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Wednesday, December 29, 2004

Postponed

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.

Saturday, December 25, 2004

Miracle at Home Depot



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.

Wednesday, December 22, 2004

Pyloric stenosis

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.

Sunday, December 19, 2004

Moments from a Blissfully Quiet Weekend







Saturday, December 18, 2004

Back again



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.

Monday, December 13, 2004

Siesta

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.

Wednesday, December 08, 2004

Mighty Will



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.

Sunday, December 05, 2004

Life, the unedited version

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.

Friday, December 03, 2004

Inspired sloth

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.”

Thursday, December 02, 2004

Patience



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.