long day today

today was our GI appt, and for some reason i had a feeling it was gonna be a long day, and i was right... the good news is that Daryl had her long, dangling feeding tube replaced with a small little "button" (a small tube in the same place, only it isnt long so it wont get tugged out as easily). i got to be there for the replacement, and in fact if Daryl has to have the tube in for longer than 3 months then I get to be the one to replace it (the nurses are teaching me how to do it) its not so bad i guess, just weird sticking a tube in my daughters stomach... the bad news is that she has not gained hardly any weight in the two weeks that we have been home, which means that breast milk is not enough and she is gonna start on a special formula called Pregestimil, which is supposed to be easy for her to digest. its expensive as hell and it took Scott and I 6 stores and 2 hours to find a place who sold the stuff... man its expensive... but oh well. we have to go back and weigh her every week, and if she hasnt gained 5 ounces in the next week then we have to start her on a constant flow of formula which runs through her G-tube over night, so she will absorb enough nutrients to gain weight. the doctor also had a blood test for her to see if her liver is functioning better. i got to be there also, to hold her while they stick her foot and draw blood from her.. she did really good though, she hardly cried, she is such a strong girl! now we are home and exhausted, but hey!! at least we are home with her and not still in the hospital.