Jaygen’s Journey

On February sixth, Jaygen celebrated his sixth birthday as a happy and mostly healthy little boy. This marks six years since his premature birth. Jaygen was born 6 weeks prematurely although he was behind in fetal development by almost an additional 6 weeks. He spent 22 days in the NICU. Today, he is doing well but still struggles with some issues stemming from his prematurity.

Like many preemies, Jaygen has an impaired immune system. Jaygen’s immune system was weakened enough that he was diagnosed with common variable immunodeficiency (CVID). Basically this means that he is deficient in antibodies and, therefore, is highly susceptible to infections even from low risk pathogens. To supplement his weakened immune system, Jaygen has received intravenous immunoglobulin therapy (IVIG) on a roughly monthly basis for several years. In addition to his IVIG, Jaygen has therapy for sensory issue and speech delays, which are fairly common preemie problems as well.

Jaygen was also diagnosed with failure to thrive. In addition, to dealing with a weak immune system, he struggles to take in enough nutrients to sustain a growing six-year-old boy. His inability to intake nutrition is compounded by gastroparesis, reflux, food-protein intolerances, and celiac disease. As a result, he still relies on a g-tube for sustenance although he has begin to incorporate some oral feedings. He has had his g-tube since 11 months when he had fundoplication surgery to improve gastric reflux and also received a port.

Like all medical children, Jaygen’s medical care requires significant time and devotion from his parents. Jaygen’s parents have double duty for medical care, because Jaygen has a younger brother who receives many of the same therapies. Jaygen’s brother, Brayden was an identical twin born with intrauterine growth restriction (IUGR). He was born at the developmental level of a 25-26 gestation week baby, while his twin, Ayden, was born at the level of a 22-23 week gestation baby. Sadly, Ayden suffered more severe difficulties than Brayden and passed away at 5 months.

Aside from is medical issues, Jaygen is high maintenance like most six-year-old boys. He was excited to begin kindergarten this past fall. In consideration of his medical treatments and immunodeficiency, he began with homeschooling. Surpassing his excitement for school was his excitement for his birthday in February. He began celebrating about a month before with card requests. Since many friends and family members could not attend the party, he had a card party, receiving well wishes from relations all over the country. At his party, the cake provided by Sugar Angel Amber Moore was a welcomed addition.