Ellie Reminds Her Family of the Magic of a Good Snuggle

Eight years and five open heart surgeries later, heart warrior Ellie is still teaching her family valuable lessons about slowing down and living in the moment.

Ellie was born with Atrioventricular canal defect (AV canal defect), a rare congenital heart defect (CHD). Being born with AV canal defect means she was born with a hole in the wall between her heart’s chambers. Ellie required several repairs and eventually a heart valve replacement. She sees Glen Iannucci, MD, at Children’s Healthcare of Atlanta Cardiology’s Alpharetta clinic, who has been an excellent resource and source of reassurance, according to her mom Melissa. Melissa also shared that the Children’s nurses were invaluable when Melissa and Brandon needed to learn skills such as caring for the Nasogastric Tube (NG tube), monitoring vitals and administering oxygen to take care of Ellie at home after her hospital stays.

“Dr. Iannucci has always taken the time to answer our questions, guide our decisions and give us reassurance when Ellie has faced big challenges,” she said. “When we’ve been in the hospital, the nurses explain things well and let us practice different skills, so we can be more confident taking care of her at home.”

Melissa said although Ellie’s medically complex health doesn’t always take the road doctors expect, she forges her own path with joy and appreciates the little moments along the way.

“Having Ellie has changed our perspective on parenting and reminded us to focus on what’s really important,” Melissa said. “If she wants to sit down and snuggle, we do that. She’s not worried about reaching milestones or thinking that she’s missing out on something. She’s just happy with her life.”

Once when Ellie was quite sick, Melissa said members of Children’s Healthcare of Atlanta’s Palliative Care Team, who works to manage stress and symptoms, explains how to fit serious illness into a family’s life, identifies resources and coordinates care teams, told them that there are times when they look minutes into the future and times when it’s hours, days, months, then years. They have learned to take things one decision at a time with Ellie.

“I’ve found that when we look too far into the future, things get overwhelming and can be too much to handle,” Melissa said. “And honestly, I don’t know that I’ve reached the point yet where I can look years into the future for Ellie, and that’s ok. Sometimes there are setbacks and complications, but then we make the next decision and see where that takes us.”

Melissa said she’s also learned that they can’t do everything alone, and they don’t have to. A small act of kindness goes a long way when someone is dealing with a tough situation.

“Throughout Ellie’s health journey, we had so many people take care of us, making meals for us, driving to the hospital to spend time with us, offering to care for Ellie’s sister,” Melissa said. “We even had a neighbor take down our Christmas lights for us when we were with Ellie in the hospital. And having experienced that care, it’s made me more empathetic when people are going through a hard time.”

Melissa said Ellie’s health has been stable for the past few years, and she’s having a great year in terms of her development. She has a big personality and loves music, going to the park, books, school and her friends. Ellie’s favorite person in the world is her big sister, Evelyn.

“Because she spent so much time in hospital, especially when she was younger, they are very close and still to this day appreciate all the time they get to spend together,” Melissa said. “Evelyn helps encourage Ellie to learn new things, and Ellie reminds Evelyn to slow down and enjoy the moment.”

For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.

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