Will Henry Kurth

2005-01-18T12:05:00.000-05:00

We miss you, Will.

Thanks

2005-01-12T15:05:00.000-05:00

Friends:

I launched this crazy Internet dialogue three months ago with a note that began, "life is funny sometimes." It became a stock joke for Maureen, who delighted in mocking my blog entries for being long on lessons, windy prose and allegories and short on vital information about Will.

Three months later, it's still true. Life is funny sometimes. It's also sometimes wonderful, unfair, joyous and tragic. Most of all, we've learned, life is a precious gift.

Today, it's sad. Will Henry Kurth, our beautiful boy and love of our lives, passed on today at 4:20 a.m. at Beaumont Hospital. Despite early hope after last week's surgery, Will quickly regressed. In his final days, Will's pain was so great and breathing so labored that nurses gave him morphine before touching him.

We're heartbroken. Our eyes are swollen from crying. Just when we think we can't sob anymore, more tears come. It seems so cruel that someone so pure and so loved would have to suffer like he did. We feel guilty Will could fill us with such happiness and pride, but our love couldn't ease his pain or help him overcome impossibly long odds.

Like all new parents, we thought Will was a miracle baby after his birth. After 89 days, we know he is. We're amazed and humbled that he's created this network of friends, literally from Washington to Maine, who are bonded only by their love for someone most never met.

It may be a good thing that you never laid eyes on Will. You might not have ever recovered. The kid was a charmer. Nurses from other parts of the vast NICU would make a point to visit Will and gaze at his deep blue eyes, stroke his long strawberry blond hair and ogle his curly eyelashes. A sensitive soul, Will loved music and seemed at peace when he was in our arms. Still, he was undoubtedly a Kurth and Feighan: Cross him at your peril. He'd turn bright red, lock his legs and extend his arms outward like a soccer referee screaming "GOOOOOAL!"

It's funny. Maureen and I were always certain we'd have smart, ugly kids. Will was nothing we ever expected, but so much more than we imagined.

We've always known, deep down, that Will wasn't long for this world. Our inital fear over having a child with disabilities soon gave way to concern for him and hope we could at least take him home. We can accept that it wasn't meant to be, but it still hurts.

We already miss Will a lot, but we're so happy he let us be his parents for three months. He taught us so much. We now know about unconditional love. We have an appreciation for the power, vitality and love of the disabled. We know that a lot of stuff we used to think is important really isn't. We learned about patience and savoring the moment. We learned we have amazing friends and family who have overwhelmed us with their love and generosity. We know how much we love being parents.

Most of all, we think, Will showed us how lucky we are to be alive. So we'll feel rotten for a while, but get back up again and do right by our son by trying to take each day as the great gift it is. That's the least we can do for Will.

So long, pal. We know you're in a better place with people who've always loved you and others who are just now falling under your spell.

Thank you, Will. We miss you.

Note: Visitation is from 4-8 p.m. Saturday at Kaul Funeral Home, 28433 Jefferson, St. Clair Shores. A short service is scheduled for 7 p.m. Saturday at the funeral home.

Surgery update

2005-01-06T10:28:00.000-05:00

As he always does, Will made us proud yesterday.

The brave little dude looked curious and bewildered, but never cried before surgery. It was quite a production. About four nurses and respiratory therapists loaded Will, his leads and tubes, his monitor and ventilator onto a stretcher equipped with four scuba-sized tanks full of oxygen. He was wheeled up and down elevators to another part of the hospital on the longest ride of his life.

Will put up a good front, but couldn't conceal his true feelings: Moments before the long walk, his big eyes widened, he grimaced and puked all over himself for (hopefully) one last time. It was the first of many tears in a long day.

After the maze of hallways, we reached through the holes of his isolette incubator, rubbed his head and told him we loved him. About three hours later, after enduring the agony of waiting and tedium of daytime divorce court shows, the surgeon emerged from the OR.

Will did great. He was a bit groggy, a bit stiff, a bit bloated and more than a little scary looking, but Will was still a sight for sore eyes when we returned to the room.

He was out of it much of yesterday and probably will be today as well. In addition to the probes and lines we've become used to over the past 83 days, the surgery added a few more. In truth, Will looks a bit like a mechanical boy. He has one line coming into his skin above his right nipple to provide long-term IV access. Another, thicker tube goes into his stomach for feedings. It's about five inches long. I'm calling it Will's front tail.

No one is saying the surgery is a panacea. It could take a few days of fine-tuning and fiddling with drugs to get Will completely comfortable. But we hope it can be the beginning of Will's long-awaited turnaround.

Surgery

2005-01-04T20:01:00.001-05:00

Having a sick kid isn't much fun.

The hours stink. Your social life is a memory. Your diet goes to hell. You get so tired that crying seems like too much work. Having normal conversations with normal people about normal things is practically impossible, and the family waiting room in the Neonatal ICU doesn't even have ESPN.

But the worst thing, the absolute worst, is watching someone you love so much suffer and not being able to do a thing about it.

