“I’m so grateful for the people who rallied behind us”

Patient Stories |

11/01/2023

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After a tense few weeks in the CVICU, one mom shares her gratitude for the compassionate care she and her baby received.

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

“Paula held my hand through the hardest nights of my life. It truly felt like the sun would never come up.”

Emily Totheroh still gets emotional when she talks about those hard days and nights this past summer, watching her newborn struggle to survive in the CVICU at Riley Hospital for Children.

Her son Brady was born June 28 with a heart defect that had gone undetected before birth. He was transferred emergently to Riley, and at one week old, he had his first open-heart surgery for transposition of the great arteries.

That’s when she met Paula Miller, a nurse on the ECMO team who saw her through the most difficult part of Brady’s journey.

Brady had to go on ECMO (extracorporeal membrane oxygenation) when his little heart and lungs were too weak to do their job after surgery.

“When my little man was on ECMO and unable to be taken off it, I really got into a dark place,” Totheroh said. “ECMO is so invasive and scary … the medications and equipment and staff needed to keep my baby alive … it was gut-wrenching.”

Instead of being home cuddling her newborn and loving on her 3-year-old, she was sitting in the hospital, praying for her baby boy to make it. Nights were the hardest.

“When the sun goes down and you’re postpartum, the emotions really come out,” she said.

“Paula was our night shift ECMO nurse for our sweet Brady multiple nights in a row. She took such great care of our boy. I truly can’t visualize those nights without her. She was so tender and so loving with my little man. She was also thorough and organized and attentive to every detail. She made sure our questions always got answered. She was calm, kind and matter of fact, yet comforting. Paula took the best care of my boy, more than any mom could hope for in that situation.”

Today, Brady is a happy, chunky, 4-month-old.

“He giggles and smiles constantly and is completely in awe of his big brother, Bo,” Totheroh said. “Looking at him now, you’d never imagine the rough start he got.”

The Knightstown mom and her husband, Andrew, won’t ever forget the seven weeks their son spent at Riley. They wondered if they would ever get to take him home.

But the comfort they received from the Riley team helped them through the experience.

“I’m a nurse, and I know what being a good nurse looks like,” Totheroh said. “What Paula did was beyond her job as a nurse. It was one mom looking out for another mom.

“I’m so grateful for the people who rallied behind us,” she added. “The people who loved on our boy and healed him when we couldn’t. The nurses, doctors and other heart mamas on the CVICU. It’s a community unlike anything I’ve ever witnessed.”

Totheroh was so moved by the nursing team who cared for her and for Brady that she nominated several of them for DAISY awards, recognizing outstanding clinical and compassionate care.

Miller was celebrated by her team and nursing leadership in October and said the award is meaningful to her “because I made a difference for that patient and family, and that is what matters most to me.”

Commitment to patients and families comes first, and it shows in the excellent care they receive by every member of the ECMO team, Miller said.

“We are a family as much as we are a team. We are always there for each other anytime we are needed day or night, taking calls or just being there to talk each other through challenging situations. I believe that is what makes us and many other Riley teams special. It is not just a job; it is a mission.”

Totheroh wants to give a shout out to everyone on their team at Riley, including heart surgeon Dr. Mark Turrentine and cardiologist Dr. Michael Johansen, “who was with Brady when we arrived at Riley, took the time to sit with us and help us grasp what was happening, and is now our cardiologist.”

There are too many nurses to mention, but all of them had an impact, she said.

“These people deserve so much recognition. There’s no way I could ever thank them enough for getting my baby home.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org, and Kellie Holan

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