HEART HERO Eloise Margaret

Heart Hero of the Month April 2023

Story by, ❤️Mom & Dad

Dad (Nicholas) – From the moment Kelsey woke me at 3 a.m. to tell me we were pregnant my motto was, “boy or girl, I don’t care as long as they’re healthy.” Hearing the heartbeat for the first time was a surreal experience that I will always hold close to my heart. On the other end of the spectrum was the day in September 2021 after a high-resolution ultrasound at Bryan Fetal Maternal Medicine, we found ourselves in what would later be referred to as the “Bad News Room”. The doctor communicated that the ultrasound indicated our little one had an extensive VSD, DORV and potential transposition of the great arteries. Or at least that’s what I’m told he said. Once I heard CHD, everything else sounded like the teacher in Charlie Brown. I recall holding it together long enough to schedule a follow-up appointment and drive to my parents to tell them. Then, I completely lost it and sobbed on my father’s shoulder. My parents did their best to be reassuring and optimistic, but I just needed to feel sadness.

I did my best to support Kelsey through her pregnancy by attending every appointment and being the shoulder to cry on. All the while, I was quietly struggling until I shared my feelings during an appointment with our therapist. She said, “Nicholas, this is happening to you, too.” Dads typically fade into the background, and I’d say we prefer it that way for the most part. I must admit, hearing those words meant a lot to me.

The remainder of pregnancy was a mix of anticipation, planning and worry. Continued ultrasounds at Bryan and fetal echoes at Children’s in Omaha reassured us that our daughter would likely be able to discharge home after delivery and grow until her first OHS.

Our sweet bundle, Eloise Margaret, Famous Warrior, joined us in January 2022.

After a short stay at the NICU, we made our way home. The focus was on weight gain and staying healthy. This meant charting every milliliter of milk, and our only social engagements were weekly doctor appointments.

In preparing for surgery, we joined the Omaha Area CHD page and were initially vastly overwhelmed but have since embraced the welcoming notion that “you are not alone.” As simple as it was, during one Saturday morning coffee hour, we talked with other families about how to pack for the hospital when March hit and it was time for Eloise’s surgery.

Eloise’s echo left the physicians at Children’s confident that her VSD and DORV could be repaired with one surgery. March 23, 2022, we entrusted our little girl into the hands of Dr. Hancock-Freisen. We walked into the hospital dazed, having barely slept the night before. Dr. Hancock-Freisen talked us through the surgery step-by-step. Together we walked our baby girl as far as the hospital would allow and handed her off to the nurse who took her the rest of the way to the OR.

Surgery felt like an odd form of limbo where time marched on and stood still all at once. The best feeling in the world came when we received the text, “surgery went great, and she’s headed to post-op.” What follows is the difficult sight of your child breathing from a tube, attached to wires, IVs, and monitors that never seem to stop beeping.

We were amazed at how quickly our Famous Warrior recovered. Just 5 days after she was on an operating table with her chest open, the nurse was escorting us to our vehicle to head home. Talk about surreal!

Mom (Kelsey) –As a mother, the hardest part of having a child with CHD was trusting her life in so many others’ hands. From the moment our OB placed her in my arms, I had all the natural instincts to protect my baby. There was nothing we could do to change her situation; we could only do our best to help her grow and select the right people to be part of her medical team and take on all the challenges that we were ill-equipped to handle. Eloise’s cardiologist and pediatrician are professionals we are excited to have the opportunity to watch her grow over the coming years. My husband and I can joke about some of our tougher moments during Eloise’s first 6 months, but we are extremely lucky. She is thriving and meeting appropriate developmental milestones. Eloise’s cardiologist sent us home after her 6-month post-surgery follow-up with directions to “treat her like a normal baby.” Eloise loves music, swimming, and the Aquarium. Our family has enjoyed Eloise’s first airplane ride, her debut at the Superhero Heart Run, and celebrating her first birthday and one year after her heart surgery. We will do our best to follow the doctor’s orders, but to us, she’ll never be a “normal” baby.