“After he started ta king the bottle regularly we still had to do tube feedings because the work it took for him to take the bottle actually used more calories than he consumed Ð even with his special, high-calorie formula. Once he took to the bottle, he progressed very well through the other stages Ñ baby food to soft table food to regular table food.”
A September 2011 surgery took blood from Eli’s arms, head and neck and rerouted the way it returns to the heart and lungs to get oxygen. His heart rhythm changed with that procedure and he needed a temporary pacemaker. During his next heart surgery, a pacemaker will be surgically placed.
Eli’s next surgery will reroute the blood from his lower extremities. That should further help oxygenate his blood, Jessica said.
“Honestly, for a heart baby, the doctors have said he’s doing well,” she added. “He’s not had a lot of illnesses. But even though he’s doing so well, there’s still a chance something could happen.”
Jessica said they met a family in the hospital whose child has CHDs similar to Eli’s. As they prepared for his third surgery, he “coded” because his heart couldn’t handle the procedure. He’s now on the transplant list. Eli may need a heart transplant someday, but it’s a complicated process as he must deteriorate to a point, yet be strong enough to survive the transplant.
“The series of surgeries he’s going through cannot fix him,” Jessica said. “What our goal is, is to make his heart as functional as possible for as long as possible.”
The Veales hope that getting Eli to his teen or adult years will give him a better opportunity to receive a heart and/or buy time for breakthroughs in heart medicine that could postpone a transplant ever longer.