Haylee is a sassy, smart, and determined three-year-old from Overland Park, Kansas. She loves her friends, princesses, animals, and playing outside. Haylee’s story inspires us to show up and advocate for those we love.
Kati and Derek were expecting their third child in 2018. Kati was followed closely by a neonatologist specialist because the couple had lost their son Jaxon shortly after birth at 31 weeks. About halfway through the pregnancy, the couple continued prenatal care with their regular obstetrician for weekly sonograms and stress tests. The pregnancy was going well, but Kati was not feeling kicks and began to retain fluid. At her 32-week appointment, Kati was measuring at 47 weeks because the baby was not swallowing the amniotic fluid. Kati was admitted to the hospital and Haylee was born at 33 weeks and 3 days.
Haylee was immediately rushed to the NICU and intubated. “She was floppy. She wasn’t moving. She wasn’t breathing on her own,” Kati recalls of the whirlwind surrounding Haylee’s birth. Doctors were not sure what was going on and thought maybe the cause was neurological or muscular. In light of Jaxon experiencing similar symptoms at birth, doctors ordered genetic testing within days.
At 10 days old, Haylee was transported to the NICU at Children’s Mercy Hospital in Kansas City. In addition to her underlying condition, Haylee also faced complications due to being born prematurely. She had trouble breathing so she was intubated for the first seven weeks of her life. Doctors also placed an NG-tube because she was having trouble with swallowing and aspiration.
Doctors repeatedly told Kati and Derek that Haylee needed a tracheostomy. “We felt like they never gave her a chance to show what she could do,” Kati shares.
Around 6 weeks old, genetic testing revealed that Haylee has RYR-1, also known as Central Core Disease, which means that her core muscles are weak because of calcium not being properly released from her muscles. Big brother Jaxon most likely had the same diagnosis, but doctors didn’t know at the time.
When Haylee was born, she could only move her fingers and toes. “It’s like her muscles have to fight against gravity,” Kati explains. “When we move, we don’t even think about it. But gravity is pushing her down and her muscles aren’t strong enough.” At four months old, Haylee had a G-tube placed because her muscles are too weak to swallow.
Haylee was extubated at 7 weeks old, but five days later, she was reintubated for about a week. She was extubated again with the goal of moving to a nasal cannula for oxygen. Doctors slowly weaned her down to two liters of oxygen and the family thought Haylee was ready to go home. Doctors said once again that Haylee needed a trach because she needed humidified air for secretions to avoid choking.
Kati connected with a mom on Facebook who told her about a type of BiPAP called a Wisp mask that might help. Kati and Derek brought the mask to the NICU for Haylee to try, but doctors said it was too big for babies and would cause skin breakdown on her nose. Haylee’s parents continued to advocate for a month. Finally, the doctors let Haylee try the Wisp mask and it was successful. The hospital had never used the mask in this setting and Haylee’s parents found themselves teaching nurses and respiratory therapists how to use it. At first Haylee wore the mask all day then progressed to only while she was sleeping and using the nasal cannula while awake.
The family spent 8 months in the NICU waiting for Haylee to get bigger, stronger and to be able to breathe without a trach. It was finally happening thanks to Kati and Derek’s advocacy. “Her NICU stay was by far the hardest thing we have gone through. We fought for her life and fought the doctors to fight for her life,” Kati shares.
In November, Haylee was finally ready to come home. Haylee flourished at home. Three months later, she no longer needed to use the nasal cannula for oxygen and only uses a BiPAP while she sleeps. “She has come an incredibly long way,” Kati says of her daughter.
Halyee started Physical and Occupational Therapies through Early Intervention at a young age. At 15 months, the family celebrated as Haylee reached a significant milestone and sat unassisted. Haylee attends a school where receives PT, OT, Speech and swimming therapies. She started in the baby class, progressed to the toddler class, and is now in preschool two days a week.
Haylee has a stander and wears AFO’s decorated with ice cream, donuts, and unicorns, which reflects her sweet personality perfectly. She uses a Kid Walk gait trainer at school and is expecting to get one at home soon.
Haylee is a talkative three-year-old who loves princesses, yet also likes playing Mario and Pokemon with her big brother, Kaden. Hayee’s parents advocated to give her a chance to show what she can do and she has shown strength and determination to live her best life.
Time to get loud shouters!
Throughout the month of July we will be shouting loud for Haylee!
So click here to shop now where every purchase in July will be used to help Haylee have safe and restful sleep through the purchase of a Sleep Safe bed.
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