Meet Evan

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.

Meet Rex

Child's Diagnosis: Coarctation of the Aorta (repaired), Bicuspid Aortic Valve, Mitral Valve Stenosis

Has Kerrington’s Heart impacted your journey? If so, how?: The support Kerrington's Heart moms showed us the moment we were thrust into our CHD journey helped us make it through those early days and weeks. They did what others didn't know we needed done. Now that Rex is "stable," the heart mom meetings continue to be a blessing to me. This is a community of women who "understands."

What’s one thing you wish you’d been told at the beginning of your journey?: I wish someone had told me the early days/weeks in the hospital seem long, but would one day be a blip on the radar. I also wish someone had told me early on to celebrate Rex's achievements and milestones whenever they come - he may not hit the target for typical kids, but all he has accomplished IN HIS TIME is amazing and worth celebrating!

What’s one word you would use to describe your journey and why?: Different. With a typical child and non-typical child, I had to throw my expectations out the window and just accept the differences. All children are different, but have one with special needs sort of highlights the differences. Different isn't bad or wrong. I celebrate what each of my children has taught me and what they teach me together.

Please share a little bit about your story:: I didn't know Rex had a CHD until the day before he was born. Back up about ten days when my ultrasound revealed that my amniotic fluid was low and I was put on bedrest. When I went back a week later, the amniotic fluid was normal, but not all chambers were showing in the ultrasound. We were sent actoss town to the pediatric cardiologist where she ruled out more serious CHDs, but informed us Rex needed to come on out (2.5 weeks early) because his CHD was preventing him from continuing to grow in utero.
Rex arrived the next day and was doing well in the NICU for the first week, but was transferred to UK on day 8 so he could be prepared for surgery. The coarctation in his aorta was repaired when he was 13 days old. He spent another couple of weeks learning to feed and gain weight.
Since coming home, Rex has had his uphill climbs, but I am happy to say most of his challenges have not been hear-related, but more to do with developmental delays than anything.
I remember those early days in the hospital when we were clueless and learning all we could about heart function and what Rex's future may or may not hold (healthwise). The moms of Kerrington's Heart met us with open arms and ears. They made sure we were connected with the right hospital staff to answer questions and met some of our physical needs with a care bag and hospital meal vouchers. Now, I look forward to our gatherings so much!