It’s our third month here at The Sussy Project and our 4th Sussy. We love the people we have met through this project and can’t express deeply enough our gratitude for the support and energy you guys have for TSP.
We received some great nominations this month and I promise that we are still reviewing them! Please keep them coming. We would do this every week if we can only find the time so the more nominations the better. This time, we are honoring Tena.
Ryan Shaw, one of my clients, nominated Tena, one of his clients. Here is what Ryan wrote us:
One of our clients gave birth to a baby boy 2 months ago and he was born with a congenital heart defect. He has already had one open heart surgery and spent his first 44 days in the hospital. I have become good friends with this client because my daughter was also born with a CHD and had open heart surgery 4 days after her 1st birthday. My daughter is doing great now, but I know firsthand how difficult it is to go through what they are experiencing.
Thanks, Ryan. We’d love to get to know Tena and her family. I reached out to Tena this week to learn more about her little boy. We also sent her a $20 gift card to BabyGap so that her little munchkin can have some new fall digs. (Look at that picture! Could he be any cuter?!) Tena was more than willing to share the story of her son, and we are so happy that we could put a smile on her face. Here is what Tena wrote:
Our son, Myles Thomas has been through one hell of a fight in the short time he has been on this earth. He was born with a congenital heart defect; his heart is on the wrong side of his body and he was born with only one ventricle (most people have two). Because of this, his little heart has a hard time getting oxygenated blood out to his little body. Thankfully, with the wonders of modern medicine, they have been able to help to “fix” him.
On his 18th day of life, he had to undergo open heart surgery. On his 19th day of life, they found out the procedure didn’t work as expected and had to perform a second open heart surgery the very next day. Because his body was so swollen they were unable to close his chest and had to leave him open for an additional 48 hours. He was on life support for over a week. During the time he was on life support, with his chest left open, three drainage tubes coming from his belly and chest, with three different iv lines, he developed sepsis. He had two different strains of infection in his body and he started to go into shock. They were able to give him very strong antibiotics that worked but were very hard on his little body. After being removed from life support, he had to learn how to eat again and do all of the things that just allow him to be a normal baby.
On day 44 we were finally able to bring him home. We came home with him on a feeding tube and my husband and I had to learn how to put the tube in and remove it. Since coming home, he is doing amazingly well. He is off of the feeding tube and is just now battling a little diaper rash because of the medicines that he has to be on, but we will take that. Myles is truly living up to the meaning of his name (compassionate in one language and soldier in another). He is our little fighter and has taught us so much.
Through this experience, we have found out how many wonderful people and organizations there are in this world , like yourself, Ryan, and the Sussy project. Getting to share Myles’ story and hearing how it is affecting others makes us smile. We appreciate the nomination so much and it is amazing to know that people who are virtually strangers care so much about our story. We are all connected and the prayers we have sent out and received combined with the positive energy and optimism have truly carried us through this difficult time.
Myles still has to undergo quite a bit in the upcoming months and years, but this is just the beginning of his story. We are confident that we still have so much to share. Myles’ next surgery will be in the next few months, so for now, we are just enjoying having our little pumpkin roll home with us. If you would like to continue to follow his story, please feel free to visit www.caringbridge.org/visit/babyboycrock
Thank you again so much for caring and for having a wonderful organization like the Sussy Project. Blessings to you and wishing you much success!
We wish Myles a quick recovery. His adorable little smile sure melts our hearts. Thanks, Tena, for sharing your story.