nasal canula and he did great. His levels remained steady and he sucked away the entire time on his pacifier. As happy as Will was to lay in my arms and sleep, I was thrilled because I could actually touch his face and kiss his cheeks and head without worrying about dislodging CPAP tubes or wiring.

The plan is to gradually increase the amount of time Will spends on the canula and off the CPAP until he's entirely on the canula. Joel and I don't want to rush him though because if he's pushed too quickly he could backslide and that's the last thing we want. As Joel and I keep telling ourselves, one day at a time!

Tuesday, November 09, 2004

Lesson-less update

Maureen's running joke lately is that I can't write anything about Will that doesn't include some lofty lesson or begin "Life in the ICU is funny ..."

What the heck. Today is Maureen's birthday. I'll try to resist the temptation.

Will is doing good. The weekend wasn't the greatest, but Will is making good progress. He remains on the C-PAP and is breathing well. His carbon-dioxide levels are good, and there's some talk about putting him on a nasal canula (sp?) by week's end. That's the little strip of oxygen underneath the nose that old men wear at casinos.

His weight is a slight concern. He flirted with 3 pounds -- coming within 26 grams -- but has since dropped to 2 pounds, 12 ounces. That's where he was a week ago when he started receiving mother's milk. Doctors think he may be burning calories by working harder on the C-PAP, which requires his lungs to work, than on the ventilator, which goes directly into his lungs.
They've started putting fortifiers into the milk and may add sodium to fatten the little guy up.

That's about it. I'm sure there's some great lessons from the past few days that I'm missing. Perhaps something about the power of hope? Maybe Will can teach us something about the fallacy of America's obsession with weight? Isn't there some funny anecdote about Starbucks, the Red Sox and surly nurses that I can include?

Ahh. The heck with it. Happy birthday, Maureen. I love you. Will loves you. You're a great woman, a great wife, and a terrific mother.

Saturday, November 06, 2004

Lessons of the ICU




You learn a lot very quickly in the neonatal ICU. Most of it, you wish you never knew.

Some isn't so terrible, like lessons from high-school biology about chromosomes and the transformation of oxygen into carbon dioxide. Most of what you learn flat-out stinks, like how much mucus can build up in your son's throat before he can't breathe.

Today, we learned what happens in hospitals when babies die.

It's as bad as you'd expect. Will's neighbor, who was born Thursday at 1 pound, 10 ounces, was pulled off the ventilator this afternoon. Her mother wailed, then cradled her daughter for about an hour. Nurses took photos of the two of them together. When the mother was wheeled away, the nurses dressed the baby up in nice clothes and took more photos before pulling the curtain to the room.

It may be the saddest thing we've seen at Beaumont. Making it somehow sadder was that the scene didn't seem unordinary. Nurses followed protocol and kept quiet. Doctors hovered a few yards from the family. Walking by in a hurry, you'd be hard-pressed to know anything was amiss.

They'd all done this many times. They were good at it.

Will hadn't had a great night. There was some fear he'd have to return to the ventilator for the third time, but he rebounded well today. We like to take some credit, having spent the better part of eight hours holding his hand and ordering his carbon-dioxide levels to fall to safer levels.

It was tough to take our eyes off the nurses making the bed around Will's neighbor. We did so long enough to kiss Will on the knee, wish him a happy 22 days on Earth and tell him to keep making us proud.

As difficult as it was to watch, it's something to remember the next time we feel like bellyaching.

Friday, November 05, 2004

Cigars and sunsets

Funny thing about having a child in ICU: You see signs everywhere. Not much really changes, day to day, so your mind wanders. All of a sudden, you're finding metaphors in rainbows, stolen cars and macaroni and cheese.

The Red Sox win it all... Will's gonna do great! ... Joel's car is stolen ... We're cursed! ... Look, a pretty sunset... Everything's going to be just fine!

So it was yesterday that Mo and Joel found themselves with clenched teeth, trading insults while Will huffed and puffed on the C-PAP, hopefully oblivious to his parents' spectacle.

We know it's ridiculous, but we've clung to a fantastic Polaroid that a nurse took of Will the other day. He looked huge. His bright eyes beamed. His red hair looked vivacious. We've taken 100 digital pictures of him and none compares.

Mo cherished the photo. She took it everywhere. It was one of the few tangible reminders of her son she could take from the hospital. Joel lost it in three days.

