First off, thank you all sooo much for the kind words and support. Honestly, if it wasn't for being able to come here, I probably would have thrown in the towel. People IRL are dumbfounded that I am still trying to breastfeed etc.
I had started a TED thread in the Allergies forum and upated there...I'll link below, but the long and short is:
She started reaction to the Alimentum after 48 hrs on it (which historically was the longest we had done at a time). We went back to our regular Dr yesterday. They did blood work, repeat newborn screenings and an abdominal xray and we will get those results tomorrow. We have an appt with the Ped GI Dr in freaking October (end of) because she is not malnourished and isnt critical enough. IF something comes back on the blood work or xray, or if she declines further, they will see us sooner. I tried telling them she is only normal weight because I spend hours a day trying to get 1 oz down her at a time as she never cares to eat much since she is always in pain. But whatever. Our Dr said lets get these tests back and we'll find a way to get in sooner.
In the meantime she prescribed Neocate, which I too to the pharmacy yesterday and they had to order it. Since I had a day to wait, and she was pretty crabby in general, and since I was 6 days into a new TED, I decided to nurse her exclusively for the last 20 hours or so. Went fine, she woke up a little congested this morning, the it quickly went downhill...hurling phlem, really congested, red eyes, and then the screaming/writhing about kicked in. Way worse the the reaction she got after the 48 hr on the Alimentum. DH just dropped the Neocate off, and she is sleeping on me right now, so I think I will try to go that route when she wakes. I hate hate hate going back to a bottle and pumping and stuff after such a nice day and night of nursing.
Totally breaks my heart.
Our insurance doesn't cover the Neocate, which is $50 for a 2.5 day supply. Ouch. We pay freaking $1000/month for good group insurance (DH selfemployed) and it doesnt cover it since Kansas doesnt mandate it. Bah.
So my plan....give her Neocate and see if she is blissfull happy. Keep on this new TED and every 3-4 days try and nurse her a few times and see what happens. I'm going to keep pumping in the meantime and contacted a milk bank to see about donating. If anything comes up on the tests tomorrow, we'll go from there.
Here is the link to the other thread for updates: http://www.mothering.com/discussions...1258765&page=2
And here is a pic of baby E, who despite it all, had just found her thumb. http://www.mothering.com/discussions...pictureid=1822