In the fall of 2017 Kevin and Jaimee Waldner’s daughter Ella was born with HLHS (Hypoplastic Left Heart Syndrome) and Dextroposition (heart is in the middle/right side of her chest).
This resulted in a trip to Edmonton’s Stollery Children’s Hospital for open heart surgery on tiny Ella, in order to survive.
During this difficult time, Kevin and Jaimee took pleasure in the little things.
“One of my favourite things during our stay in Stollery was getting to take Ella for walks around the hospital,” remembers Jaimee. “Our first walk was when Ella was 3 months and 1 day old. We had to check in every 15 minutes and stay within range of a portable monitor, which gave us basically nowhere to go, but we were so excited to get out of the room with Ella that we didn’t care. A smile was plastered on our faces the whole time.”
In time Ella and her parents returned to Winnipeg’s Children’s Hospital. With medications, 24 hour home oxygen, tube feedings, and weekly appointments back in Winnipeg (a 6 hour drive round trip), Kevin and Jaimee were finally able to bring their baby home.
“Arriving home from the Children’s Hospital with our 6 month old daughter was overwhelming,” says Jaimee. “I have deep appreciation for the wonderful services we have in rural Manitoba! The support we’ve been given as a new family with a medically complex child is beyond what I could imagine.”
Ongoing issues with Ella include frightening ‘blue episodes’, which first occurred in June of 2018.
“Ella turned blue, went limp, and was unresponsive,” recalls Jaimee. “I noticed Ella’s blood oxygen saturation’s were lower than her normal, but came up after a few minutes. She fell asleep on the floor where I was assessing her.”
Ella’s cardiologist sent for a holter monitor (24hr ECG), blood-work, optimized a few of Ella’s medications, referred her to Neurology, and ordered an MRI in hopes to pinpoint the reason for her episode, as well as attempting to prevent another one.
At the end of August Ella had multiple ‘blue episodes’ within a 12 hour period.
“After calling 911 we were taken to Children’s Hospital in Winnipeg,” says Jaimee. “A CT scan determined that the episodes were not heart related. Neurology suspects Ella’s episodes were seizures, and if she has any more will need medication to prevent them.”
Throughout this difficult journey Jamiee has relied heavily on her faith.
“Ever since learning about Ella’s heart defect when I was 20 weeks pregnant, I have struggled with ‘why’ I have been chosen to have a ‘sick’ child,” asks Jaimee? “What did I do to deserve these challenges?”
As difficult as those questions are, this incredible Mom seems to have the answer.
“This journey we are on with Ella is bigger than I know, or can even begin to understand,” reflects Jaimee. “Like the many workings of this universe, concepts too big for me to wrap my mind around, Ella’s journey is complex. God has a purpose for Ella’s life, and even though I may never fully understand what it is, I trust that He knows best. While we walk this journey with Ella I will always try my best to stay humble and thankful, for everyday with Ella is a blessing in itself.”
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Listen to mom Jaimee’s radio interview detailing Ella’s journey here: