And his parents Kristyn and Chad.
This little heart warrior has been through a lot in his first month. Below his mom describes the beginning of his heart story.
At our 20 week ultrasound we found out about a potential heart condition with our baby. With several fetal assessments and cardiologist appointments, we were given several diagnoses before birth and we were told once the baby was born, it would confirm what he had.
During pregnancy we never let this potential CHD affect us. We remained positive and our child would only know positivity and love. No matter the outcome our child is loved and we will do what needs to be to overcome this.
Jaxon was born on September 30th at 8:46am, he was quickly taken away and assessed to get officially diagnosed. I was recovering from a belly birth (c section) and my husband Chad went with Jaxon. After a much needed rest and recovery time, late afternoon we made our way into the NICU in Winnipeg where I saw him being set up to be transported. We had no idea this was happening. He was only 8 hours old and I had not even held my baby yet. We met with the cardiologist who explained HLHS (Hypoplastic Left Heart Syndrome) and what was about to happen in the next few weeks.
By 10 hours old Jaxon was flying out to Stollery Children’s Hospital in Edmonton to get his first of 3 surgeries. His surgery was done at 47 hours fresh and he was a rock star in recovery. We were told 2-3 weeks in Edmonton but we were sent home to Winnipeg 10 days after surgery.
Unfortunately, our stay in the Winnipeg NICU only lasted a few days. Jaxon had an episode 2 days after being home and we were sent back to Edmonton. Here we are for the long haul now until he is stable and gets bigger.
Since sharing this information with me Jaxon has been listed for a transplant and he is currently staying in the PCICU. As you can see we were able to get some beautiful pictures of Jaxon and his family without all of his breathing equipment. But the reality of life in the PCICU is that outfit changes require several sets of hands and oxygen.
Mom went on to say,
To give birth to a CHD child is not how we expected to be first time parents, but it’s our new normal and have been adjusting to life in the NICU since day 1. Every day we celebrate the little milestones – a poopy diaper, good blood gases.
I love that Kristyn and Chad are keeping such a positive frame of mind.
It is hard work parenting, let alone doing it in hospital far from your support network.
Jaxon, your parents described you as a “fighter, adorable, and a turkey who likes to do things on his own terms. Everyone says he is writing his own text book.”
I would say you’re pretty lucky to have this family!