The aftermath

Ok, so now that I have let everything soak in - I am ok with things today!  I need to not focus so much on the what if's and the far away future.  Need to live in the moment and realize the progress we have made already.  She is my little cutie patutie and nothing will change that.  With that being said today we bumped her up to 26 calories per ounce in her formula.  We still have that other issue - her weight!  She still needs to keep consuming between 18-20 ounces a day - and let me tell ya , its a struggle sometimes.  Hopefully her Malrotation of her small intestines will at least help with her food intake.  I made several calls today and we did get lined up the genetic appt and the ENT appt on the same day!!  both are set for May 17th.  Surgery is still a no go because the surgeon in charge is out right now on a family emergency.  I would guess within the next month or two that will be scheduled.  So for now we will just take one day at a time and by the looks of things - we get a break from GR next week:)  Thanks everyone for the love, support & prayers!  We truly are blessed to have such wonderful people in our lives to help guide us and give us strength to make it thru this tiny obstacle. 

Steph