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Meet Kayleigh

Two-year-old Kayleigh Hope runs through her Baltimore City house laughing with glee. It is fitting that Kayleigh’s middle name is Hope because that is exactly what her family had to have for the last two years.

On January 1, 2014, Kayleigh was born at Mercy Medical Center weighing just 11.64 ounces. She is the smallest surviving baby born in Maryland.

Kayleigh’s mom, Nicole, first learned that something might be wrong during the twenty-third week of her pregnancy. After several possible diagnoses, including Down Syndrome and Spina Bidfa, it was determined that Kayleigh was experiencing intrauterine growth restriction. Due to this, she didn’t have the space she needed to grow and was getting only a tiny amount of blood, nutrients and oxygen.

The doctors prepared Nicole and her husband Jacob for the worst, telling them Kayleigh may not survive. Jacob asked if they could go visit the NICU. The doctors cautioned against it saying “‘you won’t make it there,'” Jacob said. “But I thought where there is life there is hope.”

At 26 weeks, Nicole experienced preeclampsia and kidney and liver failure. Doctors made the decision that if they didn’t deliver Kayleigh at that point, Nicole’s life would be in danger.

Jacob retells the story of Kayleigh’s birth. When she was delivered by C-section, she entered the world lifeless. Doctors attempted to intubate her. After working minutes with no success, a nurse practitioner offered to try and within seconds she had successfully inserted the tube and Kayleigh let out her first cry. “Everyone in the room could hear it,” said Jacob.

From there, Kayleigh began a roller coast ride of highs and lows. Nicole shares books of photographs that chronicle Kayleigh’s journey. Viewing the books, you get a sense of how small Kayleigh was, barely the size of Nicole’s hand and what her life was like constantly connected to tubes, sometimes too fragile for Nicole or Jacob to even touch her.

In April, doctors at Mercy suggested that Kayleigh have a tracheostomy. Other doctors thought that she was still too frail and would not survive the surgery. Kayleigh was transported to the University of Maryland for the surgery, coding three times in the ambulance. When she arrived at her the hospital, doctors were hesitant to even attempt the procedure. Jacob made the decision to proceed with the surgery. “Let’s die trying,” he told doctors.

Kayleigh made it through the procedure and several others. She moved from the University of Maryland to Mt. Washington Pediatric Hospital for an additional three months.

On October 29, 2014, Kayleigh was able to leave the hospital and be in her home for the first time in her life. She came home ventilator dependent, on oxygen, had a feeding tube and on 21 medications.

When Kayleigh turned one, she was enrolled in the Rare and Expensive Case Management (REM) Program and assigned to The Coordinating Center for coordination services. Nicole said The Center helped the family in more ways than one and is grateful for The Center’s support and guidance. “It helped me be a better mother,” said Nicole.

Originally, Kayleigh was receiving 8 hours of nursing care. The Center helped the family get more nursing support. “Without the nursing, she wouldn’t be where she is today. “The nurses taught me what to do and how to care for Kayleigh,” Nicole said.

In September 2015, Kayleigh was taken off of the ventilator, at least four years earlier than doctors predicted. She is currently enrolled in a feeding program and has begun eating solid foods. Doctors predict that by next summer, she will be able to breath on her own and have her trach removed.

Kayleigh has made strides, but it is still a lot of work. Her mom says she spends a lot of time at doctors and therapists. Nicole runs through her schedule for a week, which consists of speech therapy, occupational therapy, a developmental assessment, physical therapy and feeding classes.

If Nicole and Jacob had listened to the doctors, they would have never believed that Kayleigh would be here today and making progress. “I know it is their job to prepare you for the worst, but it was hard to hear everything they told us,” Jacob said. “We are here today because of faith and hope.”