Can tiny fighters make it home?
Second of two parts
DALLAS - Seventeen weeks premature, our twin sons were so small, so fragile. And already they'd been through so much.
Josh had had heart surgery, Jake a life-threatening bowel operation - and that was just in their first week. 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.
More Coverage Links Jakeandjosh.net homepage Stories Twins born too soon fight for lives [06/16/08] Can tiny fighters make it home? [06/17/08]
For the first time, my wife, Lori, and I were offered the chance to hold them.
Many times, we had watched enviously as other NICU parents got to do what's known as "kangaroo care," gently cradling their infants chest-to-chest. When our turn finally came, there was a catch: Only one of us could hold one of the babies. Lori deservedly got the honor.
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.
They say these sessions are therapeutic for the babies and, indeed, Jake's monitors showed he liked it. I think it's even more therapeutic for the parents. 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.
A new goal
After navigating those first frantic days and tense weeks, our concerns shifted - from whether the boys would take their next breath to how much longer they'd need the ventilator. We still called the NICU first thing each morning, but there was less fear as we dialed.
As optimistic as we were, we still had plenty to worry about. The boys' eyes and ears had yet to be tested, and it would be months before the follow-up scan to make sure there wasn't any bleeding in their brains. Infection was a constant concern, especially when a NICU neighbor was attacked by a preemie's most dastardly devil: the lung virus known as RSV.
And there were terrifying surprises - like the time Josh was kangaroo-ing with Lori and something went wrong with his breathing tube.
Seeing trouble on the monitor, a nurse threw back the privacy screen, pulled Josh into his incubator and gave him mouth-to-mouth. Soon enough, he was stabilized and got a new breathing tube. Lori was shaken for weeks.
Through the highs and lows, 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, especially whenever one of our boys faced a problem he once had. You see, Patrick was a NICU baby, too - one who was abandoned, until Jan and her husband adopted him.
Zac is waiting
Our 4-year-old's world was rattled, too.
We did our best to keep life normal for him, except for that first week, when he bounced between his cousins' homes.
We explained that his brothers were born, but were very sick. He wanted to see them, so we let him. He even brought gifts: A blue Beanie Baby for Jake, a red one for Josh, and a picture of himself to put in each incubator. Later, once Lori recovered and I returned to work, we developed a routine. She spent about four hours at the NICU during the day, then met Zac at home after school. We all had dinner together, then I'd put Zac to bed and go to the hospital.
We also 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."
Home. Waiting for them to arrive, waiting for our family to be united. As spring led to summer, we knew we were getting closer, step by developmental step.
On Aug. 9, exactly three months after Lori's water broke, Jake and Josh moved into the same crib, putting them side-by-side for the first time since the womb.
Several weeks later, Zac came to the hospital for a visit and a party, the annual NICU Reunion, where there'd be a bounce house, face painting and all sorts of games for several hundred "NICU graduates" and their families.
En route from our boys to the party, I saw a family gathered around a nearby incubator. I didn't think much of it. But when Zac and I returned, a white plastic flower was on the outer NICU door - the signal a baby had just died. The joy of the party evaporated. While we were playing, celebrating success stories and dreaming about being back next year as graduates ourselves, that family was turning off machines.
Long last steps
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.
Later that week, Jake had a follow-up operation, reconnecting his bowel. Soon after, we rejoiced when both boys 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? The boys had defied so many odds that we took for granted they would master the seemingly simple task of bottle feeding.
By early October, we knew something was seriously wrong. Both boys cried when a bottle came anywhere near them. They almost always spit up, sometimes losing the whole meal. Both had severe cases of acid reflux. They needed a procedure to tie the top of their stomachs, preventing them from throwing up. They'd also get a feeding tube inserted into their bellies so they could receive nourishment while battling their oral aversion. By the time all of this was completed, it was November.
And we were done. Finally. On his 199th day in the NICU, Jake was unplugged from all the monitors and placed in his carrier for the ride home. We closed out a multimillion-dollar hospital tab, luckily covered by our insurance.
It was Nov. 25, a few days before Thanksgiving. We knew how much we had to be thankful for. Josh left the NICU 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.
'Miracle babies'
We soon learned that life outside the hospital wasn't the end-all we had built it up to be.
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 the dreaded RSV.
Still, slowly but surely, there were fewer doctors' appointments.
And look at them now.
Jake is a budding musician, and Josh is quite the artist. Their personalities are totally different - Jake's the extrovert, Josh the 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 explaining it all, letting them read the old e-mails, the responses and the journal I kept.
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 didn't make a difference.
Another tightened bond is our marriage. By some 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."