Will has had a terrible go of it the last few weeks. He weathered some goofs and snafus with ease in mid-December and was moving toward emerging off the ventilator. Then he crashed. First, his levels got worse. Then, his breathing seemed more labored. Now, he's spitting up a mucusy goo with alarming regularity.

Lately, Will seems like he's in a lot of pain. Sometimes, he cries so much he seems inconsolable. It's impossible to hear because he has a tube down his throat, but you see it from his tortured eyes and tears. He doesn't sleep as much. We think it's because he spits up so much his bed now needs multiple changes. His oxygen intake is crashing with greater frequency, sounding scary alarms.

Doctors aren't sure what's happening. Technically, Will shouldn't have anything to spit up. He has tubes that go directly into his intestines, so his stomach should be empty. It's a phenomenon one doctor described as "fascinating."

We consider it excruciating. You wish you could trade places with him, breathe for him, do anything other than to sit and watch your innocent, beautiful baby suffer.

Hopefully, help is on the way. After much cajoling (from us) and hestitation (from the docs), Will is scheduled to undergo surgery for about 2 1/2 hours tomorrow at 9:15 a.m.

Surgeons will fix the pyloric stenosis by opening a valve (the pyloris) between the stomach and intestines that may have closed, causing projectile vomiting. They'll also perform a procedure called fundoplication, which closes a valve in the esophagus and makes it impossible to vomit.

While they're there, surgeons will add a feeding tube that goes into his stomach and out his tummy to replace the obnoxious line that now snakes from his nose into his intestines. They'll also run a central line into his heart so they no longer have to poke him 15 times to try to establish an IV.

It's an awful lot for such a little guy. Tomorrow's not going to be much fun. Doctors warn it may not fix much. We still hopeful that the operations can make Will's life easier and maybe -- just maybe -- set him back on a course toward getting off that old nemisis, the ventilator, and breathing on his own.

78 days and counting ...

2005-01-01T22:26:00.000-05:00

There's no denying it: Will is damn cute, and we've been in the Neonatal ICU too long. How long? At this point, Phileas Fogg would almost be home by now from his 'round-the-world in 80 days caper. River otters could get wined and dined, impregnated and have a litter of little river otters. Hiking 10 miles a day, we'd have walked to Boston by now.

You get the point. It's been a while. So without further ado -- and in no particular order -- here's Mo's list of signs you've been in the NeoNatal ICU far too long.

1. You know the scrub colors of each employee in the NICU: blue for nurses; burgandy for respiratory therapists; purple for cleaning staff; and aquamarine for doctors.

2. The screen saver on the computer in your son's room is changed from "The patient is the center of all we do" to "Welcome to Will's Room."

3. The receptionists know you by name and begin phoning your child's room before you can even ask.

4. You've memorized the work schedule for the fat guy who comes every day to vacuum the carpets at 5 pm.

5. Without looking, you can recognize all four alarms in your child's room, from the dull ding-ding of the ventilator to the shrill beep of the temperature probe.

6. You know the quirks of all six neonatologists, and almost all have made you cry.

7. At least four rashes have broken out on your arms because of the required three-minute washes every time you enter the NICU.

8. The decorations on your baby's bedding has gone through four holidays: Halloween, Thanksgiving, Christmas and New Year's. We're eagerly awaiting the sheets with Valentine's hearts.

9. You've gone from being intimidated by all the sensors and monitors to being so adept at them you change the oxygen levels when the nurses aren't watching.

10. There are more books, decorations and old magazines in your son's hospital room than there are in your nursery at home.

Postponed

2004-12-29T14:34:00.000-05:00

Our first mistake was taking a doctor at his word about the timing of surgery. Our second was posting the misinformation online.

As we've learned time and again the past 10 weeks, few things go as they should in the NICU. There's real time, then hospital time, then NICU time, then NICU time around the holidays.

Will's pyloric stenosis surgery wasn't this week. It may be next week. It may not be. There's some new talk about trying to wean him off the ventilator again before surgery. Sorry to get everyone's hopes up about a surgery.

He's weathered well, by the way, a series of snafus and mechanical malfunctions that would have waylaid a weaker kid. Will continually requires less support and has us beginning to hope he may be able to get off the ventilator without a tracheostomy. He's a strong little boy.

Miracle at Home Depot

2004-12-25T11:18:00.000-05:00

Try all you like. You'll be hard-pressed to find the tiniest metaphor in this Christmas story.

This is Mo and my fifth Christmas together. It seems like an eternity since our first, when, in lieu of a tree, I blew up 100 red and black balloons and proclaimed the start of a new Christmas tradition. That went over as you'd expect.

Since then, a few traditions have taken root. Some people look forward to trudging through the snow to find the finest fir. We look forward to driving to Home Depot, saying "that'll do," and tossing one atop the car. Then, we burn our thumbs with glue guns making ornaments, decorate the house and play Run-DMC's "Christmas in Hollis" at least 30 times. Usually, Maureen drinks a bottle of champagne, eats a box of Cheez Itz and awakes Christmas morning hung over.

