The "Grateful List"
During the 10 weeks our son Max spent in the NICU at Riley Hospital for Children at IU Health, my husband Ryan and I kept a “Grateful List.” At the end of each day, we would choose one thing we were grateful for. It helped us stay positive while enduring so much fear and worry on a daily basis.
Some days we were thankful for particular friends and family members, or the fact that we got to hold Max or hear him cry for the first time. But an overwhelming number of the items on our “Grateful List” are staff members at Riley:
- Pediatric Resident Lara Darling, M.D., who cared so much about Max;
- NICU Nurse Dana Realey, RN, who was our therapist and cheerleader;
- Music Therapist Ann Hannan, who played guitar and sang songs for Max;
- Donna Olsen, MPH, the NICU financial resource coordinator who taught us the ins and outs of Medicaid and insurance coverage;
- Pediatric Nephrologist Amy Wilson, M.D., who earned our complete trust;
- And Nephrology fellow Anne Kouri, M.D., who helped us believe—for the first time—that Max would be okay. (She told us she knew he would do well because we are good parents.)
Max was born on August 23, 2014, at 40 weeks and 3 days. I had an ideal pregnancy and a perfect delivery; yet immediately after he was born, we knew something wasn't right. During those first precious moments holding him, he never took a deep breath or let out that big, newborn cry.
We soon learned that Max was born with Posterior Urethral Valves, a condition that prevented him from being able to secrete urine in utero. The condition was fixable with a quick surgery (a transurethral resection of posterior urethral valves) and we were thankful for the expert care of Riley Pediatric Urologist Benjamin Whittam, M.D., and Urology Fellow Alison Keenan, M.D. Unfortunately, significant damage had already taken place in the form of underdeveloped lungs, a compromised bladder and non-functioning kidneys.
We were overjoyed to watch our brave little Max battle through the challenges with his lungs and eventually breathe on his own after three weeks at Riley. The big challenge that remained was his lack of kidney function. He began receiving daily dialysis treatments at 10 days old. We were shocked and overwhelmed to learn that he will need to continue dialysis until he grows large enough to receive a kidney transplant (about 26 pounds). Still, we were grateful to learn that there was a path home for Max.
Pediatric Dialysis Nurse Suzie Hedrick and the Riley dialysis team taught us how to take care of Max at home, and sent us on our way with our dialysis machine and a car full of medical supplies.
Now that we've been home for several months, the "Grateful List” serves as a special reminder of how far we've come and all the people at Riley who helped us get here.
Together, as a team, the medical staff at Riley kept us going for the 69 days we “lived” in the NICU. But more importantly, together, as a team, they saved our son's life.
comments powered by Disqus