C-ELLA-brating Life: Berrys navigate ups and downs of baby's health issues

Doug Boock
Ella Berry, eight-month-old daughter of Jeffrey and Vashti Berry, continues her battle with problems.

The news was grim. Even the doctor – who wished to give hope – could only shake his head.

That response – signaling a zero percentage chance that Jeffrey and Vashti Berry’s 4-day-old daughter would survive the night – sent tiny Ella Berry’s mother to the chapel at Children’s Hospital of Illinois at OSF Saint Francis Medical Center, Peoria.

There, Vashti did what many mothers and fathers would do: She stood in the gap, for one who couldn’t.

“I couldn’t just sit and watch as my new, beautiful-but-broken, baby girl die,” recalls Vashti, a 1998 Galva High School graduate. “For the next several hours I begged God over and over to let me keep her . . .”

As tears came and went, so did hope. Sometimes here, sometimes not. The quiet of the chapel was deafening. The loneliness of a hamstrung parent in agony was fully known only to herself and the One who made her.

But in the end, Vashti says, God listened. He’s given Ella to Jeffrey and Vashti, at least to this point, some eight months later. Vashti calls it a miracle. That’s how she and her husband are viewing it.

“It’s important for our family to share Ella’s story,” Vashti said. “She is an inspiration. She is a teacher. She is a miracle. And she is a real angel, heaven sent.”

The Beginning

“We learned early on in our journey that life would be an uphill battle. Ella would have to fight. We would have to fight for Ella,” Vashti says of her daughter, born Sept. 21, 2010.

Entering the world with a congenital heart defect, Ella was Life-Flighted to Children’s Hospital of Illinois at OSF Saint Francis Medical Center, Peoria,just four days after her birth. It’s a trip no parent wants to take. Thatnight is stuck in Jeffrey and Vashti’s memories.

“Jeffrey and I were told when we arrived at the hospital that Ella would notsurvive the night,” said Vashti, daughter of John and Kathy Tingleaf ofrural Victoria. “I begged the doctor to give me a percentage: What were herchances of survival? He shook his head . . . None.”

The next day, though, after Vashti’s sojourn in the chapel, Ella was still alive. Her heart was working, though it needed help.

The Condition

Ella’s need for hospital care is abundant. Vashti said she and her husbandhave been told that Ella’s the sickest baby to ever survive organ failure atthe Peoria hospital.

“She will be discussed in medical journals and at medical conferences,”Vashti said.

Ella’s condition includes:

• Her heart functions at half the capacity of a healthy heart.

• She doesn’t qualify for a heart transplant. She has chronic lung diseasethat prevents transplant.

• She doesn’t make any sounds because of a tracheostomy. She is learningsign language.

• Ella was once on 19 different medications at a time.

“She currently takes six heart medicines, an acid reducer, steroids, antibiotics and diuretics,” Vashti said. “She gets therapeutic treatmentsfor her chronic lung disease. Her lungs are ventilator-dependent and she requires a feeding tube and intravenous medication.”

The Struggle

In the months since Ella’s first surgery, Jeffrey and Vashti have been stretched. They’ve often found the times trying.

“Facing an uphill battle means very high highs and very low lows. A roller coaster,” Vashti said. “We celebrate the highs and deal with the lows.

“Some struggles of loving a very sick baby include truly having to remember to breathe. Watching as your daughter struggles for life, literally, takesyour breath away. We have struggled to breathe as Ella’s parents.”

Financially, it’s been tough, too.

“Eight months in an intensive care unit comes with a lot of zeros attached to a couple other numbers,” Vashti said of medical bills. “We will be buried in debt and paperwork for many years to come.”

Celebration

But lest we think it’s all about woe, it’s not. Vashti said.

“Enough about the lows,” she said. “We never dwell long on them. There is too much celebrating to do.”

Celebrating? You bet. It’s what overcomers like Jeff and Vashti Berry – and perhaps pint-sized Ella – do in such situations. They’re seeing cloud linings unmistakably silver.

“Life has felt miraculous, even through the most trying of times,” Vashti said of the journey her family’s been on since Ella was born. “Every day has been a true gift. A celebration.

“Jeffrey and I knew the moment Ella was reborn (surviving her first night in the hospital), that this was meant to be our life. We were meant to be her parents. And Ella was meant to be our broken-heart baby. We needed her as much as she needed us. . . That’s how every day of our journey has felt.

For instance, Vashti celebrated the first time she got to take home a load of pink, “girlie” blankets to wash.

“I was doing baby girl laundry!” she laughed. “Pink. Pink. Pink. I was used to blue and had looked forward to pink. I celebrated laundry.”

“Those are our moments to celebrate,” Vashti said. “Ordinary moments that we have a tendency to take for granted in life. Laundry. Midnight rockings. Ordinary moments that are our family’s extraordinary moments; that’s what we celebrate, still to this day. Celebrate the ordinary because it is someone’s extraordinary.”

The Future

What’s ahead for Ella and her family isn’t clear. Good health or not, they know no one’s promised more than their current breath. But Jeffrey and Vashti have hope – and they have hopes for their daughter.

“We hope for a lifetime with Ella,” Vashti said. “We have set goals for her future. Home is one of those goals. A lifetime of love is another.”

As they knock down goals, the Berrys plan to make sure they pause and reflect – to celebrate.

“We will live each day to the fullest,” Vashti said. “We will make the most of our time together, because we have learned that life is a precious gift. We will continue to celebrate the ordinary.”

Persons interested in following Ella’s journey can visit an online blog Vashti writes. It’s located at www.caringbridge.org/visit/ellaberry.

Jeffrey and Vashti Berry hold their son, Noah, and daughter, Ella, recently.