We didn't say it was pretty. We said they were traditions.

This Christmas season, we just couldn't get into the spirit. Time is our most precious commodity now. It's hard not to feel any activity -- especially standing in line at Target -- steals time better spent with Will. Neither of us bought many presents. To the chagrin of our neighbors who think no lawn is complete without a life-size sleigh and robot reindeer, our front porch remained dark. Maureen didn't feel like buying a tree if our son couldn't enjoy it. I nodded in sympathy, snickering all the while and hopeful we were starting a new treeless tradition.

Christmas Eve, as fate would have it, found us at Home Depot. We were buying Maureen's big present, a mailbox, when we wandered over to the trees. Maybe we'll just look, we said. Usually, there are hundreds. Yesterday, there were four. We're pretty sure they were all dead or well on their way. Touching any of them hurt our hands. All would make Charlie Brown proud.

The tree cost us a penny. The twine cost us $2. We can't quite make it stand up straight. We didn't want to risk putting up the good ornaments, so our third-stringers are on there. You need gloves to touch it because the needles are so coarse. About 50 needles fall if you breathe near the tree.

It probably won't last long, but this year, making do with the tree no one wanted seems appropriate.

Maureen awoke this Christmas morning uncharacteristically sober. "Christmas in Hollis" was blasting from the stereo as we opened our presents. Now, we're off to the ICU to spend the day with our beautiful boy. We'll share with the nurses some cookies our friends have been so generous to share with us. We'll read Will stories, tell him we love him and dress him in outfits that we'll use to blackmail him in 10 years.

Much has changed. Things aren't perfect, but this Christmas, we have so much to be thankful for.

Pyloric stenosis

2004-12-22T22:38:00.000-05:00

Generally, when the chief of neonatology escorts you into an empty room, nervously taps his feet and repeats, "Just remember, I'm your friend," you know he's not going to be asking about the cafeteria food.

We knew today was coming. It was the reason we've been a bit circumspect lately on the blog.

Today, we were offered the choice of discontinuing life support for Will. We chose life.

Only the timing was a surprise. The decision has been looming for some time. Doctors initially had hoped to delay any serious discussion until after the holidays. All along, we'd thought the choice would be whether to perform a tracheostomy or discontinue support.

As usual, the little guy had other ideas.

For the past several weeks, Will has been spitting up. That alone is a concern because he has a feeding tube that goes directly into his intestines. There shouldn't be anything left in his stomach to regurgitate. Last night, Will began vomiting dark blood, which is indicative of an ulcer or irritation of the stomach lining.

X-rays revealed that Will has pyloric stenosis, which isn't wholly uncommon in newborns or children with Cornelia de Lange. Basically, the valve leading from the stomach to the intestines -- the pyloris -- narrows, making it harder for the stomach to empty. That causes projectile vomiting.

It's corrected by a one-hour surgery that cuts open tissue to widen the hole. Normally, the decision to have surgery is automatic. Nothing with Will is automatic.

Will is a very sick little kid. He's a sick little kid who's been on life support a lot longer than he should be, and who gets sicker the longer he stays on it. And he's a sick little kid who, when he gets off the ventilator, will still face a million challenges.

Doctors extend life. It's what they do, so even broaching the subject of discontinuing life support is a dire sign. Almost no families get the choice. We're the first all year at Beaumont Hospital, which treats more than 800 preemies a year. Will's prognosis is that scary.

We knew the choice was coming and agonized over it. The ventilator is a double-edged sword. It extends life, but also increases chances of cerebral palsy, infections and damage to other organs.

You want to do the right thing for him, but don't know what it is. You wonder if you're selfish by prolonging suffering. You wonder if you're making yourself feel better by making him feel worse. You wonder if you're extending a life of constant pain. You wonder whether giving him more time helps him or helps you.

In the end, though, all we ever had was wonder. And questions. Doctors still can't tell us if Will has a mild or severe form of Cornelia de Lange, whether he'll be able to walk, talk, swallow, hear or eat solid food.

That's an awful lot of variables for such a big decision. Some things are certain. We fall in love with Will more every day. His big eyes and busy arms tell us he's got a lot of fight left. He deserves a chance, and we'll never look back and regret giving him one.

It's really that easy, so when the choice came tonight that we'd dreaded so much, there were few tears or discussions. Do the surgery. Fix the pyloric stenosis. Keep him alive.

So on Monday or Tuesday, Will will have the first of what probably will be many operations. Hopefully, it will fix some of his gastrointestinal problems. It could even improve his respiratory problems and allow us to avoid a tracheostomy altogether. Maybe it won't. We owe it to the little guy who's given us so much to try.

Moments from a Blissfully Quiet Weekend

2004-12-19T19:04:00.000-05:00

2004-12-19T19:02:00.001-05:00

2004-12-19T19:02:00.000-05:00

Back again

2004-12-18T20:26:00.000-05:00

That didn't take long.

