Help Anaya's Recovery

I don't even know where to start... Our beautiful little butterfly Anaya-Rose was born on the 25th of May this year. We we're able to take her home 4 days after birth, but we knew from day 1 there was something just not right. During feed time, either by breast or bottle, she would cry out & gasp for air as, more often than not, milk would come out of her nose and mouth. She would start screaming & we didn't know what to do .. We had an 'at home midwife' with an apparent 44years experience coming around every second day to help us. She said it was just how Anaya was feeding (guzzling). She suggested all these differant ways of feeding which eventually led to us purely bottle feeding Anaya so we could monitor how much milk she was actually getting & so we could try a range of differant teats. But nothing was working... We kept telling the midwife that something else was wrong, but she didn't listen to us. After 2 weeks Anaya had lost 410grams from her birth weight of 3150g.  The midwife eventually suggested we take her back to the hospital, as she wasn't gaining weight and had now been classed as 'Failure to Thrive'. When we turned up the pediatrician examined Anaya and watched her feed. They then suggested a super-slow Premmie baby teat. (It obviously wasn't going to work & we did try telling them, to no avail, but we tried it) After 3 days of battling with the hospital staff they finally got a Speech pathologist to come see Anaya feed. Straight away she saw an issue and stopped the feed. 5 minutes later our daughter had a gastrointestinal tube inserted down her nose and we were told that she was an extreme case of asperating but they didn't know why..   More than 20 different staff had seen her feed prior, most of them midwives, nurses, community nurses & doctors. None of them would listen to us and they never picked up that our daughter was struggling to breathe.. The hospital then organised us to go to another hospital for a Barrium swallow & a Follow through scan so they could see what was happening while Anaya fed. The test was supposed to take 20-45 minutes, however 2 minutes in they stopped it and ran around in a panic as they realized she was asperating (milk going into her lungs). The breast milk was being blocked in her throat by a tissue obstruction, swirling around and travelling back up & out of Anaya's nose & trickling into her lungs. She was rushed in for emergency surgery the next day... (saturday) They found that the muscle that opens and closes off the air & stomach pipes whilst breathing and feeding, was tight and not relaxing. Thus not allowing the milk to pass through to her stomach. Whilst under anaesthetic, they attempted to use the camera and a tool attatched to it to widen the tissue obstruction. Straight after surgery Anaya was considerably worse. She couldn't swallow her own saliva and required several suctions. Every day she needs suction.. The surgeon told us that it should improve as the area would be inflamed from surgery & that he wanted Anaya to go for another barrium meal scan on the monday to make sure the surgery worked. But the hospital stuffed up the appointment and made Anaya wait until thursday. Thursday's barrium test showed that the surgery wasn't successful . Upon talking with the ENT's (Ears Nose & Throat Specialist) they told us that they're not sure what they can do to help Anaya at the moment. They're consulting with Sydney, Melbourne and America to try & find a similar case or some direction as to what to do next. They need to do more research as they apparently have never had a case like Anaya's before. The unofficial diagnosis atm is Mild tracheomalacia tight cricopharyngeus muscle superiorly. But they don't think the treatments available for this will help Anaya, so now were waiting for them to get back to us. We're nearly at the stage where we could take Anaya home but she needs to be on a 24hr neonatal monitor with access to suction & an air ventilator incase she needs it. The equipment is available but we have to buy it, hence why I've turned to gofundme. (Once Anaya's better we'd gladly donate it to our local hospital) Once we get Anaya home, my partner will be Anaya's full-time carer as Anaya will have to be fed through the gastrointestinal tube until the ENT's find a way to help. Throughout this whole process we have been put out mentally, financially by the costs of parking, transport, medical and food. The main hospital we've been at doen't supply mum with food or accommodation to be near Anaya, especially when Anaya is breast fed only. (To me that promotes postnatal issues) I live 40 minutes drive either way from the hospital. Also centrelink won't pay my partners maternity pay as she fell short of meeting their work test by 5 days. It's currently in arbitration & could be for another 30 days with no guarantee of success... (She was 5 days short only because she had a serious car accident & eye surgery last year & couldn't work until she was able & cleared by the doctors. Plus she had to finish working early due to pregnancy complications) We've only managed to register one car for 6 months as both were due for rego last month.   Our loan repayments & bills are all half paid with extentions in place or simply on extention.  I'm also working 8-13hour days monday to friday, struggling mentally and physically to keep everything together, bills met & to be there at the hospital to aid where I can. If anyone can help, even a little.. we would be very grateful. Thank you in advance, Shawn, Nadia & Anaya x