Several people have asked for updates so I am just going to do one of those overall looks at Emily...
Since she isn't gaining weight very quickly, we are adding formula to her milk as well. What that means is we add protein, oil (fat), and formula to every single bottle as a way to try to add calories and get her body to absorb more without having to increase the total amount she is eating (thus over-feeding her).
She also takes Phos-NaK (for her bones) three times a day, caffeine (to keep her breathing) twice a day, pepcid (for her bad reflux) twice a day, and Poly-vi-sol (vitamins) twice a day. We feed her between 16-20 ounces a day with all those meds in between.
Developmentally she is testing at "Birth" (no real development) except in the social realm. She can sleep for long periods on her own and seems to recognize our voices so she tests at two months in her social/emotional and adaptive/self-help development. Everything else is tested based on what she does with her eyes (tracking toys, looking at faces, recognizing parents, etc) and since she can't see yet, she scores zeros. What does this mean? To be considered developmentally delayed, a child must test behind 30% in two areas. She is considered to be a six month old testing at two months in the above and testing at birth in cognitive, fine motor, communication, and gross motor skills...she is definitely delayed. I am hoping that as soon as we get her glasses things will change quickly but I am also trying to keep things in perspective and be patient and wait for her to do things in her own time.
Otherwise, she is doing really well! We are getting into a groove I can live with...yesterday I got all their stuff together, got K to the sitter and Em and I to the dr and even managed to do a couple errands along the way when I realized "This is totally manageable, we can do this"...as soon as the thought entered my brain, I tried to strike it down and erase it but it didn't work...so that left me wondering "Life seems under control? What's going to happen now?".
Have a great day! God Bless!