700 Children's® – A Blog by Pediatric Experts

Gillian's Journey: One Micro-Preemie's Story of Hope

Apr 16, 2014

This story was shared by a Justice associate about her journey with Nationwide Children’s in support of the Give Hope Campaign.

Eight years ago, Robyn and her husband, Jason, were delighted with the news of her pregnancy. The delivery date seemed most appropriate for Ohio, springtime: rebirth, rejuvenation, renewal, resurrection, and regrowth. Neither anticipated their drive to the hospital to be in the dead of winter. At 24 weeks, just six-months pregnant, Robyn went into labor giving birth to baby Gillian at only 1 pound, 8 ounces.

Robyn and Jason’s first look at Gillian brought joy. Even though she was hooked to a great deal of machines, had translucent skin, and eyes fused shut, she looked like a baby with arms, legs, fingers, and toes; just very tiny. Unable to wrap her mind around how tiny, Robyn pulled out a purple Sharpie pen from her purse and laid it next to her daughter. The result was a bit shocking: Gillian was the size of a Sharpie.

From that point Robyn waged a battle—it was Gillian versus the Sharpie. Growing stronger every day, Gillian was winning. One week after her birth, the proud parents were able to hold their daughter for the first time using a method called Kangaroo care.

Gillian had a condition known as a PDA  which causes abnormal blood flow through the heart. She was given a trial medication to correct the issue that was ultimately unsuccessful. This led her cardiologist to perform a bedside heart surgery called a PDA ligation. The surgery was successful; Gillian continued to grow and was winning the Sharpie battle.

At close to three pounds, doctors recommended she be dressed and handled like a traditional newborn, which was important for her development. With breathing and feeding support still necessary, the next hurdles were to wean Gillian off the ventilator to a CPAP machine and start bottle feeds. Once she began to bottle feed Gillian struggled to keep food in her system. A swallow study showed there were no mechanical or neurological reasons for the issue. By thickening Gillian’s milk, they were able to alleviate any additional issues.

Prior to discharge Gillian was diagnosed with Bronchopulmonary Dysplasia. While able to head home, she required oxygen for the next six months along with multiple therapy sessions per week. Her treatment and progress were carefully monitored so findings could help other preemie babies.

Gillian grew into a chubby, happy baby. At the age of two, she needed ear tubes and developed RSV, which can be deadly for a preemie with underdeveloped lungs. Rushed to the ER and unable to breathe on her own, she was placed on a ventilator. Gillian was admitted to the PICU.  After four weeks she fought off the virus. But there was more, Gillian struggled to get back to herself and suffered another setback, spending several weeks in rehabilitation.

This whole experience felt like one step forward and two steps back, an exhausting, emotional roller coaster. After a successful rehab stay, Gillian received the best birthday gift ever: at the age of three, Gillian was released from all additional care!

Today, as an eight-year-old little girl, Gillian’s story serves as a reminder of the the incredible care provided through Nationwide Children’s Hospital. Sometimes the tiniest feet have the hardest journey—yet are capable of taking the biggest steps. Oh, and that purple Sharpie? Yeah, Gillian totally won!

We thank Robyn for her courage in sharing such an emotional and personal story to support the Give Hope campaign with Nationwide Children’s Hospital & Justice and Brothers stores. 

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700 Children’s® features the most current pediatric health care information and research from our pediatric experts – physicians and specialists who have seen it all. Many of them are parents and bring a special understanding to what our patients and families experience. If you have a child – or care for a child – 700 Children’s was created especially for you.