Jaycee Grace Jeffries was born on February 12, 2016 at St. France’s Children’s Hospital in Tulsa, Oklahoma. She was born with multiple heart defects and Down’s Syndrome. She was airlifted to OU Children’s Hospital where she had open heart surgery to completely reconstruct her aortic arch. After a long hard recovery, she was transported back to Tulsa to finish recovering. While in Tulsa she underwent a Fundoplication, in which her stomach had to be wrapped around her esophagus and a Mickey button placed due to trauma and feeding issues. She is not capable of taking anything orally and is having to undergo multiple therapies.
Jaycee Grace will continue to live with some degree of heart failure until her next open heart surgery. She will return back to OU Children’s Hospital at around six months of age, where she will undergo a Complete AV Canal. Jaycee Grace will need to have in-home physical, occupational, and speech therapy for the next several years.
May 16, 2017
Jaycee update 5/10/17
Good news! The results of the saliva study showed that Jaycee is not aspirating saliva into her lungs.
Thank you for the continued prayers!
May 16, 2017
Jaycee update 4/26/17
We’re heading home. They didn’t have to repeat the CT. Home Heath will be bringing oxygen to the house tomorrow. She will also need to go on breathing treatments.
The CT showed that her pulmonary veins leading to her lungs are small; especially the right side. We already knew they were, however they’re concerned about narrowing. We have an ECO scheduled for June, that will indicate if they are or aren’t.
The CT showed that she’s aspirating into her lungs, and she has lung disease. Stomach acid is coming up and getting into her lungs, possibly saliva and food/drink. She’s on a high dose of Prilosec to stop the acid, and a salvia swallow test and new swallow study has been ordered. Getting her to eat is completely on her time and at her pace from here on out. It may even take a few years before she’ll be able to take everything orally. It is critical that we take no chances whatsoever with her lungs.
There’s about 5 different things that could be causing the sleep apnea. They hope that with time she’ll grow out of it. Her jaw is small, her tongue is large, and she has low muscle tone; all of which are indicative of Downs Syndrome. All of that together could be the cause. We’ve noticed since the last sleep study in January she has been sleeping on her side and stomach more, possibly God’s way of helping her compensate. Therefore, a repeat sleep study is in the works. The other causes of sleep apnea get very complicated. As long as she stays healthy and keeps growing there is no need to run invasive tests and ‘go fishing’.
September 27, 2016
Jaycee, you are so beautiful and we can't wait tell we can meet you, hopefully some day in the near future. We are saying prayers and thinking Happy thoughts all for you baby girl. Love always, Shelly and Family in Idaho.
September 14, 2016
Jaycee we love you so much praying for your speedy recovery!
Love Uncle Kelly & Aunt Sheila
June 6, 2016
Jaycee you are my little angel...with God's & your loving family you will be able to face these very difficult times that you are facing! You are so loved & needed!
Love you always! Mema
June 6, 2016
You are such a strong little fighter Jaycee! We love you!
Gheen and Devra