Help For Baby Phoenix

At around 13 weeks pregnant we found out we were having out little girl and that she had a 99% risk of being born with down syndrome. My fiance richard and i chose not to do an amnio because it didnt honestly matter to us. Later in the pregnancy we found out she had a vsd (hole in her heart between two of the chambers), however the hole looked small and the doctors thought it would close on its own or not affect her for months after birth. I was induced at 39 weeks giving birth 4/22/2017 and since then phoenix has been in nicu at our local hospital. She was on nitric oxide and oxygen, antibiotics and being tube fed. Recently after almost being off oxygen we found out the hole in her heart (congenital heart defect) has gotten bad and is very large, she has pulmonary hypertension, enlarged heart and extra fluid. The original idea to keep her local and let her gain weight is no longer looking to be an option much longer and she will be transfered to shands in gainsville for assessment and open heart surgery. We have no clue how long she will be there or how long she will be in the hospital period. Her father will be staying to work and come during surgery and hopefully his days off. However we only have one minimum wage income and we live 4.5 hours away from where her surgery will take place. I will stay with her the entire stay and once she comes home she will have to return to shands in gainsville or nemours in Pensacola for doctors. We are currently working on applying for her ssi but our funds currently are extremely limited. We are looking at lots of gas costs, hotels, food and plenty of other expenses coming our way. Our goal is to make sure she gets the best care possible and we can be with her as much as we can. I hate asking for any help but right now anything at all is a huge help, we honestly just want our little girl to get the medical help needed and eventually home with us no matter what it takes to make it happen. This thursday may 11th another echocardiogram will be done and a decision will be made on how soon her transfer will happen. What we once thought may not happen at all or at least anytime soon may happen as soon as a week. The scariest feeling is watching your child suffer and go through things you have absolutely no control over or can do anything about. All we can do is be there for her every step of the way. She has been the biggest blessing to us both.