We Walk As Lions: Jonathan's Heart of a Lion

On my birthday last year I spent the day at our first official Fetal Cardiology appointment. This year I'd like to spend my birthday giving back to others.

One year ago our youngest child, Jonathan was diagnosed in utero with a congenital heart defect known as Hypoplastic Left Heart Syndome (HLHS) which essentially means he is missing the left side of his heart. Due to the immediate intervention needed to keep him alive, Jonathan was born at Children's Hospital Colorado. He spent the first couple months of his life living on the Cardiac Intensive Care Unit (CICU) and Cardiac Progressive Care Unit (CPCU), with several readmissions in the following months.

Jonathan underwent his first open heart surgery, the Norwood procedure at 4 days old. His second open heart surgery, the Glenn procedure was completed at 4 months old. His third and hopefully final open heart surgery (Fontan) will take place after he reaches 2 years old.
While these procedures can never give him a whole heart, they do make it possible for his body to sustain life. We are forever grateful to all of the medical staff and families who came before us that made these scientific and medical advances possible.We are also indebted to the entire medical team who provided care for Jonathan (and us) through his stays at Children's Hospital.

During his time there he faced many life threatening and critical situations. At one point, in addition to his primary cardiac team (many cardiac providers and nurses plus social worker, chaplain, psychologist, feeding therapist, speech/language pathologist, occupational therapist, physical therapist etc) he was also being followed by general surgery, GI, neurology, hematology, and urology. On those days it was extremely difficult to leave Jonathan's hospital room for even a few minutes for fear of missing one of these teams when they rounded on him.

We survived on the support of our family and friends, and the kindness of strangers. For instance, a friend brought us a bag filled with snacks and even travel mugs which were a welcome relief to drinking cold coffee out of paper cups.

Often times items like mobiles for the crib are hard to come by on the unit and we were so grateful to the folks who donated a gift bag with a small mobile and other baby toys to help distract Jonathan when he was uncomfortable.

The day it was confirmed that Jonathan had suffered a stroke, I was devastated. I felt like I had reached the breaking point of being able to hold my head up to hope and believe that Jonathan would be ok. We had no idea what the future held with the severity of the injury to his brain. I sent up a silent prayer to God asking for help, for some type of sign that He was still with us and with Jonathan. About an hour later we received a gift bag for Jonathan donated by the family of another heart warrior (who did not know us). In this bag was a stuffed animal - a lion plush with an accompanying storybook about a lion.

Lions had become the theme we associated with Jonathan before he was born and we continued with the theme after his birth. So in that moment of despair when we received an anonymous gift donation containing lions, I felt assured that everything would be okay.

The lion featured on the tshirt is another gift that brought us comfort. It is the original artwork of Vickie Leigh Krudwig, whose grandson has been battling HLHS alongside Jonathan.

I would like to include portable soothers in our donation. There were many times Jonathan had to remain in his bed, unable to be held or rocked when he needed comfort. I just happened to bring a portable infant soother in our suitcase. We were able to place it in the crib and it provided soothing vibration (similar to riding in a car) which helped to calm him. It was a life saver for Jonathan and my heart as a momma when I couldn't cuddle him.

While none of these things altered the course of Jonathan's fight and recovery, they brought significant comfort to us. We deeply believe in paying forward the support and love we received.

Your contributions toward Jonathan's Lion t-shirt will help us in our mission to make life a little easier for other families. We would also love to hear from you about anything you found helpful if you have ever endured a long hospital stay with your child.

Thank you for all of your love and support!