Tell us a little bit about yourself and your family
My name is Kelly Walker, and I am currently serving on the Madelyn’s Fund board for Community Outreach. I am a Pilates trainer at Iron Butterfly Pilates Studio in Atherton Lofts in the South End. I love my job!!!
I have been married almost 30 years to my incredibly supportive husband, Kelly (yes we have the same name). We have a son, 28, who was born premature and was my first introduction to the NICU. My daughter came 3 years later and also was premature with considerably more complications, and was also in the NICU in Boston.
How long was your NICU stay?
My son was born at 32 weeks, 4 lbs 8 oz, and stayed in the NICU 21 days. My daughter born at 35 weeks, at her tiniest 2 lbs 9 oz, suffering from IUGR, was in the NICU the first time 21days. She developed sepsis at 5 weeks, and was back in the NICU for almost 3 more weeks.
What were the challenges you faced during your time in the NICU? After?
My son required a CPAP for fluid in his lungs at birth. He was able to come off oxygen in only 2 days. His stay was more for eating and thermal support. My daughter was mainly for thermal support in her first stay. Her second stay was for sepsis, which was scarier than the prematurity. She was unstable for 3 days and at one point was being considered for the transplant list, as her kidneys were shutting down. Her stay resulted in a lot of ups and downs as she battled through the illness. She eventually came home with no complications from the illness. At 3 months we first noticed the signs of a possible stroke. We immediately started physical therapy. As she developed, it was obvious the lack of development, and so more therapies were started. It was explained to me that the brain can rewire itself from an injury up to age 12, so we did everything possible. By 2, she was in physical therapy, occupational, speech & rehabilitation at a stroke center. At 3, she went into a developmental preschool for both exceptional children, (more than 13 month delay in any one area), and peer models. Once she started school, K-12, we used the public system with their programs for accommodations, to empower her to do well, including 6 hours additional tutoring outside of school. She never complained, or stopped trying, her motivation & determination is what drove her to be successful.
If applicable, how is your child/children doing today?
My son works for Electronic Arts games in Austin, TX. He is lead animator for their Simpson’s video game. He has had no issues with his prematurity. My daughter, turning 26 on January 9, graduated from UNCC in 2016 and held a leadership position in her sorority. She also worked part time for the YMCA in childcare. She currently works in hotel hospitality here in Charlotte. She has no issues from her prematurity, stroke or sepsis. She is truly a miracle! I should mention she also has completed 7 half marathons, and is currently training for her eighth. We have run all of them together! After I joined Madelyn’s Fund, we ran our 6 & 7 in October & November of this year. It has made me realize how far we have come. Everyday becomes normal, which is great, but it is ok to remember how far we have come and how lucky we are! Thank you Rachel & Andy for allowing me to give back and remember all the amazing people who have helped me and my family in our time of need.
What advice can you give to other NICU Moms?
Be kind to yourself. There can be a tremendous feeling of guilt, but guilt does not help nor change the situation, it only complicates it. You did nothing to cause this nor can you do anything to change it. Forgive yourself and focus on hope. Take care of yourself. You need to keep yourself healthy so you can be there for your child after they come home. I did not do this and ended up so sick, when my daughter could be discharged they would not release her due to my illness. She had to stay an extra 3 days. Finally, manage your stress. It is so hard to hold it all in but it is ok to ask for help. This is the hardest aspect and everyone deals with stress differently. Finding what helps you will benefit you if your child requires additional care after their discharge. I found journaling worked for me. Looking back now on some of my entries is both hard and uplifting at the same time. You may decide to never read it again. It is such a personal journey but just remember there are no stop signs on this journey. Maybe a yield or wrong way, but never a stop. So just keep moving forward and there will be hope. I wish you well on your journey.
How has Madelyn’s Fund helped you?
By serving on the Board of Madelyn’s Fund, it allows me to give back to families who are finding themselves in the same situation I was in 26 years ago. I know family and friends who have never found themselves in a similar situation and do not always know what to say about my experience and are afraid they may say the wrong thing. Even I struggle with the words sometimes, but I can offer my experience and that helps with understanding. It is a club no one ever wants to be a part of, but once you are a member, your world and the way your perceive the world changes forever. Only a NICU family understands that.