Sep 13, 2016 Latest post:
Jul 11, 2018
Miss Jada was born prematurely on September 2, 2016 at 34 weeks 2 days gestation. She weighed 5 pounds 4 ounces (which is quite large for 34 weeks gestation). She was initially on CPAP (continuous positive airway pressure) for about 12 hours to help subside a few apnea episodes. She was on IV fluids for a few days and advanced to full feedings in a short amount of time. We expected Jada's stay in the NICU to be a few weeks, until Saturday, September 10. There was an abnormal reading on her newborn screen (a blood test required for all babies by the state of Michigan) that indicated something might be wrong. This condition was confirmed by a different blood test on Saturday. Jada has Complete DiGeorge Syndrome. Complete DG is a rare disease that up until a few years ago was not regularly screened for. Jada is very blessed to have been diagnosed so quickly. Basically what CDG means is that Jada does not have an immune system. Thankfully, there is a thymus transplant that can be done in order to give Jada an immune system. This will hopefully be done In her first year of life at Duke University. It is very important that Jada stay protected from anything that could cause illness. She is isolated in the NICU and visitors are limited. There will be many tests done on all the family members before the bone marrow transplant procedure can be done. Jada and her family (Odyn-brother, Amanda-mother, Mike-father) most importantly need prayers for peace, acceptance, healing for Jada, and some normalcy for this family as their lives have been turned upside down and will be very different now. Jada is doing very well otherwise. She has been making some progress on eating from a bottle. She is still premature and sleepy most of the time so it will take some time for her to be able to take a full bottle every time. She is a feisty little girl when she's awake, but very willingly falls to sleep when she is swaddled. She loves to be held, especially by her mama. She has been gaining weight well, which is a blessing as she will need to be bigger for some of the things required for the bone marrow transplant. She is a little fighter.