We often take things for granted – the roofs over our heads, food on our plates or something as simple as going for a walk. But for Jaimee and Kevin Waldner, nothing is taken for granted and each moment in life is cherished.
The simple act of taking their daughter, Ella for a walk was exciting for them. While this may seem mundane to many parents, a walk through the halls of the hospital with their three month old was special. Ella was born with Hypoplastic Left Heart Syndrome (HLHS), which causes the left side of the heart to not form properly, affecting blood flow, and Dextroposition, when the heart is located in the middle to right side of her chest. Just days after birth, Ella had open heart surgery at Edmonton’s Stollery Children’s Hospital in order to survive, and another at 4.5 months. The chance to take Ella for a walk was a big step.
The best walk though was the one through the hospital doors when Ella was able to leave when she was six months old. While she still required medications, 24-hour home oxygen, tube feedings and weekly appointments at HSC Winnipeg Children’s Hospital, her parents were thrilled to finally have her at home.
While this was the answer to their prayers, the road ahead was not smooth. Before her first birthday, Ella began to have frightening “blue episodes,” says Jaimee. “Ella turned blue, went limp and was unresponsive.”
Several tests were performed to determine the cause, and an electroencephalogram (EEG), finally confirmed abnormal brain activity, meaning the episodes were seizures.
“They present differently than one might expect a seizure to look, which is why it took so long to identify that for Ella,” says Jaimee. Five months after her first episode, Ella was put on medication, which has been successful in eliminating the seizures.
Her heart condition is more difficult to treat. Her big little heart is not currently suitable for the Fontan procedure (the heart surgery used to treat HLHS), as her pulmonary arteries are just too small, but the family remains optimistic about the chance of surgery later.
“We are in a wait, pray and see situation, hoping for change or improvement that would allow for a successful surgery. But we are very thankful and grateful for happy days we have with her, safe and stable at home,” says Jaimee.
And there are many happy days. “She is happy, learning and growing!” says Jaimee of her daughter. The now three-year-old enjoys baking pretend goodies with her mom, dad and dollies, gets giddy about anything Paw Patrol, and loves to be outside, no matter the weather. She is currently practicing how to bear more weight and take steps with a helping hand.
Jaimee is forever grateful for each and every day with Ella at home, and to those that make it possible.
“We are very thankful of the safety the hospital provides when Ella needs it most, but we are also very thankful for the wonderful doctors and nurse practitioners who run a wonderful outpatient program as well. Keeping Ella’s health stable and well maintained so that we can spend more time home to grow and thrive,” says Jaimee.
“We know Ella wouldn’t be where she is today without a dedicated team at Children’s, and we are extremely thankful for them and to be blessed to have their services available to us.”
When a child like Ella is in need of care, nothing can be taken for granted and HSC Winnipeg Children’s Hospital’s skilled staff and top-of-the-line equipment are here to support countless families anytime it’s needed.