“The waiting is the hardest part
Every day you see one more card
You take it on faith, you take it to the heart
The waiting is the hardest part...”
Tom Petty — The Waiting
OKLAHOMA CITY — Last week, the world ended.
The earth stopped rolling on its belly, the stars failed to shine, and time quickly came to a halt.
At least it did for me.
For several months now, my wife, Karen and myself, have lived in that gray area between sadness and euphoria. We were elated by the birth of our fourth child, Zachary, but overwhelmed when we learned of Zach’s life-threatening heart defects.
Since then our lives have been a roller coaster of emotions — stress fear, reason, love, anger and those practical elements of life: schedules, doctor’s appointments, insurance nightmares, money and the myriad typical household problems that drive “normal” parents nuts.
The fear reached its climax last week.
•
After Zach’s first surgery (detailed in two previous American stories late last fall) Karen and I finally were able to be parents.
From the end of November through February, Zach thrived. He gained weight, grew in height and developed his own, unique personality.
He smiled often.
He wanted nothing more than a full belly, a warm blanket, and to be in that safest of all spots — his mother’s arms.
And there, Zach spent most of his time.
Honestly, I don’t know why we bothered to get a crib because Zach spent very little time in it. Between his mother, grandparents, siblings, friends, relatives and all those people who just “like babies” Zach did not want for love or attention.
He also proved to be a serious chick magnet.
In December, during one of those last minute, “let’s run to the mall” type adventures, I got the rare — read that literally — privilege to be Zach’s keeper. Karen, Sara, Clayton and Ethan had shopping plans, so it was just me and Zach.
Of course, since traveling with Zach was akin to traveling with the 45th Infantry — you’ll need supplies.
Lots and lots of supplies.
We had the collapsible, regulation-use stroller — complete with sun roof, plushly padded interior and its own milk supply.
We had the official diaper bag — also known as the baby’s portable closet — with spare clothes, diapers, toys, diapers, milk, diapers, mommy’s keys, diapers, previously lost-but now-found-ATM card, diapers and a handful of diapers.
We also had several spare blankets, a couple of Zach-sized hats and one brown pair of little baby shoes in the shape of monkeys.
I liked the shoes.
As the rest of my family scurried through the mall like so many deranged rodents, Zach and I — he was wearing the monkey shoes — found a large, comfortable couch and watched the Christmas shoppers stroll by.
I’d assumed we’d be by ourselves.
I was wrong.
Little girls, old granny ladies, moms, and several really attractive cheerleader types all stopped to coo, talk, flirt with and generally admire my youngest son.
“How old is he?” one asked.
“When was he born?” quizzed another.
“What’s his name?” a little girl wanted to know.
One woman, who smelled really good — and who looked like a Victoria’s Secret model — wanted to hold him. Briefly I considered granting her request, but stopped short, after having a vision of my wife sprinting across the mall with Christmas packages in one hand and a small caliber revolver in the other.
The gun would have been pointed at me.
“I think he’s wet and he kinda’ leaks,” I said.
“Oh,” Victoria’s Secret girl answered. “I understand.”
She seemed a little down, but I knew her disappointment would be far easier to deal with than my wife’s wrath.
So we didn’t mention Victoria’s Secret girl.
Anyway, by the time my family had returned, Zach and I made several hundred new friends — all on a first named basis.
Then, time began to accelerate.
•
The holidays passed, Karen returned to teaching and I returned to the world of journalism.
Zach continued to grow.
He now was having full conversations with anyone who would listen and while those conversations sounded more like a blend of Swahili and Latin, we didn’t care. Zach smiled frequently, learned that really loud burps entertained his two older brothers, and continued to thrive.
Slowly, the scar on his little chest faded — instead of an angry red line, it became a thin, whispy mark — a simple reminder of just how fragile life is.
Zach also discovered his swing.
Despite the fact this contraption was designed by an evil, unbalanced engineer with a fetish for seatbelts and Velcro, Zach learned that swinging was fun.
He’d giggle and laugh and then, overcome by the back-and-forth movement, he’d sleep.
January faded into February.
And February raced into March.
As the snow and ice melted, we again were reminded that Zach had a heart defect.
His blood oxygen level — which for months now had been in the high 80s — began to slowly drop. He became more irritable and his appetite began to decline.
All signs that we were quickly approaching Zach’s second heart surgery.
And this surgery, we knew, was far more serious than the first.
•
Doctor Marco Paliotta — Zach’s surgeon — scheduled the surgery for March 10.
By March 5, we were in Red Alert mode.
Still, several steps remained before the actual surgery.
A few days before he went to the hospital, Zach underwent a cardiac catheterization procedure. The procedure would test his heart’s pulmonary vascular resistance. That resistance must be at a certain level before the surgery can take place.
Karen and my parents were with Zach during the short, hour-long procedure. And despite my wife’s tears, things went well.
Zach passed and was OK’d for surgery; we moved to the second step.
Preadmittance to the hospital.
More paperwork, insurance cards, telephone calls and documents to sign (Zach, now, has a huge notebook filled with documents all detailing his four, short months of life, which already fills one shelf at our home).
Once we were preadmitted, Karen and I rearranged our lives to accommodate our life at the hospital.
We knew things would be difficult.
But we weren’t prepared for the fear.
•
At OU Children’s the surgeries take place on the third floor.
Just down from the operating theater, there’s a small waiting room with cream colored walls, overstuffed furniture, a telephone and a television.
The television is for entertainment.
The telephone is for the call.
The telephone call from the nurse saying the surgery has started.
The telephone call from the nurse saying they were about halfway through the surgery.
The telephone call from the nurse saying the surgery was over.
The telephone call from the nurse saying Zach was OK.
At 7:30 a.m. last Monday, Karen handed a sleeping Zach to Debbie, the surgical nurse. Debbie was the same nurse who took care of Zach during his first operation and I found comfort in this fact.
We wouldn’t see Zach again until 1:30 that afternoon.
•
It’s called a Hemi Fontan.
Developed in France in 1971, the surgery is named after Doctor Francis M. Fontan, who originated the procedure.
The Fontan, our doctors told us, is used on children with complex congenital heart defects and involves diverting the venous blood — blood needing oxygen — from the right atrium to the pulmonary arteries without passing through the right ventricle.
The Hemi is part one of a two-part operation.
Also known as a Bidirectional Glenn procedure, this surgery requires the doctors to redirect the oxygen-poor blood from the top of the body to the lungs.
In short, Zach’s pulmonary arteries were disconnected from their existing blood supply. His superior vena cava — which carries blood returning from the upper body — was disconnected from the heart and redirected into the pulmonary arteries.
Zach’s inferior vena cava — which carries blood returning from the lower part of his body — remains connected to his heart.
According to several different medical reports, since 1971 thousands of the Fontan surgeries have been done in the United States and, today, the Fontan is used when a child only has a single effective ventricle, either due to defects of the heart valves, a problem with the heart’s pumping ability, or has complex congenital heart disease.
Children with heart defects like Zach’s usually have a single effective ventricle supplying blood to the lungs and the body and “are delicately balanced between inadequate blood supply to the lungs and oversupply to the lungs.”
Because of this, that lone ventricle is doing almost twice the amount of work — it has to pump blood for both lungs and body.
The result of this problem is simple: Children like Zach have trouble gaining weight, and can have major complications from things as simple as minor illnesses or colds.
But those problems pale compaired the larger issue.
Without this type of surgery, Zach would die.
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