Jada Elenbaas Little Miss Jada

First post: Sep 13, 2016 Latest post: May 9, 2019
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.

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