Evan, age 6

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Child's Diagnosis: Tetralogy of Fallot

Has Kerrington’s Heart impacted your journey? If so, how?: They have given me love and friendship and support from a shoulder to cry on, an ear to listen, or money for the vending machines.

What’s one thing you wish you’d been told at the beginning of your journey?: That it's OK to fall apart.

What’s one word you would use to describe your journey and why?: Educational. I have learned so much, from medical terminology to who I am as a mother/wife, about love and faith, hope and fear. It has been an eye opening journey.

Please share a little bit about your story:: We found out at 24 weeks Evan had TOF. He was born at 36 weeks by c-section. He was blue and cried out a few times before he stopped breathing. He was taken from Central Baptist NICU to UK Children's Hospital PICU. The next day, he had his first heart surgery to place a shunt to get more blood flow to his lungs.

The bottom of his incision became infected with MRSA, and we had a long fight as well as 2 more surgeries to heal it.

He had trouble gaining weight. At 7 months, he was only 10 lbs. I learned to place a NG tube so he could be fed overnight as well as putting what he did not finish from his bottle.
He had ear tubes due to multiple ear infections. At 1 year old, he had his heart repair and rocked it! He went home on day 5!

Today, he is a happy boy! He had 3 teeth extracted and will need to have surgery on his right ear in a few years due to the hole from the ear tubes not closing. He is a little small for his age but is a typical 6 year old boy.