Reflux and the first three weeks

After three days of Harry being with us we noticed that something wasn't right, he bought up most of his feeds, was extremely unsettled and distressed. Our cleft nurse spotted the signs and alerted our doctor that Harry was showing signs of developing reflux.
No matter what we tried we couldn't console him, the more he cried the more we persisted with cuddles and offering him feeds. We literally worked shifts to take care of him. I can honestly say that in the first three weeks my wife and I didn't sleep in the same room let alone the same bed.
The stress with work and Harry as well as the knock on affect on our little girl pushed us to our limits. One day he cried for over twenty hours in total.I felt like screaming,
When we told people I felt like they thought we were over exaggerating the situation. If anything we left bits out, we coped but it was hard.
Driving home most days from work thinking about another evening of screaming wasn't what I was expecting with Harry. We had been through it all with our daughter.
My wife was fantastic, I work long hours and she still managed to get things done. I came home from work and was exhausted. I felt a bit ashamed that she just got on with it and I moaned about being tired.
Our cleft nurse pushed the doctors to see him and they prescribed another reflux medicine, he showed a sign of improvement, well at least we thought but within 24 hours the screaming began again.
My daughter really struggled with it all and soon started to act differently. Finally our cleft nurse managed to get us into a specialist at the Birmingham Children's Hospital. He prescribed another anti reflux medicine on top of the two he was already on as well as paracetamol.
Again for the first 24 hours Harry showed a sign of improvement but then it started again.
My mates wanted to wet the baby's head, all I could think about was sleeping.
After three weeks we took Harry to the Accident and Emergency department at BCH. They decided to keep him in over night for observation, little did I know at the time but I wouldn't be sleeping in my bed for the next three weeks.
They weighed Harry and expressed concerns about his weight gain, to be honest I felt relieved that we were there. At least something was being done.
Again my wife and I worked shifts, it felt like we weren't even married, I would stay the night, get up and get ready for work, she would drop off our little girl at her sisters and get on the bus for the hour trip into the hospital. We barely had time to speak when she came, it was literally a quick hello and I was gone. I don't think I have ever felt so alone as I did over the three weeks we were in.
I barely saw my daughter, every time I saw her she was so different. It was sad to think that everyone else saw her developing but me.
It was like living in the film Ground hog day, the same routine, the same meals in a horrible container but the most important thing was that Harry was getting the help he needed.
They fitted him first with an NG tube, this went from his nose to his stomach. My wife and I were so adamant that he wouldn't have one, when they fitted it he looked different, I didn't like it and had always associated them with really poorly children.
Again this helped for a few days but then he started chocking on the reflux. I was scared every time it happened. Eventually they moved the tube in to his intestines, This presented other problems as it had to be carried out under xray. It was awful pinning him down while they pushed the tube into his nose. He just looked at us screaming, I will never forget that.
We were eventually discharged to allow him to put on weight. We would back within a month to see the specialists and see what the next step in the journey would be..........