A. ~
First of all, I am sorry that your life feels so overwhelming right now. Any one of the things that you have been experiencing over the past few months (even just giving birth) is such a life change and a stressor on your life. And mom to mom, there is nothing harder for a mom I think than to see your precious little baby going through something that you can not take from them, and the unknown is always hard too.
I can not speak specifically about your daughter's condition, I have not personally experienced this. However, I totally get the overwhelmed feeling and having to try to cope with something when you just don't have all the answers yet.
I think that you are moving in the right direction to try and get help from other moms who have gone through this before you. And the second step should be to take care of yourself. You need to let yourself recover and even adjust to this new paradigm that you are facing. Honestly, when you were pregnant and dreaming of your little girl, this was probably not anything that you had considered.
I have found that what helps me is being grateful. Everyone has their struggles, whether it is health, financial, relational, and everytime I start really focusing on the areas in my life that I would like to be different, I look at the others around me who have to deal with things that I can not even imagine having to go through. There is always someone who is better off and always someone who is worse off. When my mind starts going to that crazy place where I can't think of anything but my problems, I take 10 very deep breaths, and then just start praying, thanking God for all the blessings in my life. Very quickly it changes my stress level and I can start focusing on what is possible, and not what I have no control over.
The other thing you might want to consider is that your daughter is going to draw her strength from you. So you need to find a way to be calm and strong for her. She might be learning way earlier than most that life is not always what we hope that it would be, but in spite of our circumstances it is still a blessing. I am convinced that even a brand new baby can sense the stress or the calmness that their parents are feeling and will respond in kind. So try and make sure that you are taking care of you so that you can be the best mom for her.
My best to you and your family, I know this is rough, but truly someday you might even see it as a blessing. Most hard times really are blessings in disguise.