Luann Jones

“(Peggy) helped me become confident in my ability to care for Drew and helped me feel like his mother. This was powerful because in the very chaotic NICU environment, most parents feel completely helpless and out of control.”

Tell us a little about yourself and your story.

My NICU story starts May 11, 1989, when my son Drew was born at 29 weeks gestation weighing just 2 lb 2oz.  I delivered him at the University of Arkansas for Medical Sciences (UAMS) via emergency C-section due to pre-eclampsia after being on bed rest for about a week.  I was a young 18-year-old mom who had married my high-school sweetheart right after graduation.  I was in my first semester of college when I found out we were expecting, and I had no reason to anticipate that it would be anything other than a normal, healthy pregnancy.  My pregnancy issues and our resulting premature delivery were a huge surprise and needless to say one of the scariest experiences of our lives. I'll never forget the moment that Dr. Bonnie Taylor came to my bedside in the recovery room to tell me and my husband that Drew had a 50/50 chance at survival. 

We had no idea what to expect and feared the worst. Drew was several days old before I was finally stable enough to go to the UAMS NICU to see him for the first time.  He was so tiny with his transparent skin and so many tubes and wires. It was day 5 that Drew was transferred to the NICU at Arkansas Children's Hospital (ACH) where he went on to have a 3-month NICU stay. 

His premature lungs caused the most problems and after multiple failed extubation attempts he finally came off the ventilator around 2 months of age. When he was finally discharged home he required nasal cannula oxygen, breathing treatments, multiple medications, and special high-calorie formula for poor weight gain. 

After being home several months he was back on oral-gastric tube (OGT) feedings at night for failure to thrive related to severe reflux and nearly had a GT placed. Instead, we were allowed to do OGT feeds at home to supplement his bottle feedings and eventually he started to grow. Needless to say his first year at home was full of challenges including 3 additional hospitalizations.  Our experience was nothing like I had expected it to be, but thankfully we had a very supportive family and we continued to receive wonderful care from the team at ACH. 

While we were in the NICU, I spent countless hours at Drew's bedside and became very close to his primary RN Peggy Ables. She was simply amazing, and I will be forever grateful to her for the care she gave to all of us, not just Drew.  She helped me become confident in my ability to care for Drew and helped me feel like his mother.  This was powerful because in the very chaotic NICU environment most parents feel completely helpless and out of control.  It was Peggy and Dr. Billy Thomas who planted a seed when they suggested that just maybe one day I would go back to school and become a NICU nurse. 

Fast forward to 1994, which is when I graduated from the BSN program at UAMS.  While in my senior year of nursing school I worked as a Student Nurse Assistant in the ACH NICU.  After a year of adult ICU nursing, in 1995 I got my dream job and became a bedside RN in the ACH NICU. I was finally able to pay it forward by helping support other families through their NICU journey.  I eventually went on to graduate school and was a Neonatal Nurse Practitioner (NNP) in the ACH NICU for 14 years. 

My final 10 years at ACH was as the Director of Neonatal Services.  With each role transition, I was able to expand my ability to support NICU families in greater ways. Establishing the NICU Family Advisory Board (FAB), implementing the March of Dimes Family Support Program, and implementing bedside cameras are several of the accomplishments I'm most proud of. 

It was in 2015 while I was the NICU Director when I first met the Staley family.  Their son Freeman was a long-term patient in the NICU before being discharged home and then getting readmitted to the PICU at ACH.  Misti Staley and I went on to cross paths again when she joined the PICU Family Advisory Board.  I knew Misti to be a fierce and passionate advocate for Freeman throughout his life, and she continued to be an advocate for other patients and families through her work on the FAB.  It did not come as a surprise when Misti contacted me one day out of the blue.  She told me about FreeArm, an idea she and her husband came up with as a result of Freeman's tube feeding journey.  Misti asked me if the ACH NICU would be able to pilot the FreeArm, and I knew right away that I needed to find a way to help. 

Although there were some hurdles to overcome, the NICU eventually became a pilot site for an earlier version of the FreeArm.  The same NICU staff that had cared for Freeman, were able to give input about the FreeArm which contributed to the development process. Now the FreeArm is being routinely used in NICUs across the country and world-wide.  NICU RNs love the FreeArm because it provides a safer way to administer tube feedings. It frees up hands resulting in improved nursing workflow. Fewer spilled feedings reduces waste and ultimately improves patient nutrition and growth.  

Since November 2022, I have been a part of the AngelEye Health team as the Director of Customer Success and Project Management.  AngelEye Health and I share the same passion for supporting families throughout their NICU journey and their transition to home.  One of the things I love most about FreeArm is that just like AngelEye Health's technology, the FreeArm can transition home with the NICU family.  This continuity of care is especially important for families going home with babies with complex needs such as tube feedings.  The safety, improved workflow, and flexibility that FreeArm provides in the NICU setting are also benefits for parents and caregivers at home. 

The story behind FreeArm is a remarkable full-circle story and is a testament to the impact Freeman made despite his short life with us here on earth. I am honored to have played a very tiny part in that story along with the NICU team at ACH.  The FreeArm story is also a great example of how each of us can have defining moments that go on to completely change the trajectory of our lives.  For me, the work I do always comes back to my "why" and is about continuing what Peggy started all those years ago by supporting me as a NICU mom. You'll always find me trying to pay it forward, working to improve NICU care and outcomes, and advocating for patient and family-centered care.