I emailed this when we had our final diagnosis about Dekar.  There was much uncertainty for about a month–not knowing what was going on with our baby when all had seemed to be going fine.  I can vividly remember the raw emotions that flowed when the doctor called with the final diagnosis.

“Our baby boy has been diagnosed with a chromosomal abnormality called Trisomy 18. It is caused by the presence of three — instead of two — copies of chromosome 18 in a fetus or infant’s cells.
What this means is that the prognosis for the baby’s survival is not good. Along with (and/or because of) Trisomy 18 he has a heart that is not formed correctly (most likely only two chambers, possibly three) along with a brain and kidneys that have not formed correctly. The dr. says there is a small possibility the baby could be born live but if he does, he would not likely live long. There is also a very good chance that he will die before birth. Thankfully, he is not in any pain now.
We have named him Dekar (pronounced Decker)–a name we picked out a while back. It means “pierce”. He certainly has pierced our lives–with unexpected pain, but mostly with an overflow of love for him. His tentative middle name is Ezri, which means “helped of God”—and God is truly his only hope now.
Please pray for peace for all of us. There is still much uncertainty in the coming days and it is all in God’s hands.
Marge and the rest of the Schmidts”

Side note:  We have never found out the gender of any of our other babies before birth. Dekar was the only one we requested to know the gender since we felt it was important to have a definite name for him beforehand.  We did use the name Ezri–it was very fitting, and still is.  We know God was with us through the whole thing, and even prepared the way before we even knew anything was wrong.  God gave the OB/GYN  “eyes to see” and the wisdom to check into something that seemed like a small thing—the baby seemed to be growing slower than my other babies…That actually is a whole ‘nother story in itself. 

After hearing the news of the final diagnosis we met with doctors several more times to find out exactly what was going on with Dekar and started formulating a birth/death plan–otherwise known as “Praying for a miracle, planning for a funeral”!

 

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