Each month at St. Louis Children’s Hospital, a team reviews a number of nominations for a nursing award called the Daisy Award. Doctors or nurses typically nominate their coworkers for this recognition, but one recent nomination came from a parent. The words Colleen Miller wrote so beautifully illustrate the love and care the staff at St. Louis Children’s Hospital have for each patient, and the unparalleled love and dedication the staff see in the families who entrust them with their most precious gifts. With Mrs. Miller’s permission, we are sharing her letter of nomination.
I am a nurse. A proud graduate of the old Jewish Hospital School of Nursing. I have been on the WashU Med Center campus for over 21 years. I have worked with adults in a variety of settings and seen many things over the years…some tragic and some wonderful. I have cracked ribs doing CPR, I have watched people die and watched people survive.
During all my years as a nurse I have never witnessed a more amazing group of dedicated professionals than those in the CICU and 7W.
Our only child was born via IVF in 2010. She was a much prayed for blessing who lit up our lives. At the age of 6 months, two days before Christmas, a fever and wet cough led to a chest X-ray in the ER. Our lives changed forever when we were told Layla’s heart was significantly enlarged. I worked cardiac, I knew what dilated cardiomyopathy was.
She was immediately taken to the CICU. When I handed her over to the nurse, I knew those hands were the best I could have placed her in. This was the night we first met Dr. Allan Doctor. His calm demeanor and thorough explanations made this awful experience the best it could have been.
Layla spent her first Christmas in the CICU. Her first glimpse of Santa was from her hospital crib. She was anointed on Christmas Day by Fr. Gray. By New Years we were out on 7W digesting all that was happening and all that was to come. 11 days after her admit, we blessedly took her home.
Over the years Layla had a number of stays in those two units. Each admit was difficult but all the while we knew we were blessed to have these wonderful people caring for our most precious gift.
By August of this year, at the age of 4, Layla’s heart was in need of more advanced treatment.
The time had come that had always loomed over our heads.
The time we feared the most.
The time we knew, that from here on out, my husband and I had zero control of what lay ahead.
Layla went into cardiac arrest during her cardiac cath on August 27th. Despite the amazing efforts of everyone, Layla passed away 11 days later. This time her 11 day admit ended with her going to her forever home.
She left this world the same way she came in…myself, my husband, a doctor and a nurse in the room.
Instead of the utter joy and elation when she arrived, this event was full of unbelievable grief and despair.
There are many things I will remember and learned from this last visit….
I learned that when Dr. Canter rolls his eyes at you it means he likes you. I must be his favorite person.
I learned that many of the doctors watch the monitors in real time from home in the middle of the night and call with concerns.
I will remember the nurse who spent time with Dada and grandma washing Layla’s hair after the EEG machine was removed.
I will remember the nurse who put a bow in her hair. No one could wear a bow quite like Layla.
I will remember Mary Mehegan, RN, being in the room when we were told the damage Layla’s brain had suffered was too much…that our hopes to be listed for a transplant were gone….that we would not be taking our little girl home. She was crying along with us.
Mostly I will remember the final day. I will remember Dr. Doctor coming in on his day off, a Sunday morning, before he took his own children to Sunday school to be with us when we stopped the meds and pulled the ventilator….knowing it was like coming full circle as he was there the very first night of this journey.
I will remember Alli. Oh Alli, such a difference she made. She was only with us the final two days but she was placed there for a reason. Words cannot express the compassion she showed.
Alli stopped the IV meds, Alli pulled the breathing tube and Alli cried with us like she had known Layla forever. Like she knew her as the spunky smiling girl we did. She knew how much Layla was loved and how she will be missed so terribly.
At a moment in time that will be forever ingrained in our hearts…Alli will be there.
I had mentioned in passing at one point that Layla always preferred to be on my left hip and over my left shoulder. When she took her from me for the last time, Alli said “She liked the left shoulder, correct?” She placed my most precious gift over her left shoulder and walked her down to the OR for organ harvesting.
Watching Alli walk away with my sleeping doll over her left shoulder, snuggled in a blanket was a moment that cannot be described. Unbearable grief yet blessed and full of gratitude.
This was not how Layla’s story was supposed to end, but as usual, she had her own plans. Her time here was brief, yet poignant.
She was so loved by so many.
She lit up the room with her smile.
She taught many lessons to all who met her…whether to be a better parent, to not sweat the small stuff, to appreciate every little accomplishment or to fight like crazy with a smile on your face.
Some people live 80 years and don’t make an impact. Layla did it in just 4.
For us… Alli did it in 2 days. Our gratitude is unending. Thank you Alli, from the bottom of our broken hearts. You made a difference. You made the end of this journey a little more bearable…a profound accomplishment by simple gestures that will stay with my family forever. You should be commended for your dedication and amazing care during the most difficult time of our lives. You will never be forgotten.
“Hope anchors the soul.” Hebrews 6:19