Less than a week after vowing to shut down the entire operation, the blogging urge has again struck. Maybe it's because we have great photos we're eager to share. Maybe we're tired of dodging phone calls wondering if everything's alright.

Maybe things aren't always so bad.

Not much is happening lately. Will is still on the ventilator, and the longer he stays on it, the dicier his future becomes. His challenges with Cornelia de Lange Syndrome, unfortunately, are aggravated by breathing problems. Add in his difficulties swallowing, and doctors are becoming increasingly pessimistic.

It stinks, but Will is a joy. Doctors say he may be severely retarded. We see a super model whose big eyes glow when we read him stories about sea horses and sailing the sea in a sieve. Doctors say he may spend his life in a wheelchair. We see a troublemaker who wrestles with his feeding tube and squeezes our fingers tight. Doctors say he flunked his first hearing test. We fight the urge to bring in foghorns to test their tests.

The bad news has leaked out slowly over 64 days. I'm not sure that's by happenstance or design, but it's allowed us to slowly accept the situation. It's been a long time since I saw a car commercial featuring healthy, laughing children and began crying.

That's not to say tears are infrequent, just that sometimes, things that seem like curses can be blessings.

We're not sure we can promise happy endings anymore, but we know our lives are already so much richer for the experience. Nor can we guarantee thrice-weekly blog updates anymore, but we can see how it goes.

Siesta

2004-12-13T09:00:00.000-05:00

There are few better comforts during times of crisis than routine.

Most days, Mo wakes up about 9, pumps a few bottles of milk, watches two reruns of that sappy teenage melodrama “Dawson’s Creek,” then goes to the hospital about noon.

I’m up at a far more responsible hour to check e-mail and Red Sox gossip before work. Usually, I get to the hospital around 7, stay a few hours, then return home to blog.

I love to blog. It’s been a great outlet and catharsis, even though I’ve struggled with how much to disclose and felt compelled to marry hard facts with light humor.

That’s become an increasingly hard balancing act. For that reason, this could be the last entry for a while.

Will is doing OK, but the situation is becoming grim. I don’t know how much longer I can continue to write Oprah-like entries that make everyone feel better after a nourishing cry.

Ah hell. Who am I kidding? I can continue BSing for years. The truth is, Mo and I are uncomfortable sharing our private pains in such a public forum.

When we started the blog, we figured we’d get to take Will home by Christmas. Then, after a few weeks of sour reality, we hoped for Valentine’s Day.

Now, we’d be lucky to have him out of the hospital by Memorial Day.

We tell ourselves that, no matter what happens, we’ve been blessed with extra time with our son. We tell ourselves Will has taught us a million lessons and made us better people.
All are true, but it still hurts like hell.

We’ll get through this. Despite everything, we’re still happy people and, so far, we laugh more every day than we cry.

We’ve learned, too, that we may be unlucky, but we’re not alone. The more people we meet, the more we learn how many people carry tragedies under daily smiles.

There’s the guy from the parking garage whose brother is homeless and HIV-positive. There's a friend whose mother is delusional and the ones in the midst of breakups or divorces. There’s a co-worker whose daughter died after 3 months.

The list goes on. The heartaches may have different causes, but they all sting the same. Somehow, they all muddle through. We will too.

We appreciate all the nice comments, support and love everyone has shared with us. Who knows? The blogging urge could get the best of me yet this week, and we may change our minds.

For now, though, try to keep Will in your hearts, prayers and thoughts even if his progress isn’t scrawled across the Internet daily.

Mighty Will

2004-12-08T21:14:00.000-05:00

We learned it that wonderful, terrible day: Nothing happens quickly in the NeoNatal ICU, and for every forward step, there's a backward one lurking close behind.

Fifty-four days later, it's truer than ever. The good news today: Will's pneumonia seems to have cleared. That's married to some bad news: Will should be doing a lot better for a kid that just kicked pneumonia. He still requires almost as much oxygen from the ventilator as he did when his lungs were coated in goop and gunk.

His reliance on the ventilator is unquestionably Will's biggest issue right now. When he sleeps, which is most of the day, he doesn't take many extra breaths beyond those provided by the ventilator. We thought that was proof of his intelligence: Why do the work if a machine does it for you, right? Wrong, say the doctors determined to foil Will's fun.

We'll know more tomorrow when we have our semi-regular meeting with the chief of the NeoNatal ICU.

We could be depressed or anxious, but honestly, look at that kid and try to feel sorry for yourself. It's impossible. His eyes won't let you. And you should see his new moves. He's already mastered the leg locks, hip wiggles, head turns and becoming so mad that he practically turns purple. Now, Will furrows his brow, takes swipes at ventilator tubes, farts when he's nervous and sleeps with his hands to his ears, like a New York disk jockey.

That's our Mighty Will, the 4-pound, 2-ounce wonder of the world.

Speaking of which, if anyone out there knows how to post Quicktime videos online, let us know. We've got some doozies.

