This is my brand new niece, Nora Jean. When she was born on August 7th she had what the doctors called, and I think they call it this rather insensitively, “floppy baby syndrome”. She was rushed off to Children’s Hospital while my poor sister was left to recover in a whole other institution. I can’t even begin to imagine the anxiety and dread that comes from such a situation.
She started moving a little bit each day, which was such a huge relief, we thought. And please forgive my lack of any medical knowledge as I continue this blog post:
The following Friday, though, we were given the answer to Nora’s “floppiness”, if I may use such a term: she was tested and diagnosed with a rare genetic abnormality called “Prader Willi Syndrome”. I would attempt to describe it here, but to be totally honest there’s a lot I don’t understand about it other than it’s a deletion of chromosome 15 and results in developmental delays of all sorts. The most immediate of these is an inability or difficulty with suckling and swallowing.
In order to safely transition Nora from hospital to home, the good people at Children’s worked tirelessly to try and teach Nora the skills she needs to survive. Unfortunately, she wasn’t progressing as well as hoped and so my sister, Lynsie, agreed that a g-tube (a feeding tube with a direct line to her stomach, I think) would be inserted.
And I’m going to use Lynsie’s words here, because I’m still a little fuzzy as to exactly what happened: “What was supposed to be a “45 minute” procedure turned into a 2 hour surgery because of complications. The g-tube was supposed to be only a very small incision through her belly directly into her stomach; however, when the doctor made the incision in her stomach the wall of her stomach tore leaving a very big hole. In order to sew the stomach shut they had to make a large incision on her belly because of the hole in her stomach she is unable to eat until Tuesday at least. So to keep her nourished, she is on IV fluids and they inserted a “pic line” through her leg up to the central vessels to get nutrition in her body without going into her tummy. She is also on a breathing machine that breathes for her so that they can continue to give her strong pain medication and not have to worry about her stopping breathing.”
It’s just not fair.