Tuesday, January 18, 2005

We miss you, Will.

Wednesday, January 12, 2005



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.

Thursday, January 06, 2005

Surgery update

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.

Tuesday, January 04, 2005


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.

Saturday, January 01, 2005

78 days and counting ...

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.