Taken from a post by this sweet babies mama:
This is our daughter Vivian Hope. I know, I’ve already introduced her to you. On Tuesday we learned Vivian was born with an extremely rare genetic disorder called 5p- Syndrome or Cri du Chat Syndrome. You’ve likely never heard of it- we hadn’t. We were prepared for her to have some diagnosis because of birth defects present when she joined us, but this was not something we were prepared for. We were surprised to learn that the cute little cat like cry she had is actually the telltale sign of this genetic disorder.
We are only beginning to form a picture of what Vivian’s life may look like and are learning that only Vivian will determine her limits. Those limits may place her anywhere on a very wide spectrum of disabilities and only time will tell us where she lands. We know we will give her all the love and support humanly possible to achieve her maximum potential. I see God’s hand on my sweet girl and looking back see how He gently guided and prepared me for this new calling in many ways. We are in the middle of feeling all the feelings though: gratitude, love, joy, hope, mixed with anger, fear, grief, anxiety.
I hope to be transparent about this new direction our family is now sojourning and covet your continued prayers and support and love. Vivian will have a surgery on Monday and it should be a step closer to getting us home, please pray for wisdom for her doctors and protection for her tiny body.
The website below has educated us tremendously about our CdCS girl, if you’re curious please explore it. We are still praying and hoping Vivian will be on the more mild end of the spectrum but we know she is fearfully and wonderfully made regardless of the skills she’s able to master. Today we are working on mastering the bottle feeds and she’s doing famously ❤️