Monday, September 10, 2012

ROCHESTER, Minn. — Brad Weitl soaped his hands and put on hospital scrubs and walked down the hallway to where his new babies would shout their first cries.

In two nearby rooms he saw maybe 20 people each with their blue masks and glasses. He could see only their eyes. Some busy, some watchful.

They were the teams of doctors and nurses that waited for little Ava and Aidan.

Oh, my God. This is really happening, Brad thought.

Brad and his wife Christina for months had prepared for this moment in early May, when a Mayo Clinic surgeon cut open her belly and pulled the twins out.

Ava came first. Screaming.

That’s a good sign, Christina thought. The doctors had warned her that Ava might be quiet and lethargic and have bluish skin from a lack of oxygen.

The left side of the girl’s tiny heart is severely underdeveloped, which was first discovered by routine tests in January. It will take three surgeries in the next two years to reroute the way her blood flows to and from her heart to compensate for the defect.

Someone held up Ava for a brief moment. Christina saw her, and then she was gone.

Aidan was born a minute after his sister. Both were a little more than 5 pounds and about 18 inches long.

Aidan was healthy and normal, aside from being born one month premature. The doctors opted for a Caesarean section surgery because they couldn’t risk a spontaneous, natural birth — the stress might have been too great for Ava.

Brad followed his wailing baby girl to another room, where doctors prepped her for surgery.

He gave Ava a kiss and told her that everything would be OK and that he loved her — this girl he had known for only minutes. It might be his last moments with her.

Brad told his baby girl to be strong. He needed her to be strong.

Dr. Harold Burkhart, a children’s heart surgeon, and his Mayo team began work on Ava’s heart about 90 minutes after she was born.

He cut a line down her chest and spread her ribs apart. They stopped her walnut-sized heart with an injection of potassium chloride, which blocks the electrical impulses that make it beat. And they clamped it to be sure it remained still.

Country music played.

Burkhart made a few major changes in the next four hours: He spliced and sewed arteries and veins to make the good half of Ava’s heart pump to her body and lungs, a job that is normally split in a healthy heart. He carved a passage between the upper chambers of her heart.

It’s a temporary fix. For now, Ava’s oxygen-rich and oxygen-poor blood will mix before her heart pumps to her brain and body.

Other surgeries late this year and about two years from now will reroute her blood into one long circuit — where two would normally be. One long circuit only requires half of a heart.

Brad saw his daughter first after surgery. Christina was still recovering from her own surgery.

He walked into the corner room with its glass door and saw Ava with all the tubes and wires hanging off.

He cried and winced, and he wondered: How am I going to prepare Christina for this?

Brad wheeled his wife into Ava’s room the day after surgery. Christina sobbed. She couldn’t speak. She wished it were her with the tubes and wires and hole in her chest.

Burkhart had delayed sewing the little girl back together until the swelling from the surgery subsided. It took about a week.

Christina asked to see it. They pulled back a bandage to reveal the translucent film over her chest. It looked like so much blood underneath.

They later brought Aidan to see his sister and laid him next to her.

He seemed to recognize her and rolled close and put his hand on her cheek. The tips of his fingers went white from his grip.

He didn’t want to let go, either.

Christina DeShaw and husband Brad Weitl waited more than three months to take their baby twins home to Clive after they were born May 8.

Baby Ava’s recovery from heart surgery shortly after she was born was delayed when she had fits of vomiting.

The doctors hoped to teach Ava to feed from a bottle, but her stomach couldn’t handle the thick, calorie-rich baby formula.

Ava had more surgery to stem the reflux. A surgeon cut a small artery from her stomach and sewed it around the top of the stomach to keep her from vomiting the formula and medicenes she takes.

The doctors hoped that removing the stomach artery, which supplies some blood to the organ, would have little effect. But her stomach turned a bluish or grayish color, and doctors worried it might die. They had to wait to see what would happen.

In the next few tenuous days, Ava’s lungs collapsed and sank to critical condition.

Christina called Brad, who had returned to Des Moines to work, and told him to come back to the hospital. They planned to meet with a hospital chaplain.

But Ava Grace pulled back from the brink and has made steady progress since. She still has problems eating and taking her medicines, but Christina has learned how to help her cope.

Every three hours or so, Christina gives Ava a bottle to feed. If she doesn’t drink enough, Christina hooks Ava to a machine that slowly pumps the remaining formula directly to her stomach through a tube in her abdomen.