Life, the unedited version

2004-12-05T21:30:00.000-05:00

I admit it. I'm a "TLC" addict.

For those of you in the non-cable world, TLC is The Learning Channel. And I've watched everything on TLC -- "Trading Spaces," "Clean Sweep," "A Makeover Story," and "What Not to Wear." Let's just say I've watched so many shows on TLC that I not only know all the designers on "Trading Spaces" but I've even had dreams in which my family members are part of the cast. Pathetic, I know.

During my pregnancy, there was one show on TLC that topped all the others, one I never missed -- "A Baby Story." Every morning at 9 a.m., TLC would follow an expecting couple and videotape their birth experience from right before their child's arrival until right after the baby came home. Some segments involved couples who had had struggles in their lives -- either infertility or premature babies in earlier pregnancies -- but most featured perfectly fine couples who would have perfectly fine babies and come home to their perfectly fine lives. Each segment always followed the same pattern -- a couple is introduced, they talk about how they met, they have a party of some sort before their baby is born, the baby is born without complications, and the couple is interviewed at the end with their new baby.

I learned a lot from "A Baby Story." I learned what drugs doctors use to induce birth (Pitocin), how often women ask for epidurals (a lot) and what a water birth is like. As my pregnancy progressed, I envisioned what my labor would be like, how I'd likely yell at Joel through all of it, and how happy I would be to hear my baby's cry for the first time in the delivery room.

In the end, nothing turned out as I envisioned. There was no labor, no water breaking, no screaming at Joel through the contractions. I didn't even hear Will's cry in the delivery room (I've since learned that babies with Cornelia de Lange syndrome have a very low cry so it's possible he was crying in the delivery room but I just couldn't hear him.)

But even if things didn't turn out as I planned, I still have a beautiful son. And I've learned that life isn't like TV shows. Life can't be edited so only the happy moments show. Life is what it is and all you can do is muddle through and try to make the most of it.

And today, my original due date, I did just that. I held Will for about three hours and looked into his beautiful blue eyes while he sucked on his binky and sang him "The Rainbow Connection." And I realized that even if things don't always happen as we plan, sometimes the happen they way they're supposed to. And for me, that's enough.

Inspired sloth

2004-12-03T11:46:00.000-05:00

As we’ve mentioned before, you’ll never go hungry for clichés or casseroles when you have a child in the NeoNatal Intensive Care.

We’re blessed with many good friends who’ve become food fairies since Will’s birth. We’ve stopped counting how many times we’ve returned home to find Corning Ware on the front porch. We love it all, and it’s exactly what we need. The last time I cooked dinner, we had pistachios and American cheese.

We’re also aware that no one knows what to say at a time like this, and clichés became clichés for a reason. For a while, it was: “Everything happens for a reason” or “God wouldn’t give you anything you can’t handle” and “Special kids need special parents.”

Increasingly, we hear, “You’re handling this so well.”

That one’s always made us chuckle. We certainly wouldn’t use our behavior as a model for how to handle this stuff. We cry a lot. We bicker. We watch too much reality TV, fight the urge to run far away, and have eaten every brownie in sight since Oct. 15. Short of spending our days curled into fetal balls and sucking our thumbs, I’m unsure how we’d have to act for people to whisper, “Y’know, they’re just not handling things well at all.”

Mo and I were talking about it last night. Sometimes, we fear our matter-of-fact approach toward discussing Will could be misconstrued as callousness. As usual, I launched into some lofty psychological talk that didn’t make much sense. As usual, Mo cut through the bull and found the right words.

“It’s easy! That’s all it is,” she said. “It’s easier to be matter-of-fact and accept things. I don’t have the energy to worry all the time, be frustrated and cry every day. It takes too much out of you.”

Mo, my beautiful, wise wife, you nailed it: Our laziness has finally become a virtue. The same urges that leave our pantry peppered with potato chip crumbs and living room covered with newspapers and magazines have better prepared us to handle Will’s ups and downs.

We still cry. His setbacks still break our hearts. We still get angry at nurses when they don’t seem to know what they’re doing. Day-in, day-out, however, it’s easier to go with the flow than chew your nails into stubs.

Today, we feel like going to town on our fingernails. Will had another small setback. He was doing fairly well with the antibiotics. He had more trouble breathing today, though, so they cranked back up his ventilator settings. Will also weighed in this morning at 4 pounds, 2 ounces, which would be cause for celebration if he didn't look so swollen.

Some good news: Recent tests have shown that, unlike a lot of preemies, he doesn’t seem to have damage to his eyes. Also, his brain activity seems normal, so seizures aren’t a concern.

Oh, one other thing. Like a lot of other people these days, Will now has his personal trainer. An occupational therapist is coming in now once or twice a week to stimulate his arms and senses. It’s fairly common for babies who lie around all day and are too young to watch “The Apprentice.”

Patience

2004-12-02T07:54:00.000-05:00

Quick question: Who has more hair, Will or his father?

OK. Don't answer. Who's cuter?

