James's Story (Lincoln)

James Kirk (Lincoln)

James Kirk is the only child of Gabriela and Ryan Kirk, and this is his journey. We found out that we were expecting in the fall of 2011. After a few months we came to learn that there was a complication with the pregnancy that led to Gabby being admitted to OSF in Peoria for bedrest to prolong the pregnancy.

After nearly two weeks of medical efforts, James was born prematurely on February 9th at twenty-three weeks and six days weighing only 1 lbs. and 2 oz. He was taken straight to the Neonatal Intensive Care Unit (NICU) at the OSF Children’s Hospital, where he would spend the next 4 months.

During James’ time in the NICU he had numerous tests and procedures. Starting with a surgery to close a defect in his heart, even though he was only a few weeks old. While the surgery was a success, James did have some nerve damage that led to paralysis to his left vocal cord. The vocal cord paralysis brought additional challenges: low tone and volume to his voice as well as a risk of aspiration. Through years of speech and feeding therapy, along with a few vocal cord injections, James’ voice has gotten clear and he has been able to pass the swallow study.

In the NICU we also learned that James is missing the septum pellucidum. It is a membrane that separates the frontal horn of the left and right lateral ventricles of the brain. To compensate for this, James has been able to receive physical therapies to strengthen his muscles and coordination at Easter Seals, OSF, Methodist, and school.

Thanks to all of the hard work from the doctors, nurses, and staff at the Children’s Hospital, James was able to come home with us near his original due date in June 2012. Post-discharge from the NICU, the Children’s Hospital continued supporting James through his first few years at home with services and support.

One of the major ways we received continued support from the Children’s Hospital was with allergy testing for James. When taking milk or formula, James would frequently struggle to keep the food down. Thanks to the allergy panel, we found out that he had a lot of food allergies. To compensate for this James started on a special diet through a gastronomy tube to help him eat and gain weight.

We’ve met and are grateful for all the healthcare providers who have been involved in James’s care. We’ll never forget their dedication to be the voice of these little ones in their care in the NICU. We became especially close with four NICU nurses. We would like to send our heartfelt thank you to them: Laura, Emma, Robyn and Lora.

James has been attending Lincoln Elementary school since pre-K. He enjoys being with his friends and teachers. He loves reading so much! James’ current favorite books are the InvestiGators, Dog-Man, and the Pokemon Adventure graphic novels. James has a great sense of humor and loves to make everyone laugh. James recently joined Morton Red Wings bowling team and participated in his first Special Olympics tournament taking home 6th place.

Thank you again to everyone who has helped James over the years. We couldn’t be here today without you!