Lori Irvin, BSN, RN, CPN, is a mother of three children: Shea, 21, Lee, 13 and Rosemary, 12. Rosemary was born with a congenital heart disease, Hypoplastic Left Heart Syndrome (HLHS), causing her to spend nearly 15 months in and out of the hospital during her first years of life. Six of those months were spent as an in-patient in the CICU/HKU here at Children’s National Hospital, where at one point, her condition got so bad that Lori and her family were preparing to put Rosemary on hospice care. It was during this time frame that Lori, who had previously earned her bachelor’s degree in rehabilitation and worked as a special education teacher, decided to further pursue a career in nursing.
“Once I realized the level of care that would be necessary to keep Rosemary alive, I decided to get back into nursing,” explains Lori. “I wanted to be able to better care for her.” In January 2011, Lori enrolled in the College of Southern Maryland’s nursing program and received her Associates Degree in Nursing. She worked as an adult telemetry nurse for three years while pursuing her BSN degree, which she received from Frostburg State University in 2016. “Ever since my daughter was a patient here, I’ve wanted to be a nurse at Children’s. Being here has always been in my heart,” she says. In 2017, Lori learned of an open position on the Intestinal Rehabilitation Unit (IRU), and knew that she had to apply. “At the time, I knew very little about metabolic disorders. I did some investigating and became increasingly interested,” she says. “I’ve been in the IRU since coming to Children’s, so its home!”
In her role, Lori cares for patients in our IRU. “The majority of kids on our unit are long stayers, they’re here for nutritional optimization because they have intestinal, liver or digestive issues,” Lori explains. In addition to caring for patients, Lori works closely with families to provide education and support. “Parent education is a huge component of care on our unit. These kids can be fairly complex, so teaching parents how to manage them at home can make or break their success with homecare. They should honestly be given an honorary RN degree before they leave!”
Lori’s experience with her own child having a complex medical condition has uniquely positioned her to be able to support the families of the patients that she cares for. “We take care of a wide variety of specialized populations of children that have a heightened level of medical complexity. I try to be mindful that anytime there is a child with a chronic condition, there is a parent with an equally complex history of caring for this fragile child,” she says. “I am constantly reminding myself to slow down, not just to be safe at the bedside, but also to find those small pockets of time where I can find an opportunity to lift the spirit of a patient or a parent.”
In addition to caring for our patients and families at Children’s National, Lori also acts as an advocate for children with congenital heart disease like her daughter. Every year, she goes to Capitol Hill to lobby for increased funding for research to improve the outcomes for patients born with congenital heart disease. “My hope is in research. I feel like we’re on the cusp of something big and I hope that in my daughter’s lifetime there will be more options, other than transplant, that will allow her to live the long and healthy life she deserves,” she explains. When she isn’t lobbying for children with HLHS, Lori also works as a respite provider for military families that have children with disabilities and as a parish nurse at Huntingtown United Methodist Church. Additionally, she recently completed her Clinical Advancement Program (level 2) successfully.Giving back to the community is a priority for Lori, and it’s a big part of why she loves working at Children’s National. “I try to be the most positive light when I’m here. I feel like this is where I’m at my best, lifting parents out a mindset of despair, mostly because I can identify with where they are,” Lori explains. “After watching the impeccable care that the doctors and nurses in the CICU/HKU provided to my daughter, I was so inspired to become a nurse and give back to the place that has given me a million reasons to be thankful every day. This is where I’ve always wanted to be.”