Kennedy is 8. She is from Jefferson City.
Diagnosis: Preemie, Short-Gut, Autism, Pediatric Feeding Disorder and bronchopulmonary dysplasia (BPD)
Kennedy was born premature at 24 weeks. Mom had HELPP syndrome and was very sick. Kennedy’s blood pressure dropped, and they did an emergency C-Section. This was the scariest time of my life. I didn’t know if we would lose my wife and my daughter at the same time. The doctor asked which one I wanted to save if a decision needed to be made.
She weighed 1 lb, 3 oz at birth. She could fit in the palm of her dad’s hand. She spent 470 days in the NICU (14 months) and had all of her “firsts” in the hospital. 7 nurses in the NICU became our second family. Kennedy was very sick; she had infections and viruses. She had to have heart surgery when she was 1lb 3 oz. That was the first of 12 surgeries. She had eye surgery, and they tried to extubate so she could try to breathe on her own 7-8 times, and they had to do an emergency tracheotomy. She developed an oral aversion, so they put in a G tube for feeding. Due to complications, she developed short gut syndrome. She was dusty gray and bloated. Surgery was a minimum of 4 hours,s and the nurse stayed with Kennedy the entire time she was in surgery. The doctor was scared; she had tears running down her face. She had developed an infection that was eating away at her stomach. She only has 7 centimeters left of her intestine after the virus affected her, so they put in an ostomy bag.
We are so appreciative of the NICU faculty and staff. Kristen wrote a book about Kennedy’s stay in the NICU, and now they donate proceeds back to the place that saved their daughter’s life. The Book is called Kennedy Ann The Princess with a Few More Accessories: NICU Journey
She is learning and growing every day! She’s now fully verbal, on Gattex working towards being TPN free. She’ll be attending Feeding School again this summer in Omaha. This last year has been a big one! She was a little sister in the Miss Missouri Pageant, was on the Jumbo Tron at the Blues Game dancing with a Blue Crew Girl this past fall, and went to Disneyland for the first time this summer. She loves dance at Columbia Ballet Academy, reading, swinging, dressing up, watching YouTube, and playing outside.
Her parents are Kristen and Kevin Hartmann