Jaxston’s Story

Site created on July 11, 2019

Jaxston was born at 33 weeks and just 4 lbs 2 oz.  When I was 20 weeks pregnant with him they told me Jaxston had skeletal dysplasia which means he was going to be a little person. Shortly after Jaxstons birth it was discovered that he has 2 sacral dimples which lead to more investigation of his spine. It was discovered after an ultrasound  that Jaxstons spinal cord split into 2, and the condition is called Diastematomyelia, also known as a split cord malformation. We are hoping to know more about his condition once he gets his MRI this week.  Jaxston spent 7 weeks at Aurora Summit  until he was finally transferred to American family childrens hospital in Madison on July 10th. Jaxston does have a feeding tube in as he is struggling with feedings currently. 

Newest Update

Journal entry by Katie Bird

Big brothers Jorrdyn, and sister Lucile came to visit Jax today!!! Brother is very unsure of the baby!
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