Moving on down...

Savi is now being fed every 3 hrs over a one hour span of time through her NG tube.  This is a long way down from her being fed continuously and getting her one step closer to being able to come home.  She did desat to 38% on her oxygen once (and in the 50s several times) after her first feeding after 1 hr but has done well with the 2nd round.  The nurse said it was most likely due to positioning and reflux.  Watching her desat to 38% scared the heck out of me, but she came out of it (just not soon enough for mommy).    She is weighing around 6 lbs, 4 oz. now.  She is scheduled for a swallow study next Mon or Tues to determine if she can take anything by bottle whether it be thickened milk or something else to decrease her aspiration risk.  We know that she has a weakened gag reflex, but praying they don't find anything structurally wrong when the study is done.
Her MRI showed polymicrogyria (meaning many tiny folds) of her right temporal lobe.  While this isn't what you'd want to hear as a parent, there are a lot worse case scenarios.  Hers being on one side only means there's a possibility of seizures.  However, if those tiny folds are seen on both sides of the brain it presents with increased intellectual disabilities.  So, here's to me praying that means the chance of her being able to walk and/or talk someday is more of a possibility due to her brain not being as affected.
On another note, last night was my first night spent in the Ronald McDonald house.  It is a very humbling experience and reality kind of smacks you in the face as you walk in those doors.  I told my mother if you had told me years ago that I would be going through this, I would have called you crazy.  Life has a way of surprising us.

*I will post pictures as soon as I figure out how :-)