Born too soon: One dad's story of preemie twins

Jake's hole was starting to close. Dr. Schwendeman recommended giving him medicine to help speed things up, and we agreed.

Josh's hole was wide open. He needed surgery.

Heart surgery. On this tiny baby.

Jarring as it seemed, everyone told us this operation was routine. They were right. The surgery was Wednesday morning and it went perfectly.

The next morning, I didn't like the way Jake looked. By afternoon, his tummy was swelling and turning purple. At 10 p.m., the color was higher on his chest, higher still at 2 a.m.

He was bleeding internally.

The obvious place to look first was his heart. Nope, that hole was closed.

About an hour later, Dr. Schwendeman came to Lori's room. The problem was in Jake's small intestine, likely caused by the medicine he'd been given to close the hole in his heart. It's the most common stomach problem for babies born so small — and it claims about 1 in 7 who develop it this soon.

A surgeon was on the way.

"If there's only one dead spot, they can cut around it and patch it together, like fixing a garden hose,'' Dr. Schwendeman said. "But if there's more than one hole, there's nothing they can do.''

So on the first Friday of Jake's life, we went to tell him goodbye.

Tricking the angel of death
The day we arrived in the NICU I learned about "compassion care,'' a gentle way of preparing baby and family for death. Nobody said so, but I could tell we were going through the early stages.

All week, we had to sneak a hand into the incubators to touch the boys; now, touching was being encouraged. Dr. Schwendeman also waived the one-visitor rule, letting our family join us in groups of two.

What could our parents say to their dying, 6-day-old grandson? There were whispers of faith, hope and love, messages intended for Lori and me as much as Jake.

We drifted to Josh's incubator. Would he ever get to know his twin?

Nurses urged us to take lots of pictures of Jake. Someone recommended putting my wedding band on his hand to show how small he was. It went over his knuckles with ease. His arms — even his legs — were hardly thicker than a pencil.

Then the surgeon showed up, a tall, white-haired man named Dr. William Dammert, clutching a wooden box the size of a small lunch box filled with his tools.

Given one last moment with Jake, Lori and I talked about what a fighter he was, ever since that first sonogram.

"At least we had him for a week,'' I said. "No matter how the surgery goes, he'll be better off either way.''

Just then, Jake's arm jerked — almost like a punch.

Lori saw it as a sign. Through held-back tears, she showed a hint of a smile.

There was only one thing left to do.

Jake needed a new name. To trick the angel of death.

We changed his Hebrew name from "Ya'akov'' to "Chaim.'' We chose it for its English translation:

Life.

Cause for celebration
The anesthesiologist warned us that if someone returned in a half hour or less, it was bad news. Over an hour meant they were working to save him.

Right around 50 minutes, in walked Dr. Dammert.

"It was the best-case scenario,'' he said.

Talk about joy! Relief. Our little fighter did it!

The following weeks remained tense, with more bad days than good. But our ride on the preemie parents' roller-coaster had more side-to-side jarring than 90-degree drops.

Among the biggest concerns was chronic lung disease, a term that conjured images of a little boy staring out a window, unable to play outside. Dr. Schwendeman assured me it was nothing like that.

"They can grow out of this,'' he said.

On their 1-month birthday, each boy weighed 1 pound, 8 ounces, up 6 ounces from their birthweight — yet they were still considered "micro preemies.'' Their feedings were being increased, but they were still getting less than a teaspoon per hour.

The biggest medical news was that their brain scans showed hardly any bleeding.

To us, it meant another dodged bullet. To the caregivers, it meant more. It was further proof these guys weren't typical; they might be odds-defying exceptions.

Prayers around the world
On May 31, I sent an e-mail called "Jake & Josh Aron — the full story'' to about 80 friends and relatives.

The responses overwhelmed us.

Born too soon Part 1: One dad's story of preemie twins Part 2: In the balance: Preemies' battle to go home

"Please keep in mind that (we) would like to do something, whatever that may be; food, cleaning, grocery shopping, etc. Just let us know what, where and when and we will be there,'' wrote a friend's wife, a woman who, until that moment, I considered cold and unfriendly.

Several people wanted to donate blood in the boys' honor. Others offered advice or just comforting words. And then there were the prayers.

"I've asked my mother to put the boys, you and Lori and Zac on her prayer list,'' a colleague wrote. "Her connections with God are a little better than mine, and I figured the boys could use as many prayers and good thoughts as possible.''

Prayer list? We didn't even know such things existed. Within days, the boys were on lists at synagogues and churches all over the country. My favorite was a fifth-grade class in Kansas City. Those kids were praying for another set of twins in our NICU, the grandchildren of their former teacher; she visited the class and urged them to pray for Jake and Josh, too.

Every e-mail update brought out the best in people.

A lifelong friend facing open-heart surgery called to let us know the twins helped give him courage. A college pal living in Tel Aviv drove to Jerusalem to take part in a centuries-old rite of faith at the Western Wall. Between the rocks, he slipped a piece of paper with these words he'd written:

"Please, God, help Jacob Benjamin Aron and Joshua Caleb Aron overcome the challenges of early birth. Please help them live long and full lives, surrounded by the love of their parents, Lori and Jaime, their brother Zachary, and, ultimately, their own children. Please answer the prayers of all the family and friends who want to see these boys grow up strong and healthy. Thank you.''

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