Has it been over 2 weeks since I updated this thread? That just seems crazy to me.
Ellie is doing well - its been a little bumpy with an infection that while ultimately harmless was a little bit of a setback for getting her respiratory and digestive issues where they need to be. She was on a ventilator for about a week but is now just back on CPAP and that should be able to come off soon as she is breathing better than ever. She has been gaining weight and finally surpassed her birth weight last Thursday or so. Grams never meant so much to me before.
We do have a new concern that popped up last week - the eye doctor thinks there is a significant chance that on top of everything else she is potentially blind as well. That was a bit of a blow but we've made peace with the idea and are trying to retool our long term plan (ha!) based on that possibility. We don't expect to have that information confirmed for quite a while - I swear she has looked right at me when she's opened her eyes though. We'll just have to wait that one out.
Also, I thought I posted a link in this thread already but I have a gallery of pictures I've been maintaining better than this thread - its not super private or anything but I'm going to spell out the URL all the same: dr_fish dot speedymail dot org slash ellie (as a proper noun "Ellie" should be capitalized in the URL).
Lastly I wanted to share the name of the particular syndrome that Ellie is diagnosed with, its called Cornelia de Lange and there's a lot of info about it online if you are interested on brushing up on it - I had never heard of it until Stacy's doctor mentioned it as one possibility a few months ago. If the first thing you do is check Wikipedia and see the list of characteristics for the syndrome I can tell you that she exhibits about half of them already so even though she hasn't had the blood to spare to confirm it genetically its all but certain.
She's tough though! A real fighter - kicked that infection's butt like it was no big deal and very feisty if she is awake/uncomfortable or if you mess with her to change a diaper. We've said since before she was born that she just wanted extra attention and so far that continues to be the case.