Christina stayed with the babies in Rochester, Minn., from May to early this month, splitting her time between a nearby hotel and a Mayo Clinic hospital.

Brad works as an estimator for a Des Moines area construction company, and he drove back and forth on weekends.

Christina’s mother, Donna DeShaw, was most often in Rochester when Brad couldn’t be there.

They alternated caring for each child, but Donna was usually charged with keeping Aidan occupied while Christina tended to Ava and learned how to care for her.

Aidan quickly outgrew the confines of Ava’s tiny hospital room — which the family dubbed “the cave” — but relished the time he had with his sister.

He nestled close when Christina laid him down next to her.

Ava is uncomfortable when she eats. The surgery to keep her from vomiting can make it more difficult for her to expel excess air that she swallows along with formula.

Christina has learned how to get the air out. She attaches a syringe to the tube that goes to Ava’s stomach — what they call a “g-tube” — and draws the air slowly out until the syringe becomes hard to pull.

She disconnects the syringe, turns it upward and pushes the plunger to get out the air, and reinjects whatever food she make have taken from Ava in the process.

Christina twists the tube into a port on Ava’s belly when she needs it.

Aidan has developed much quicker than his sister, who is older than him by one minute.

Ava has spent days and weeks heavily medicated to subdue the pain from her surgeries. And she can’t get as much oxygen to her body as Aidan.

Aidan likes to look around and see new things at the hospital or whever he goes.

When he cried at the hospital, his father Brad or grandmother Donna would walk with him to a big indoor water fountain.

Its soft sounds soothed him.

The family returned to their Clive home one week ago. They drove their new minivan from Rochester with little trouble and stopped at a Casey’s General store to buy food and drink for the road. It was Ava’s first time in any building outside of the hospital where she spent her first four months of life.

A handful of neighbor girls and parents lined their street in the western Des Moines suburb, with its curvy roads and newer houses. They put up a big sign to welcome them home.

Brad put the finishing touches on their twins’ nursery with the help of a neighbor girl, Grace, who put up many of the 90 wall decal leaves on the tree with its blue and pink giraffes underneath.

Christina worried at first that putting up the big, cursive letters that spell her daughter’s name could set them up for too much pain if Ava hadn’t survived the birth or surgery. But she and Brad decided to have faith.

They had waited so long for children that they needed to be optimistic, no matter that little Ava had less than a 50-50 chance to live.

No matter what happens, Christina said the pink giraffe will stay in the nursery. Aidan needs to be reminded he has a sister, even if their worst fears come true, she said.

Christina barely recognized her house when she returned from the five-month stay in Rochester, Minn.

The had put in hardwood floors in the main living area and kitchen and carpet in an ajoining room not long before she packed up her life into a big sport utility vehicle.

She was the first inside the house when they returned from Mayo Clinic last week, and she embraced her big black dog Max.

Outside was her big wooden deck and fenced-in backyard.

Her sleep has dwindled to just a few hours each night since she returned. It took a while for her to feel comfortable enough to leave baby Ava’s crib for a night at first, she slept on the floor nearby.

Christina relished some of the normalcy that has returned — like the pumpkin spice mocha she bought at a nearby Starbucks Coffee and the haircut she scheduled in the first few days she was back.

She baked cookies for her father’s annual harvest festival near Carroll.

Christina hopes to return to her manager’s job at ING Financial Services in downtown Des Moines early next month.

She’s anxious to get back to work for the employer that has been so good about giving her time off to care for Ava, yet is worried that she’ll struggle with a shift from a work-driven life to a family-driven one.

Christina and Brad have hired a full-time nanny to care for the twins while they are away for the day.

Ava is fed every three hours from 8 a.m. to 8 p.m., and a pump to her stomach sends her formula slowly through the night.

She takes a total of about a dozen medicenes at several different times each day.

Ava cries from the pain. Her stomach aches.

The nanny, Kim, said she’s never cared for a child with so many medical needs.

If Kim can’t handle the job on her own, Christina said they might hire another nanny to help.

“It’s just a lot to do,” Christina said. “I have to have things highly organized so that she’s not worried about bottles and meds.”

Brad and Christina know that it will take many more days or weeks to adjust to their new life at home. It was scary to take Ava from the safety of the hospital to a place that doesn’t have doctors and nurses waiting nearby to help.

But they’re happy to be home, moving forward, with the little baby boy and girl they had waited so long to touch.

Follow the family’s progress online at http://avagrace-lifewithanextraordinaryheart.blogspot.com