Making it home: Two premature boys still had a fight ahead

Editor's note: In the conclusion of a two-part narrative about the struggles of his prematurely born twin sons, Associated Press Texas sports editor Jaime Aron tells of new challenges and hopes and a steadfast goal: to bring them home.

By JAIME ARON

The Associated Press

DALLAS — Seventeen weeks premature, our twin sons were so small, so fragile. And already they'd been through so much.

Josh had undergone heart surgery, Jake a life-threatening bowel operation — and that was just in their first week. They'd received blood transfusions, endured endless medical exams and procedures.

Both still had ventilation tubes down their throats, feeding tubes in their noses, IVs in their heads or arms and all sorts of monitors wired to their chests and feet.

Still, they'd cleared many hurdles since they were born — weighing 1 pound, 2 ounces each — the day before Mother's Day 2002. And now, five weeks and a day later, on Father's Day, we'd reached another milestone.

For the first time, my wife, Lori, and I were offered the chance to hold them, chest-to-chest, what's known as "kangaroo care."

It took three nurses to lift Jake and all his wires out of the incubator and to place him safely on Lori's chest. Scared of doing anything wrong, she cupped one hand under his feet, the other on his back, then hardly moved for more than an hour.

As our tiny son slept, we cried tears of joy, whispering about this special moment we feared might never happen.

We even allowed ourselves another bit of imagining: The day we'd take our babies home.

*

After navigating those first frantic days and tense weeks, we had plenty of reasons to be optimistic — and plenty to worry about still.

There also were terrifying surprises, like the time Josh was kangaroo-ing with Lori and something went wrong with his breathing tube, forcing a nurse to give him mouth-to-mouth. Josh was fine; Lori was shaken for weeks.

Through it all, the hospital staff became more than caregivers, even more than friends. "Like family" is the way most people describe it. To me, it was as if we were teammates — united by a mutual goal, each with a different role, anyone capable of being the star player.

We bonded like teammates, too, learning about each other's lives.

One nurse, Jan, loved talking about her son, Patrick. He'd been a NICU baby, too — one who was abandoned, until Jan and her husband adopted him.

Another nurse, Kim, who spoke with a West Texas drawl, said she drove an hour each way to work, always listening to Don Williams' Greatest Hits. The same obsessiveness showed in her attachment to Jake and Josh, the smallest babies she'd ever cared for.

"They've been in my dreams several times," she said. "I had a bad dream about them when I was on vacation. I got up and called the NICU to make sure they were OK."

*

Though Zac hasn't been mentioned much here, our 4-year-old's world was rattled, too.

At first, we explained that his brothers were born, but were sick. On his first visit, he brought gifts: A blue Beanie Baby for Jake, a red one for Josh, and a picture of himself for each incubator.

We soon started a tradition of bedtime prayers, with Jake and Josh obviously coming first. After his next NICU visit, Zac asked if he could also pray for "all their doctors, nurses and friends."

We knew then he was going to be one heck of a big brother.

Another night, Zac gave me very specific orders before I left for the hospital.

"Tell them you love them," he instructed, "then tell them that I am at home."

*

The day after Labor Day was the boys' due date, yet it was their 116th day in the NICU. Jake weighed 5 pounds, 13 ounces; Josh was up to 6-4. Soon, they were breathing without the ventilator's help.

"All that's left," the doctor said, "is taking all their feedings from a bottle and maintaining or gaining weight."

How hard could that be?

It was.

Severe acid reflux was to blame. Conquering it required a procedure to tie the top of their stomachs; they also got a feeding tube in their bellies.

And we were done. Finally.

Jake came home Nov. 25, his 199th day in the NICU. Josh left a week later — in the middle of Hanukkah. It was the night we lit five candles, and we loved the symbolism: The five of us. Together. For the first time. Home.

*

Life outside the hospital wasn't the end-all we expected.

Plenty of challenges lay ahead — a procedure to repair Josh's throat, likely damaged by a breathing tube; hundreds of hours of therapy to develop muscles and conquer eating problems; ordeals with the "buttons" where the feeding tubes attached. ER trips. Even a weeklong hospital stay because of a lung virus.

Still, slowly but surely, there were fewer doctors' appointments.

And look at them now.

Jake is a budding musician, and Josh is becoming quite the artist. Their personalities are totally different — Jake's an extrovert, Josh an introvert — but both love video games, sports and messing with their big brother, typical 6-year-old stuff.

Yes, they turned 6 on Mother's Day.

Jake is 3 feet, 6 inches and 34 pounds, Josh 3 feet, 5 inches and 32 pounds. Jake has darker hair and skin, Josh more curls and fuller cheeks. Both have killer smiles.

While they can't grasp their story, we look forward to eventually explaining it all, letting them read the old e-mails, the responses and the journal I kept.

Zac is 10 and starting to understand everything his brothers went through. This past school year, he wrote several stories about their scary times.

*

Sure, there are some lingering problems: Josh has asthma and a soft, raspy voice; Jake's permanent front teeth will never grow in. But that's it. Big deal.

Which inevitably makes us ask, why us? Why were Jake and Josh among the 1,201 multiples born so small in 2002 who made it instead of the 1,367 who didn't? Why did both boys not only survive, but thrive?

We don't know. We do know how much this journey has changed us.

There are big-picture things like a new faith in medicine and a strong faith in faith itself. We don't go to synagogue any more often than before, but you can't tell me all those prayers, and all that love directed toward these guys, didn't make a difference.

Another tightened bond is our marriage. By most accounts, that defies the odds, too.

I've come out of this with silver hairs around my temples, and fragile emotions, leaking tears at anything that tugs the heart strings.

Which brings us back to where I began, choked up during my speech at a March of Dimes event. I was trying to give an update on the boys, but couldn't.

Lori came up to console me. She wound up taking my place, picking up where I left off:

"By now, I'm sure you realize that we are the proud parents of miracle babies."