Kansas infant keeps fighting after multiple open-heart surgeries

Friday, February 25, 2011 | 12:01 a.m. CST

JOPLIN — When her son Peyton opens his eyes, yawns, looks around, seeks out his mom's voice and her warm hand, these are the simple but cherished moments Sheila Dunn lives for.

"Really, I just sit here and wait for Peyton to wake up," she said via phone from her son's room inside Kansas City's Children's Mercy Hospital.

Thanks to less doses of sedation, tiny Peyton is opening his eyes more often now, once out of every three hours or so, she says, and sometimes for as long as 45 minutes.

When these moments occur, Sheila uses every precious second to bond with him. Because of his surgeries, because of all the machines he's still tied to, it's been months since she's been able to lift her baby boy into her arms and cuddle him.

"I interact with him. He tracks with his eyes. He follows me. He talks to me," she said. "I just sit here and wait for these moments ... where he and I can be together."

A continued presence at his bedside, Sheila will often read to him about rainbow fish and hungry caterpillars; about bunnies and ladybugs. And when he's asleep she'll play soft music in a constant loop — sometimes soothing nursery rhymes, sometimes quiet instrumentals, so he won't be bombarded in his dreams with the mechanical sounds of the machinery he's been physically hooked to for more than half a year now.

This isn't how Sheila envisioned spending the first half-year of her son's life. Because of this, she's had many tearful nights. Her husband, Jimmy, continues working during the week at LaBarge Inc. to support the family, and Sheila sees her other school-aged children on weekends.

Through the help of family, friends and faith, members of the Dunn family are taking the circumstances one day at a time.

"That's what everybody says here, when I talk to the other parents, you hear that cliche — 'take it one day at a time' — nonstop. But you do take one day at a time," Sheila said, adding that it's the only way for her to cope with the stress.

"You don't want to. But you have to."

Peyton, the fifth child of Jimmy and Sheila Dunn of Galena, Kan., was born Aug. 20 at Freeman Hospital. Immediately, things went wrong.

The baby boy was in respiratory distress and was cyanotic, or blue-skinned, because of low oxygen amounts. He was evaluated for congenital heart disease, a serious defect with the structure of the heart.

In Peyton's case, the functions of both the pulmonary artery and aorta somehow become switched. So blood returning from the body to the right side of the heart was immediately pumped out to the body without becoming oxygenated.

Peyton was immediately flown to the Kansas City hospital. Twice he had to be resuscitated during the flight. At the hospital, he underwent his first surgical procedure, an urgent cardiac catheterization.

All of this occurred within the first 24 hours of Peyton's life.

He received his first open-heart surgery Sept. 8, where the great heart vessels were "switched" back to their proper place. With Peyton, however, this was a bit more complicated than usual, because the vessels going to his lungs were much smaller than normal, said Melissa Santos, the family's cardiac social worker at the hospital.

Two days later, he received chest compressions. On Sept. 17, the little boy's chest was finally sewn closed.

In all, Santos said, Peyton was hospitalized for eight weeks.

He finally went home to his new house in Galena in late November. Because of poor weight gain and an inability to take adequate calories, Peyton was placed on a Naso-Gastric Tube. He also had a nurse visit him at the Dunn home to monitor the baby's health.

But his stay at home — the only one he's known — was all too brief. It spanned a week.

Shortly after Peyton's discharge from the hospital he was back inside Children's Mercy. It was decided he would require a second surgery to open up his pulmonary arteries. That surgery took place Dec. 1, and his chest was closed up five days later.

He immediately began suffering from "complicated post-operative" problems, Santos said. This included a blood clot in his neck. The boy also suffered sores on his face from the oxygen mask helping him breathe. He had a needle procedure to drain fluid from his lungs. Between Jan. 5 and Jan. 14, his blood pressure dipped dangerously low.

Sheila said the doctor came to her and Jimmy at one point when things were at their darkest and asked if they wanted to "intervene;" in other words, let Peyton naturally pass away, "because he was so sick."

At that point, Sheila said, "it just hit me, just how sick Peyton was."

But Peyton's a born fighter, Sheila said. He survived the first two surgeries and its complications, and hung on during the third surgery, which took place Jan. 24.

"It never dawned on us to give in," Sheila said. "I had a hope, every day, that something better would happen to him."

His survival in the face of adversity, she said, "is a miracle. Every time the nurse came in (with an updated progress report), I would tell her it's a miracle. And she would say it was."

Since Dec. 1 of last year, Sheila has spent nearly every waking hour inside the ICU room — sitting, reading or singing — beside her son's hospital bed. At nights, she catches a few hours of shuteye at the nearby Ronald McDonald House.

Patience, she's learned, is indeed a virtue.

"We've learned to be patient," she said. "Peyton needs a lot of time" to heal. While it looks like the worst is behind him, he will still need to stay in Kansas City for at least eight more weeks, she said.

Sheila has also been described by many as being strong, whether it's from the hospital staff or those who have rallied behind the Dunn family back at LaBarge. Speak to them about Sheila or Jimmy and they have nothing but praise for the two, particularly Sheila.

When asked about that, she laughed. "I don't feel very strong. I cry all the time. It's difficult to see him like this," trussed up to machines, with tubes here and there. "I haven't held him in 44 days."

Peyton turned 6 months old recently. He's been home just once, and for less than a week. While his mother keeps a constant vigil at his bedside, his dad is at home, raising their four other children, as well as working full time at LaBarge. He visits his wife and newborn son on weekends. Sometimes, he brings Peyton's siblings for a quick, intimate visit.

It's during these moments, when her whole family is together in one place, that Sheila is at her happiest, she said. It's the complete opposite when Jimmy and the kids have to leave for home, usually on Sunday nights. She won't be able to touch or kiss or hold her other children, or husband, for at least the next 120 hours.

It's lonely, she says. "I wish (they) were up here more."

There's also a touch of guilt, mainly because she's missing out on what the rest of her children are doing back home in Galena. Her eldest child, for example, is now in eighth grade, "and I'm missing that."

However, "you have to be with the child that needs you the most," she said.

Because Peyton will grow up with just a single coronary artery, "he won't be able to do the things that normal little boys will do," Sheila said. "So we'll have to make sure he doesn't over-exert himself; to monitor his activities. He'll be into music, and not into sports. (But) he will not be raised in a bubble."

As expected, the demands on the family have been tremendous. Because Jimmy is the sole financial provider, they've had to endure months of financial hardship, anxiety and stress. Also, Peyton will require follow-up checks by a cardiologist for the rest of his life.

To help ease the financial burden, donations are now being accepted via an account at the US Bank on Maiden Lane, in the name of Peyton L. Dunn.

And the 365 employees working at LaBarge have already collected $2,500 for the Dunn family, said Susan Henson, a stockroom clerk. Peyton, she said, has become known throughout the company as "LaBarge's Baby."

"We've all just claimed him as our own," she said. "We're all mothers, fathers, sisters and brothers to Peyton right now. We would do this for anyone."

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