“A transplant is another set of problems,” Jessica said, explaining that, at his age, it’s hard to get the size he needs.
In addition, a donor heart lasts only 7-10 years or 9-13 years, depending upon which study you read. Jessica said 10 years is a fair estimate.
“We’re very happy with where we are,the team we have,” she said.
Eli weighed 8 pounds, 12 ounces when he was born, got down to just under 7.5 pounds, then back up to birth weight at 4 months old.
“It took a long time,” Jessica said. “He’s two and a half now and is 26 pounds, so he’s back on the growth chart Ñ the low end. The doctors are pleased.
“We really don’t know his prognosis. As medicine is now, he’d need a transplant.”
She said the family tries to cross each hurdle as it comes and not worry about issues that haven’t cropped up yet. One challenge for the Veales is avoiding large groups of people, especially during cold and flu season, yet not being too overprotective of Eli.
“We try to protect him, but he needs to experience the world, too,” Jessica said. ‘We have a 5-year-old, so it’s not fair to him.
“It’s hard to explain to Zachary why Eli is ‘different.’ He was only 3 when Eli was diagnosed, so it’s basically all he remembers. He knows Eli has a sick heart and needs a lot of doctor appointments.”
She said Zachary assumed all babies had scars and feeding-tube buttons becau se “his” baby did.
“We involve Zachary in many aspects of Eli’s care,” Jessica continued. “Since our first night home with a feeding tube he got to help push medicines through the tube and program the pump. He knows to alert us if Eli’s pulling at it.
“Zachary has always had a very caring demeanor, and his unique experience as a big brother to a heart baby has only magnified that.
“We eat sleep and breathe this every day of our lives. Every day is CHD Awareness Day.”