Baby Reflux

My daughter has reflux. I know all babies are sick to some extent, but I had never before heard of babies suffering as terribly as mine did in the early months.
I am certain she has had it since birth. I was in labour for 3 days before she was born, in the end by emergency forceps delivery. She had mucus in her mouth and nose for the first day or so, which the midwife told me was common, but was stopping her from feeding. In the middle of her first night she woke hungry, and I fed her, but half way through she started crying. I asked the midwife what I should do, I was worried, she was still mouthing, but wouldn't feed. The midwife told me she must have done a poo (which she hadn't) and left again. I just felt like I was failing at breastfeeding already.
The first week was incredibly hard. She didn't sleep, she would scream if we laid her down in her moses basket, and she was sick all of the time, even hours after feeding. I couldn't latch her on properly and ended up in so much pain that my milk was not coming through. The midwife came to "show me how it is done" and left unsatisfied, even she couldn't get my baby to latch on. She wrote in my notes that my daughter was fussing. She was loosing too much weight and I was told to top up her feeds with a syringe of milk. I decided after a week that I would have to bottle feed, and, after being made to feel like a murderer when I told my midwife, felt like a weight was lifted and moved to formula. (as a foot note, contrary to the government's caution on formula feeding; my baby didn't have any infections during her first year, and many of my friends who did breastfeed for 6 months have had ill babies). I had to hold her upright 24hours a day. This meant sitting in a bed propped up by pillows on all sides, wide awake, scared stiff that I was going to drop her if I slept. She cried if you fed her and cried if you didn't feed her, it was a horrible vicious circle. My health visitor told me she was just a cry-y baby, and that it was ok to leave her to cry. She brought me a leaflet on crying babies, and told me I had post natal depression when I cried. I was fairly certain that, whilst it was a depressing situation, I wasn't actually depressed. This lasted for 3 weeks, until at 3am one night, I read a chapter in the Gina Ford Contented Little Baby book, on reflux.(The New Contented Little Baby Book: The Secret to Calm and Confident Parenting) It described my daughter exactly, but best of all, said it could be treated. My hands were shaking as I held my mobile waiting for the doctors surgery to open, so I could ring and get an appointment for that day.
By this point she was gaining weight (through me staying awake, sometimes for 3 days in a row, feeding every half hour, with her only sleeping upright in my arms, for around 20 mins a time), so I was concerned that the doctor would just send me home. I was careful not to mention that I had read about reflux, instead I just described her symptoms and let the doctor tell me. She prescribed infant gaviscon, I thought it would be our saviour. I rushed to the chemist, but they had just that minute closed for an hour's lunch, during which time they would not dispense. I couldn't bare another minute without some help for my baby and in despair I sat on the floor and cried my eyes out. I must have looked a total state, as one of the men behind the counter took my prescription and dispensed it for me anyway.
The first time I added it to my daughter's bottle, she lasted 4 hours before her next feed, instead of 30 mins to an hour. She even had a small sleep in her carseat. It was then that it occurred to me that the only times she ever actually slept, she was in her carseat, so that night I left her in her seat next to my bed, and she slept for a few hours for the first time. I thought we were finally making some headway, but felt terrible that she was in a carseat (she actually slept in it positioned in her cot for 6 months, my doctor said it was better for her to sleep at all than never sleep, and that it wasn't possible for me to hold her all of the time, so needs must). This all lasted for a week, when it seems the effect of the gaviscon wore off, and we were back to hourly feeding/waking. The doctor referred us to the children's hospital (this took 6 weeks). I spent my time researching reflux on the internet. I bought a steep wedge & sleep positioner, again thinking it might just save us, but again was disappointed as my daughter would not sleep in it. We decided to see a cranial osteopath. After 3 weeks (6 sessions) with the osteopath, during which time my daughter got worse, he said to me "there is nothing more I can do", my heart sank.
At 10 weeks old the specialist at the children's hospital told us that our daughter's oesophagus was burnt from the acid, and that even with ranitidine and domperidone (which we had now been prescribed) it would take around 6 weeks for her to recover from the burns. In some ways it was helpful to know that there was a reason why she was crying so much, on the other hand this seemed like an endless amount of time. He told us to start weaning at 17 weeks, and that she would be totally recovered by 6 months old. At 13 months, she still has some reflux symptoms.
I think she made the most recovery between 6-8 months, but sleep has always been an issue, as she has always woken for milk in the night. She still has terrible hiccups everyday, and discomfort when eating/drinking.