In God’s hands, infant living with grave illness

When Kristi Pena wakes up every morning, she checks on her baby boy and thanks God the heart of her 15-week-old is beating.

Her son, Christopher, was born in late April with severe dilated non-compacted cardiomyopathy. It’s an illness with no cure, and doctors gave the youngster six months. It’s been more than three.

The 27-year-old Richland mother had to stop working to care for Christopher.

Christopher’s dad, Chris, works all day as a painter but calls Kristi repeatedly to see how little Christopher is doing. Chris said when he gets home, he always checks him for swelling.

Doctors said Christopher’s health will gradually decline. He’ll swell and eventually go into cardiac arrest.

“That’s the part that scares me,” said Chris, who’s 31. “There’s pain involved with (cardiac arrest).”

He’s the youngest hospice patient Susan Verucchi, director of Clyde’s Hope, has ever encountered.

Verucchi, who is in charge of a nonprofit organization that assists families of hospice patients, is teaming up with Kristi to hold a fundraiser today to help the young family make ends meet.

It’s at Richland’s Eastside Park from 10 a.m. to 2 p.m. and will have family-oriented activities.

“(The fundraiser) will help us to not worry about how we’ll eat or pay the bills,” Kristi said.

Chris said in today’s tough times, it’s difficult not having both incomes.

Christopher wasn’t always a hospice patient, but after more than two months in hospitals, the young family decided to take him home to Richland. Chris said he was attached to cords, which made holding his son difficult.

The couple said they made the difficult choice for many reasons. They didn’t want Christopher to spend his whole life in a hospital. They wanted Christopher to meet his 10-year-old brother, Justin.

And they trusted in God.

The past 15 weeks have crept past – a stretch that Kristi said has felt like a lifetime.

Christopher is on 10 different medications with dosages needing to be delivered at all hours.

“We’re like vampires,” Chris said, as the duo wakes up to give dosages at midnight and at 2 a.m.

Eating is tough for Christopher, who has gained weight since he’s been home in Richland. While in the hospital, he couldn’t gain weight, Kristi said.

“As a heart patient, eating is like exercise,” said Kristi, who is music director for Grace Baptist Church.

His eyes are still a piercing blue, and Kristi said she’s uncertain what color they’ll turn.

“As long as they pop open all beautiful and bright-eyed, I don’t care what color they are,” she said.

The couple are relying on their faith and said they expect the best. Chris said what happens next is up to God.

“People hear the story, and they cry,” Kristi said. “He’s not gone. He’s here. Save those tears.”