Phooey. There's no use denying it: Will is 3 pounds, 12 ounces of pure beefcake.

Not much to report these days. Will still has pneumonia and several wires and sensors connected to him (this photo is pre-IV and nasal feeding tube.) He's doing OK. It's going to take a week or more to clear his lungs of the gunk that got in there. Already, his breathing seems a bit less labored and his levels are getting back to normal. They were in outer space over the weekend.

We're hoping for a quiet week. Will could use a bit of a break, and emotions could run high this weekend. Sunday is Maureen's due date. That's normally the time parents bring their children home. Will isn't much closer to leaving the hospital than he was seven weeks ago.

We knew this would be a long process. I guess we didn't know how long. We first hoped to have him home by Christmas. Now, our goal is Valentine's Day. We just want him home. Will's always moved on his own schedule, though, so patience is key. It's not easy, but it's worth it.

Get to work, samurai

2004-11-29T22:56:00.000-05:00

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.

Weekend worriers

2004-11-27T21:46:00.000-05:00

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.

Thanksgiving

2004-11-25T23:45:00.000-05:00

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.

No more dances

2004-11-23T22:11:00.000-05:00

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.

Fourth time lucky?

2004-11-21T20:42:00.000-05:00

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.

Tiny titan

2004-11-19T23:35:00.000-05:00

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.

Evil eyes and shaved pigs

2004-11-18T07:34:00.000-05:00

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.

3 pounds o' poems

2004-11-15T21:06:00.000-05:00

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

Try try again

2004-11-14T18:54:00.000-05:00

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

2004-11-14T10:22:00.002-05:00

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.

A bad day

2004-11-13T08:55:00.000-05:00

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.

Weekly celebrations

2004-11-12T09:26:00.000-05:00

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.

Kissy kissy time

2004-11-11T20:26:00.000-05:00

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!

Lesson-less update

2004-11-09T07:38:00.000-05:00

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.

Lessons of the ICU

2004-11-06T20:06:00.000-05:00

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.

Cigars and sunsets

2004-11-05T08:32:00.000-05:00

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.

Everything stinks

2004-11-03T11:45:00.000-05:00

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.

A peck of pickled poems

2004-11-01T20:00:00.000-05:00

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

2004-11-01T13:22:00.000-05:00

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.

Mommy & Me Time

2004-10-30T10:20:00.000-04:00

I'm still getting the hang of this whole motherhood thing and I'm sure it's going to take a long, long time but I've already learned one thing for certain: Nothing compares to holding your baby.

On Thursday, I got to hold Will "skin to skin" as they call it in preemie circles. Apparently, research shows that holding a premature baby directly to your chest helps him breathe better and lowers his heart rate. And get this: a mom's breasts also help regulate the baby's body temperature so he's not too hot or too cold. Aside from producing milk (which the nurses call "white gold" for preemies), who knew breasts were so powerful?

Will and I spent a good hour just cuddling together on Thursday. It was the first time I got to rest my hand against his back and rub my chin against his tiny, fuzzy head for any significant period of time. And it was incredible. I sang him songs (Madonna circa 1980s and songs from my sixth grade choir classes. Sorry, Will) and told him about how one day we'd carve pumpkins together, blow bubbles, and eat tacos. He snoozed the entire time (and tooted once) and I almost drifted off with him. It was amazing.

Baby's Got Back

2004-10-29T19:49:00.000-04:00

Among his many attributes, Will has a fine tush. Normally, we hate it when parents yammer on and on about their children's behinds. It seems a tad unseemly.

But it's tough with our little supermodel. Seriously: Just look at that butt and tell us you don't want to wax poetic or compose a symphony in its honor.

Will had a good day today. His mother will update the blog later about their special afternoon.

One step back

2004-10-28T19:01:00.000-04:00

We knew there'd be days like this.

After all the excitement of the Red Sox victory, Will had a crummy day Thursday. He's back on the ventilator, where he'll remain for a week or two.

He'd done well during his day and a half on the C-PAP (the tubes in his nose), but eventually he had to work too hard and gave up. The doctors think the issue isn't necessarily his lungs, but secretions that build up in his throat and block air flow.

It's the second time in a week Will has gone off the ventilator, onto the C-PAP and back again. It's a not uncommon cycle among preemies, but still a slight cause for concern.

While disappointing, the episode conforms to the two-steps forward, one back pattern we're learning so well. Yesterday afternoon, Will looked great. He had some color (unlike his parents.) He was breathing easy. He'd gained a few ounces (also like his parents), and we caught ourselves daydreaming about a time he could come home.

When we returned that night in our fruitless quest to hear the Sox final out, Will seemed to labor a bit more. By the time we saw him early Thursday afternoon, he was practically translucent (like his Dad) and clearly uncomfortable.

Nobody wants to walk into their son's room and see a gaggle of nurses and doctors adjusting tubes and trying to appear calm while they're scurrying around a portable X-Ray machine, but this is probably the best for Will now.