Long story, but it slipped behind a crack in a dry erase board in his room. We tried everything to extricate that sucker, but to no avail. Mo was crushed and used colorful language to describe her disappointment. Joel drove to Detroit that night to fetch from his desk another Polaroid taken by the same nurse.

It was almost as good, but not the same thing. It was hard not to view the loss as a bad omen.

Well, sometimes a cigar is just a cigar.

Despite losing the photo, Will isn't falling through the cracks. Quite the opposite. Since going on the C-PAP on Wednesday, he's done great. His breathing isn't labored. His carbon dioxide levels are great. He's producing platelets (that blood stuff that allows blood to clot) like a workhorse. And he's within striking distance of 3 pounds, weighing in this morning at 1335, just a hair shy of 1361.

We know things could still go south in a hurry and he may have to return to the ventilator, but
we're already so proud of him. It's corny, but his example makes us want to be better parents and better people ... even if we still occasionally call each other "klutzes" or "nasty lady."

One final note: We haven't posted any photos in a while because we've had some network problems. Hopefully, we'll soon find a remedy.

Wednesday, November 03, 2004

Everything stinks

We're all a bit cranky this morning.

Bush is still president. We didn't get any sleep. The cats kept us awake all night and, compounding our misery, Joel's car was stolen Tuesday night, swiped from the street right under the vigilant eye of Detroit News security.

As bad as all that stuff is -- and it's all crummy -- Will's day could may soon get worse.

Despite our pleas and an earlier plan to plump him up, Will is going to return to the C-PAP at 1 p.m. today. Those are the oxygen tubes that snake through his nose toward his sinus cavity. Preemies hate 'em. Will has been on it twice and gone off it twice. Both times he lasted a day or two.

The C-PAP is a necesary step toward breathing on his own, and in some ways its a sign of progress. His ventilator settings are now so low that it's practically pumping the same air we all breathe into his lungs, rather than oxygen-rich stuff.

But we fear he's being rushed onto the C-PAP and will unncessarily suffer before returning to the ventilator. That seemed to be his pattern before. We just don't want our little guy to suffer. It was so hard before seeing his tiny lungs labor up and down as he gasped for air on the C-PAP, and it's such a traumatic experience to have those tubes shoved up your nose.

We're trying to stay optimistic, but we'd be happier if they gave him a few more days of free and easy breathing on the ventilator. He's been so cute lately, so alert and seemingly happy, and we dread upsetting him because of a capricious decision.

Hope has gotten us this far, though, so I suppose that's all we can do. Given his track record lately, though, we wouldn't recommend standing too close to Joel.

Monday, November 01, 2004

A peck of pickled poems

This nursery rhyme thing may be catching on.

My sister, Beth, wrote a lovely ode for young Will, which brother Steve graciously illustrated.

What a wonderful gift. We like it a lot and hope you do too.

http://www.illustratoranswers.com/willhenry/beths-poem.gif


Lots of cheeseburgers

Progress doesn't always come quickly in Neonatal Intensive Care, so we've learned to celebrate our milestones wherever they come.

For a while, we monitored carbon dioxide, oxygen levels and platelet counts with the vigilance of Wall Street traders eying ticker tape. That stuff is yesterday's news. The new obsession: The race to 1361 grams.

That's 3 pounds for the metric averse, and Will is on his way. He was born at 1083 grams, or about 2 lbs, 6 oz. A week of mother's milk and slight variables -- reduced swelling, the removal of his IV -- boosted the total to 1225 grams, or about 2 pounds, 11 ounces.

That's a 13 percent gain, or the equivalent of a 180-pound man ballooning to 203 pounds in a few days -- which is easier than it seems when you're deluged with sympathy cookies. Will has hit a small plateau, but we're hoping he can hit 1361 by next Monday.

Granted, we've carried flashlights that weigh more than 3 pounds. But life is all about perspective. Joel prefers to think of Will as weighing more than 11 Quarter Pounders with Cheese, which seems like a lot of food and makes us feel better.

Will had a great weekend. His levels are good. His IV, which caused such trouble earlier, has hopefully been removed for good. Tests also show the hole in his heart has closed, and a follow-up scan of his brain ordered by geneticists looks normal.

Joel held Will twice over the weekend and experienced the joy of skin-to-skin touching. There's really nothing like it. All the worries, anxieties and long-term fears fade quickly and everything suddenly seems like it's going to be OK.

Will seemed to like it too. He left a huge puddle of drool on Joel's chest.