Levi had been in the hospital for three months. Every day of his life since he was born. He had never felt the sun kiss his skin. He had never felt fresh air in his lungs. His eyes had never seen the true light of day. Three months… already…
He had already had three life saving surgeries, two life saving blood transfusions, and now the doctor was suggesting a fourth surgery. Since his last surgery (which we weren’t even sure worked) we had waited for recovery and we had started trying to get him to eat… again. He needed to eat the volume suitable for a three month old but had never really been able to eat for his age. Most of his growth was from nutrients pumped into his body through an IV. We had only been trying feedings for a week, but for anyone who has ever fed an infant you know… a week of feeding an infant feels like THOUSANDS of feedings… each one falling short is devastating.
One day during rounds (when the doctor updates the oncoming nursing staff for that day about the patient’s current status and needs) the doctor said to all of them, and me for the first time, that Levi had been scheduled for a G-tube this coming Friday because he won’t eat…
That was a really long week for me. I knew in my core it was wrong for him. I had a meeting… a very intimidating meeting… with the doctor and nurses and my husband and Mom (words will never suffice to explain what my husband and parents gave to me during those 3 1/2 months) where I convinced them to give Levi one more week.
Then I called Bev.
Beverly S. has a grown daughter who has Down syndrome and she has been an unbelievable mentor to me. I asked if she knew any specialists I could talk to. I just needed to know if I was being unreasonable to expect Levi to learn how to eat if given enough time. I knew nothing of Down syndrome’s physical disabilities and I needed an expert to tell me one way or the other. I needed to know if I was going to end up in the NICU waiting forever for something that would never happen or if there was hope.
Bev called the Mile High Down Syndrome Association on my behalf and they gave her Dr. Hicky’s number. I didn’t even know who I was talking to or why, all I knew was they gave me his number and I was desperately searching for anything resembling a lighthouse in this storm.
He spent an an hour on the phone with me. He learned every detail he could about Levi and everything he had been through. Then he personally found the number and called the Dr’s at the NICU. He spent at least an hour on the phone with them discussing Levi…
Suddenly, the Dr’s in the NICU felt Levi just needed more time! Amazing!
A week later Levi was breastfeeding (something I was told babies with Down syndrome often can not do) and we were headed home.
There is SUCH a list of people I will never be able to thank enough for that. Really soooo many people and if you’ve been reading this blog, you are one of them. I could never in a million lifetimes repay what was given to me during that time.
But every year, the Mile High Down Syndrome Association has a walk. The donations from the walk all go to the association to support what they do.
They were a VITAL stepping stone to saving my son from a G-tube and they may have saved his life (each successive surgery had a MUCH longer recovery time).
If you want to support this AMAZING organization and join us in thanking them for what they did for Levi, click here or the link below and join our team! We are walking together in love and support for Levi and the unexplainable, unbelievable, unreasonable blessing he has been and thanking the MHDSA for their part in his health.
There are many ways to donate.
As a curiosity project I’ve been researching global treatment of people with Down syndrome. I contacted the Down Syndrome International Group. They said, “your location in Denver means that you have access to some of the best expertise available for the development and health of your son Levi and that will be hard to match”. I believe this is in (a large) part, due to the MHDSA and what they do.
Thank you friends for all you have already given us. The blessings and prayers are, everyday, a part of my gratitude. I hope we get to see you walking with us (in spirit or in person) on September 23rd!!