It's still OK to daydream. The new plan is to try to plump him up with increased feedings and hope the third time's a charm. There's not much else we can do.

Other news on the little guy front: His platelet count, which was such an issue last week, is increasing on its own and doctors think it may have worked itself out. His skeleton X-rays show no abnormalities, other tests have come back fine, and Dr. Batton's hunch is we probably won't know for a few years what -- if anything -- is wrong with him.

For that, we're happy. Except for his breathing, things seem to still be pointing in the right direction, however fuzzily it may appear sometime.

We knew this would be a long process with lots of detours and setbacks, and we knew patience would be tantamount. But it's true what they say. No matter how much you try, no one can really prepare for any of this stuff.

If you can, keep the tiny dude in your hearts today.

Semi-Sweet Victory

2004-10-28T03:22:00.000-04:00

As she so often does, Maureen said it best: "I feel like we're in one of those bank robbery movies when everything goes wrong."

Like those caper flicks, we'd thought of everything.

We received clearance from Beaumont doctors to bring in a radio so Will could hear the final out of the Sox's World Series victory, something Joel has waited 34 years to hear. We left St. Clair Shores in the fifth inning and arrived at Beaumont by the seventh. We had a fancy bottle of champagne hidden in our backpack. We had fresh batteries for the radio.

We had everything, except a radio signal.

We watched a few innings in the family waiting room. Not smart. By 10:30 p.m., the tears in hospital waiting rooms aren't usually for millionaires trying to reverse a make-believe curse.

By 11, we were in Will's room with the radio. By 11:10, we realized we'd be lucky to pick up a weather signal, much less a baseball game. By 11:15, we were trying to find a security guard to buzz us out of the NeoNatal Intensive Care to watch the final inning of the World Series. By 11:30, we were back in the waiting room. We'd missed the entire inning, and walked in just as the Sox were celebrating.

We settled for a whispered kiss and message to Will that we were together when miracles happened, faith perservered and long-shots became sure things.

We know the folly of pinning life-and-death hopes to entertaining distractions, but we're happy that we can tell Will in 10 years or so we were together when the Sox won the World Series, even if -- like so much in life -- things hardly worked out as planned.

And lately, we've felt so much better about making long-range plans.

Will is doing well. He's up to 2 pounds, 12 ounces, back on the C-PAP breathing tube through his nose, and seems to have really taken to his feedings. A full skeletal X-ray this week revealed no abnormalities.

We pulled into the driveway about 12:10 and popped the champagne by 12:12. Maureen was in rare form.

"I have a son and the Red Sox won the World Series. Who's life am I leading?"

It's almost party time

2004-10-27T03:01:00.000-04:00

Get your sleep now, Will

For Wednesday, we'll be hoot-hoot-hollering it up at the Neo-Natal ICU. You'll sip mother's milk. Your mother and I will uncork champagne that we've saved for a year. The nurses will shush us. Your neighbors will cry. But we won't care. Together, we'll toast your remarkable life and the Sox victory in the World Series.

Maybe this is all making sense now. Maybe you just really wanted to see a Sox victory in your lifetime.

Feeding has commenced

2004-10-26T16:30:00.000-04:00

Good news.

After a surplus of mother's milk banned us from the hospital deep-freeze and forced a frenzied rearranging of frozen dinners and peas in our freezer to accommodate mini bottles, Will began feeding on Monday.

A tube takes the milk into his stomach. It's an encouraging sign, but one we're careful not to get too excited about. Preemies have underdeveloped stomachs, so it's not unusual for them to go on and off feeding tubes repeatedly before getting it right.

Going on and off respirators also isn't uncommon. After breathing through tubes in his nose for a few days last week, Will went back on a respirator Thursday. He's responded well. The oxygen they're pumping into him is basically the same stuff we breathe, not the inflated levels he was receiving last week. Doctors are planning on returning him to nose tubes (C-PAP) tomorrow morning.

Bottom line: Will is heading in the right direction.

Now, onto the really important news: Kindly Dr. Daniel Batton, the head of neonatology, has heard Joel's pleas and allowed us to bring in a small radio or battery-operated TV so Will can hear the final out when the Red Sox win the World Series.

We know the risks of flouting fate by making such arrangements, but we're that confident (foolhardy?)

Nursery rhymes

2004-10-26T11:01:00.000-04:00

Maybe it's all the talk of curds and whey, songs of sixpence or farmers in the dell, but the thought occurred to me while reading Mother Goose to Will: This stuff doesn't make much sense.

Oh sure. The sing-songy rhythms are soothing. Some punchlines are funny, like George Porgie running from the boys or the maid in the meadow telling the flirtatious traveler to take a hike. But a lot of them are as relevant as reading random telephone numbers.

