Nicholas James (1:17): ECMO Celebration of Life

Tuesday, June 2, 2009

ECMO Celebration of Life

We recently went to an ECMO Celebration of Life picnic. It was a time for all of the patients, both adults and children, who had been on ECMO or life support, to come together. It was a reunion of doctors, nurses and patients. ECMO (extracorporeal membrane oxygenation) does the work for the heart and or lungs, giving them time to heal.

Below is a picture of Nicholas on ECMO. He was on it for a week-7 long, long, days. He was almost 8 months old then. May 4th, 2007-the day he "coded" and the day our lives changed forever.

Stephen and Carson-the birthday boys (May 31st) Carson is the son of Julie and Barney who both work at Brenner/Baptist Hospital. They were both there with us from day one when Nicholas had his heart surgery. Special, special people who we love very much.

Megan took this picture of Nicholas. Up close and personal.

Swiss miss cake...delicious.

Barney and Carson.

Carson giving Nicholas a kiss and hug "bye bye." Nicholas was getting excited-too cute.

Me, Mike (Dr.Hines), and Nicholas. Mike is his heart surgeon and the one who saved his life plus put him on ECMO. Could I be grinning any bigger than that??!!! Several of the Heart Moms and I have said we need to start a support group for the Moms who love Mike Hines (MLMH) You can't help but love the man who fixes your child's heart and saves his life....right, Stephen my dear, sweet, husband??

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The Broken Gift

In August of 2008, I felt led to begin writing a book about our journey with Nicholas. The purpose of the book was to be twofold: First, I felt a strong sense to intimately share with others our journey of faith. It was my desire that people who were facing tremendous “life storms” as I call them, to see that God is faithful in all circumstances. Secondly, and much more selfishly, I wanted to present Lisa with the ultimate gift, a book about her son.

I began praying that God would open the doors if that were to be His will. I shared this with only one person, Chris Lewis, and asked him to be in prayer with me. Before I gave God the chance to answer me, I had already begun writing. Five months later, I had written six full chapters. During the process, I would occasionally email Chris a copy for his input. Unfortunately, he was a bit too encouraging, and the process continued.

Chapters six and seven began to slow me down. I was beginning to feel that my writing had become more about me than anything else. Additionally, I was becoming concerned that the book was taking on the form of a journal. I knew from research that journal style books were not welcome in the tough world of book publishing.

Chris had a friend in publishing who agreed to read my manuscript and give me advice. His advice stopped me cold in my tracks. It was just as I had suspected, the manuscript was too much of a journal. Strangely though, I was relieved. I had become increasingly frustrated during my writing sessions and now I could just stop. No more writing.

A short time later, I decided that I would share with Lisa the fruits of my secret, double life as an author. I printed the manuscript off in its entirety and gave it to her to read. I had dreamed of presenting her with a paperback book with a picture of her son on it, but this would have to do.

Fast forward to today. The original intent of the book has not changed. I want people to see Jesus when they see our family. I want people to know there is hope. I want people to understand that God is bigger than our circumstances and brings us through them for a reason.

With that in mind, I decided that Nicholas’ blogsite is a great way to still get my “journal” out there, into the hands of people who may be touched by our story. Each week I will add a new chapter.

To read The Broken Gift, click on the chapters below.

Chapter 1 Code Blue
Chapter 2 Back to the Beginning
Chapter 3 New Relationships
Chapter 4 The Arrival
Chapter 5 Life Goes On
Chapter 6 Surgery