Jaxon’s Story

Site created on October 2, 2020

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. Jax was diagnosed in utero with Hyploplastic Left Heart Syndrome, in which he effectively only has half a heart. He had open heart surgery at 4 days of age and is having his second surgery at 4 months of age. We will have at least one more surgery at 3-5 years of age to attempt to have the best blood flow possible to allow him to grow and be otherwise “normal.” There is always a chance that he will need a heart transplant anywhere along the way, but it depends on this little heart warrior! We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Ashley Goforth

Jax is recovering well after his open heart surgery! He made big strides yesterday. Big steps included:
- eating solid food (and loving every minute of it it! He’s such a good eater, ESPECIALLY for a heart baby!)
- standing
- walking (not too sure about it, afraid he was going to fall, and resorted to just wanting to stand and hug my neck)
- lost some of the IV catheters in his body 
- weaning him off of some medications 
- his echo showed he has normal heart function now!
- has regained his awesome personality now that he feels better and was popping bubbles, laughing, and actually talking to the nurses and therapists (which he usually doesn’t do in the hospital)! He regained his Maui hook today and told everyone “It’s Maui time!!!!” 🤣

We have just a few more goals to meet to make it to the progressive floor (last step before coming home). His siblings are happy about that because they cannot visit him in the ICU but can on the progressive floor. They miss their little brother!!  
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