Need Help

Just for starters I want to say this is a last resort for us. This is not something we would usually just jump on board with and also a decision we have taken quite awhile to come too BUT every hour that passes things seem to be becoming harder and harder. Months ago we found out our little girl had gastroschisis, no problem we can deal they told us the process they said it would take some time but everything would be ok. They said they would induce me on July 9th and we would start the journey. Well, the morning of June 26th came and my water broke. Our little princess had other plans for us. We went to the hospital and after 24 hours she was here. The only issue is that what they thought the plan was WAS NOT how it was going to be. They had said her intestines would be put in a silo and when they worked their way back in we would work on feeding. Not the case. When she was born all of her small intestine was outside and it was dead, they had to take her to surgery and remove It and said that there was 15 cm left inside. Not enough to absorb nutrients for her to survive. We then had to come up with a different plan. She had to have a central line into her chest to feed her IV nutrients, she does not eat by mouth. (Not something we were prepared for) they did surgery to put her back together but she will be on IV nutrients for years if not a lifetime. She will need a small bowel transplant that will be done in pittsburgh but she can’t have that till she is older and as hard as it is to say, that’s not a guarantee fix for her either. She needs constant 24/7 special care and there are no nurses able to come to our house to care for her. It’s only been 6 weeks and my disability has cut off my benefits, at this time i have no income. They took away my benefits before my postpartum visit even occurred. I’ve called and called and even had the NICU write a letter stating i can’t go back to work due to the constant care i have to give Jayci and the things i have to learn in which they denied. This really isn’t the route we wanted to go but every way we turn we get denied. We are exhausting every option possible to keep us afloat and those options are dwindling down to nothing while the bills are rolling in and life isn’t stopping to let us catch up. If you find it in your heart to help us anything is helpful. We understand times are tough for everyone and Doing this isn’t my first pick but this seems to be our last reach for help.