She has proven that given any obstacle, she will triumph.

Kayla Hurse, Rory's mom

“Rory’s warrior spirit is not only a testament to how fearfully and wonderfully God made her, but also how the community of love and care, cultivated by her biological and Bronson Children’s Hospital NICU families, empowered her to fight for her healing.”

We knew that a NICU stay would be inevitable for Rory. At 21 weeks, we learned that an incompetent cervix and preterm premature rupture of membranes were jeopardizing an, otherwise, healthy pregnancy. Fast forward two weeks and unexpected bleeding, which was later determined a placental abruption, and contractions led us to our local emergency room and subsequently, Bronson Methodist Hospital. From that moment on, we were informed of all of the odds that Rory would be up against and the uphill battle that overcoming them would prove to be. We were also informed that the best possible outcome would be to remain in the hospital and attempt to hold the pregnancy until 30 weeks. However, given the condition of our situation, our doctor warned that the likelihood of holding the pregnancy past the end of the week was slim to none. He was terribly accurate.

Aurora was born at 24 weeks gestation on Friday, September 23, 2016 — just five days after being admitted to the hospital. She weighed a mere one pound eight ounces, deeming her a micro preemie and was immediately intubated, as her lungs were undeveloped. Her arrival was frighteningly beautiful. She embodied simultaneously the fragility of life and an audacious will to live. During Rory’s 290 day stay in Bronson Children’s Hospital’s Neonatal Intensive Care Unit, she was confronted with many obstacles. Routine blood transfusions were necessary to aid with her anemia. At only a week old, she fought through her first bout of pneumonia; her second bout was at five months old. She also fought off a few bacterial infections in the months that followed. No matter the obstacle she encountered, she fiercely persisted.

The issues impacting Rory’s respiratory system —respiratory distress syndrome (RDS), bronchopulmonary dysplasia (BPD), patent ductus arteriosus (PDA), and laryngomalacia — proved to be the most relentless. She consistently struggled with every attempt to extubate her. In effort to combat the incessant re-intubations and complications from prolonged intubation, she later underwent a PDA ligation, tracheostomy tube placement, and gastrostomy tube placement. From then on, Rory truly blossomed. We were finally able to see her darling, smiling face unaccompanied by a breathing tube and layers of tape. She was finally able to engage and interact with us without the interference of a sedative. She also worked tirelessly to conquer oral aversion and wean off the ventilator, while we anxiously awaited home nursing — and, ultimately, a discharge date. After several, seemingly endless months, we received the news that we would be saying goodbye to what had become our second home. In a teary-eyed farewell, Rory became a NICU graduate on July 11, 2017.

Today, Rory is a vibrant, inquisitive, fun-loving two-and-a-half year old. Aside from her tracheostomy tube, there are no readily identifiable remnants that bear witness to all that she has faced. The surgical battle scars are always concealed by her clothing. Her gastrostomy tube still lies beneath her onesie, however, it is no longer in use. She is no longer confined to a ventilator for twelve hours of the day either. Her ongoing battle with an elliptically shaped cricoid cartilage has impeded the removal of her trach and consequently, her ability to speak. However, she has discovered how to force air around her trach, which results in audible sound reminiscent of a squeak. Naturally, she takes advantage of any opportunity to exercise this new found skill; she loves to hum her alphabet, numbers and favorite songs and express her excitement, frustration, or any emotion in between. It has been awe-inspiring to witness her resilience. Rory’s warrior spirit is not only a testament to how fearfully and wonderfully God made her, but also how the community of love and care, cultivated by her biological and Bronson Children’s Hospital NICU families, empowered her to fight for her healing. Although the denouement of Rory’s story remains unwritten, she has proven that given any obstacle, she will triumph.

 

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