We went out to eat for dinner last night, and a flood of memories came to me.  As I watched Madeline eat spoonfulls of macaroni and cheese and two helpings of salad with gobs of ranch dressing and Eli move croutons around the table like cars, taste and swallow black olives and shovel fistfulls of mac-and-cheese in his mouth, I realized how far we've come.  

 

From eating at restaurants with our ambulatory feeding pump that gave liquid nourishment directly into Madeline's stomach while she looked at and sometimes touched the food we were playing with in front of her to her actually eating . . .wow!  This result of our feeding journey did not just happen with time; it was only after deliberate individual and group feeding therapy every week.  It was more than therapy; it was the FANTASTIC people who carried us through those frustrating and terrifying months. Our feeding team at LEAD, Melissa, Jenny, Jill and Erin, encouraged, hugged us through and taught us how to cope with a child who was literally failing to thrive.  

 

This brings me to our topic - relationships.  The people of Le Bonheur have been such friends to us.  I say "us" because our whole family has been brought under their wings, not just Madeline.  Before family-centered care was an intentional goal, there were people already doing it - because of who they are.  A great example of this is a nurse we had in the ICU, Becca.  She was the first person we met after the ER.  She was so forthcoming with information and explained everything.  Becca encouraged us to hold Madeline, got a rocking chair for me to nurse, answered every question we had, and amidst all the charting and care she gave directly to Madeline, she never appeared too busy to talk or soothe our concerns. A few nights later we were back in the ICU after Madeline had a heart cath.  Becca had arranged for Madeline to be her patient that night.  And boy, what a night - it was the worst night of the 15 days we were there.  It was then that we were told definitively what was going on inside Madeline's tiny little body, and Becca was there for us that painful night. She is now in Nashville and just commented on this blog a few days ago. . . a nurse who remembers a patient after three years genuinely loves her job, loves the kids and families that she meets and devotes a part of herself to helping others outside of herself.

 

There are so many people like Becca who have impacted our lives:  

Amy in the ER who said, "I think we need a cardiac consult"

 

Kay from the Pedi-flight team who got an IV in Madeline beside a mom who was so scared her daughter would pass out when she cried (which she did and Kay handled it so well and the IV lasted all 15 days!)

 

Dr. Wetzel who did an echo himself on Madeline at 10 p.m. in the ER

 

Dr. Joel Lutterman who was so kind to pull me in the hallway so we wouldn't disturb her as she slept while he explained with hand drawn pictures and all what was about to happen

 

Dean who took Madeline back to have a heart cath in his big loving arms

 

Amberlee, Stacey, Allison, Nikki, Charlotte, Kristy, Dana, Suzy, Gwen, Lindsey, Linda, Hilary, Sonya, and all the fabulous nurses on 7West whose care for Madeline was extraordinary and love for us was so needed

 

Dr. Guillory, Joe, Whitney, Stephen, Michelle, Jenny and Sarah in the ICU

 

Amy, our good friend, and X-Ray tech who helped us find a place to sleep for three hours one night when Madeline was in ICU 

 

Sharon who did an echo on Madeline the day after her surgery and still spoils her rotten at every check up

 

Chris who did an echo and discovered the power of Baby Einstein

 

Kristen, Matt, Angela, Ann, Renee, Johnny, Norma, La Donna, Judy, Linda, Holly and all our echo and EKG friends who make Madeline and Eli feel like they are the only kids in the world every time we see them

 

Dr. Blakely, Dr. Meyers, Dr. Gilbert, Dr. Karkerra, Dr. Chin and Dr. Joshi who have always given us a smile, words of encouragement and valuable information

 

Harold who provided us with whatever we needed in the ICU

 

Shelia in the pharmacy who always had the medicine we needed when we needed it with a smile and time for a chat

 

Sharon who is fabulous at taking Madeline's blood and calms her every time with her magic sparkley bandaids

 

Irma who provided Madeline meals in the hospital and stopped to pray with us at so many crucial times

 

Debbie, Susan and Alicia (Dr. Joel's nurses) who have answered all my crazy questions and still return my calls!  

 

I know this is just a scattering of all the people at Le Bonheur who have helped us and helped the 130,000 children who enter Le Bonheur each year.  When I think back to those frantic days with all our fears, ridiculous questions and requests, and our struggles to understand, all I can remember is receiving only patience, a hug, a touch, and time ... time to explain, time to help, time to hold.  They gave us their time, and giving their time (as we all know) meant giving themselves.

 

 Their gifts gave us the knowledge we needed to care for Madeline, the confidence that we could do it, and support when we thought we couldn't. For them we are so grateful.

 

Over the past year, we have met more of the Le Bonheur Family who we feel like we've known forever:  Molly, Jennifer, Meri, Janet, Maureen, Kavanaugh, Erin, Jane, Caryline, Kristen, Bob, Jan, Katherine, Kini, Amanda, Nellann, Liz, Tracy and so many others.  The people of Le Bonheur care beyond the days and weeks of admission and the brick walls of the campus. It is the building of relationships that ensures the best quality of  care for our children, and that appears to be a prerequisite to employment at Le Bonheur Children's.