So we're writing our own. Here's a link to one I wrote that my brother, Steve, illustrated.

http://www.illustratoranswers.com/willhenry

Here's another one we're working on:
The Greedy Milkman
There once was a greedy milkman
Whose wife needed a face lift
Her morning eyes stayed awake all day
If you catch my subtle drift

And so the greedy milkman
Hatched a sinister scheme
He doubled the price of cheese
And quadrupled it for cream

Such inflated prices
For stuff like bagels and lox
Gave his wife cheek tucks
And weekly shots of Botox

But nothing lasts forever
And soon clients got the hint
Now the milkman’s customers
Are all lactose intolerant

Poor greedy milkman
The Botox is all gone
And now your wife’s face sags
Worse than Michael Jackson

2004-10-25T20:12:00.000-04:00

Meet the Kurth family.

Daily updates

2004-10-25T16:01:00.000-04:00

Want to eradicate cliches from your vocabulary? Don't have a sick child in ICU. Because all of a sudden, a whole lot seem to apply.

Will's progress is a marathon, not a sprint. We're taking one day at a time. Success is measured in weeks and months, not days and minutes. Things are out of our hands. Will's a little fighter. Good things always come in small packages. All cats are gray in the dark (except Jack.)

Ten days after his tumultuous birth, Will is doing fine, his parents are a little less shell-shocked and the numbing reality that this is going to be a long process is setting in.

Some days are good. Some days are so-so. Most days, nothing much changes. Will's oxygen levels may go up or down, so too his carbon dioxide or his platelettes. Tests show he has a complete set of chromosones, but may still have a genetic condion that may not reveal itself until he grows older.

On the whole, Will has much in common with Boca Raton retirees: What he wants most in life is to lie around, puff on his oxygen straw and be left alone. Rumor has it he also likes good deals on breakfast buffets. Like the Bermuda shorts set, Will comes about it honestly: He wouldn't be doing a lot of goo-goo ga'ing right now if he was still in the womb.

That's what we have to remember. For all the worries, long hours, lousy hospital food and sheer panic whenever the phone rings after 9 PM, we're thankful for a gift few others have: Bonus time with our son. It's amazing how therapeutic a simple hand on his tiny back can be or how easy it is to spend an hour in amazement watching a tiny chest breathe softly.

We're also thankful for everyone's support and interest. We'll try to post updates, anecdotes, observations, nursery rhymes and other silliness regularly in this space.

2004-10-25T12:47:00.000-04:00

The book is "Momma, Do You Love Me?" The answer: But of course.

2004-10-25T12:39:00.000-04:00

Maureen holds Will for the first time. Few things in life can compare.

Link for photos

2004-10-25T03:49:00.000-04:00

We'll try to save some storage space by keeping most photos at Ofoto.com

http://www.ofoto.com

Sign in using my ID, jtkurth@msn.com
The password is lazyboy

Unleashed upon the world

2004-10-21T14:15:00.000-04:00

Friends:

Life is sometimes funny. One minute, you're arguing about lunch. The next, you're in an operating room undergoing what surgeons euphemistically call "Not an Emergency C-Section, but one we better do pretty quick."

So it is that we unleash upon the world Will Henry Kurth, a 2 pound, 6 ounce, 14-inch dynamo of spunk that's already made his parents proud, humbled and terrified.

He was born at 12:05 PM Friday, October 15, about 24 hours after a routine ultrasound at Beaumont Hospital in Royal Oak turned into every parents' nightmare. Technicians alleviated our worries and found no signs of placenta previa (a condition when the placenta blocks the cervix), but instead discovered that our son was dangerously small. At 32 weeks, Will is about the size of a 28-week old.

There was some hope the C-section could be delayed by a few weeks or even days, but overnight tests showed Will's heartbeat plummeting severely.

Sign #1 that you're not leaving for lunch anytime soon: The head of High-Risk Obstetrics hands you a business card, pulls a curtain and begins drawing diagrams.

Sign #2: A nurse throws Joel hospital scrubs and says there's no guarantee there'll be a C-Section soon, but he might want to put them on just in case.

We'd planned on naming our firstborn Henry, but opted for Will because we think he has -- and needs -- a strong one. We're not exaggerating or being melodramatic by saying the next few days were some of the most harrowing of our life. At one point, a nurse told us to "brace ourselves" for his death.

Will is doing better, but could remain in Intensive Care for a few months. Doctors don't know why he's so small, but fear he may have a genetic condition that could make his life challenging. Or maybe not. He could be fine and perfectly proportioned, as at least half premature babies are. Many tests are in our future, but so far, easy answers are elusive. We may just have to wait to see how he develops.

But those are future worries. Today, Maureen and I got to hold our son for the first time, listen to him whimper and see him turn bright red with rage like his mother. We've already fallen deeply in love and are so proud of our son that it sometimes hurts. He has beautiful strawberry blond hair, long eyelashes and a chest like Michael Phelps. So far, his hobbies are sleeping, kicking and opening one eye for a moment, then shutting it.

We're sure there are many more sleepless nights, tears, triumphs and setbacks ahead, but we're trying to handle them with humor, love and -- this is a new one for us -- patience.

Many of you already know about Will's arrival, and we thank you for your support, thoughts and prayers. We are lucky to have you as friends, and him as a son.