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Baby girl’s family seeks aid

August 25, 2018 GMT

Despite doctors stating the different limitations a baby born with Down syndrome would have, 11-month-old Ellie Jessen continues to make strides to prove them wrong.

Ellie is making big leaps in recovery after spending the last 10 months in and out of intensive care units.

“I think she’s going to be much different than everyone has told us,” said Shayla Jessen, Ellie’s mother and a Columbus native. “She has always been hitting typical milestones like any other kid would hit. She does everything else that everyone else could do. She’s just a little extra.”

After being born Sept. 28, 2017, in Hastings, Ellie had rough several months, resulting in several trips to the emergency room and intensive care units. When doctors announced Ellie was born with Down syndrome, family members were left with a rush of mixed feelings.

“It was really really intense,” said Shayla, who currently lives in Grand Island working as a special education teacher. “It’s was just so much to take in thinking about how some of our days are going to be sometimes a little different, but it’s hard not to love her when you see her … She’s just a happy baby.”

Ellie was also diagnosed with an atrioventricular septal defect, a heart defect in which there are holes between the chambers of the right and left sides of the heart, and the valves that control the flow of blood between these chambers may not be formed correctly. Ellie was born with four holes in her heart and only two chambers instead of four, which caused her to have trouble breathing and resulted in numerous trips to the ER.

“They had her hooked up to all kinds of monitors,” said Sharla Rudy, Ellie’s grandmother. “They had feeding and ventilation tubes in.”

Ellie was life-flighted to the Children’s Hospital & Medical Center in Omaha days after her birth for further testing and underwent open heart surgery in February to rebuild her chambers and fix the valves. As Ellie was beginning to make strides in recovery inside the ICU, more issues arose.

Just before Ellie was able to return home, both Shayla and her husband, Isaac, took up classes to learn cardiopulmonary resuscitation (CPR), which came in handy when trouble struck the family months later.

Ellie was battling a cold in April when she suddenly stopped breathing. Shayla conducted CPR and Ellie was transported by plane to Omaha, where she then had complications with a blood clot in her leg.

“It was pretty bad,” Rudy said. “They didn’t know that was going to repair.”

Rudy added the surgeon at the hospital told family members, “You need to prepare yourselves (because) you probably won’t be able to bring her home,” which was heart-wrenching news for anyone to hear.

But Rudy said Ellie beat the odds and made big leaps into recovery, which landed her home weeks later.

“She is home and beautiful,” she said.

Rudy said Ellie is currently making progression through the early intervention program at the Grand Island school system.

“She’s doing well,” she said. “A lot of kids that have been through this have to have a feeding tube … she does not.”

Family members will be hosting a benefit for Ellie at 11 a.m. on Sept. 16 at the Columbus Housing Authority, in hopes to raise funds to help the family with medical fees and to introduce Jessen to the community.

Approximately 81 area businesses have made donations to the family and/or provided items to auction off during the benefit.

“We are just grateful that so many people are willing to come together and help us,” Shayla said. “I am just really excited to see all the people who come because I know there are a lot of people especially (in Columbus) that haven’t even got to meet (Ellie) yet and I think that is going to be the most exciting thing…”

Natasya Ong is a reporter for The Columbus Telegram. Reach her via email at natasya.ong@lee.net.