Feeding Tubes

We left Birmingham City Children's Hospital with Harry being fed from a feeding tube. This meant carrying around a little black ruck sack with a pump and feed. Being in the hospital cushioned us from the stares that we would got when we left.

His tube was taped to his nose and it only seemed to highlight that there was something wrong with him. When Harry was first born we would notice people staring or taking the second glance over the shoulder as they walked past. It really bothered me that people wouldn't have the courage to come and ask or even stop to speak. The feeding tube seemed to make them stare even more.
We found the older generation alot more positive about the situation we were in. Often the first thing people would say was oh dear whens his operation. I think sometimes they forgot that this was our son, my little baby and it really made me angry when people reacted in that way.He was beautiful but sometimes it felt like our family were the only ones who could see past his cleft.

We had remained adamant that Harry would never have a feeding tube but after a few days it became as normal as making milk for our daughter apart from Harry's feeds were continuous. We were so scared about Harry pulling his tube out, and as we would find out it wasn't as simple as just turning up to hospital to put it back in. Harry was fed via an NJ tube which meant it had to be put in under xray.
My wife and I were so over protective, scared to let him use his hands in case he managed to grip it. But the inevitable happened, I was at work and my wife phoned to tell me that he had some how pulled it out completely!. She had arranged care for our daughter with her mom and we rushed him back in.
It took 26 hours to get him a slot in xray with a specialist. It seemed like an eternity, I stayed with him over night watched him squirm and scream, It was awful so see him staring at me wanting me to feed him but all i could do was cuddle him. The next day they took him down to have the tube placed, this time my wife went with him. I think sometimes we all find strength that we don't know is there and she certainly did that day.
It really makes me appreciate how strong my wife is because there have been times that without her I wouldn't have been able to cope. We did argue but more often than not tiredness and frustration were the real issues but we were always there for one another. I think that was the key to getting through the first couple of months. We had that much thrown at us it felt like it would never end but together we managed to over come.

 I felt sometimes like everything became so much of a weight I couldn't cope.Writing this has made me open up more than I have before, I think men generally are reluctant to share there emotions. I hope that those that read this realise that the feelings and thoughts going through there minds are normal. There is a light at the end of the tunnel!!

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..........

The Beginning Of Our Journey

The Beginning of Our Journey My wife had attended the twenty week scan without me, due to work commitments I had been unable to attend but I had been waiting for the phone call to to tell me how she had got on. I remember the phone ringing but when I answered I could tell that something was wrong. She had noticed that the scanning nurse looked concerned and had asked a doctor to come in annd have a second opinion.They had taken her to a side room where the gave the news. They had informed her that the scan had shown that our child had a suspected cleft. I came off the phone and felt numb, I had only ever seen pictures and certainly never imagined that my child would have one. I got home from work to find my wife upset and holding on to some leaflets she had been given by the hospital.I couldn't look at them. I took myself away and sat on the end of the bed with them beside me. It was probably one of the worst feelings I can describe as I flicked through the pages looking at these children with varied gaps of all shapes and sizes, some wide, some taller. I didn't know what to say to her, all the time in the back of my mind I questioned my feelings for when the baby was born, would I feel the same, how would we cope. The next day we were contacted by Birmingham Children Hospitals cleft team. They arranged a time with my wife and we waited for the nurse to come to our home. A lovely nurse visited us and with a soothing tone reassured us that support would be there, she showed us photographs of other children, both before and after the operations. Still the thought was there in the back of my mind, I felt shallow and ashamed. I couldn't tell my wife how I felt and to be honest I shut down, didn't talk about it and put on a brave face. It ate away at me over the next few months, we had more scans, more visits from our nurse. They arranged for us to go to a bonding scan, a 4d scan that would show us our child's face and to give us an idea of what to expect. My wife was physically sick on the way, a mixture of nerves and morning sickness. I remember holding back the tears as they showed us the pictures. Every possible thought ran through my mind. On the way home we hardly spoke. The following few weeks seemed to fly by, the hospital and midwifes had made arrangements for the delivery but on the 17th of December at 3.06 am our baby was born. As the midwife delivered him and turned him over my heart went into over drive, but as I saw his beautiful big eyes and his full head of hair the cleft seemed to disappear from my thoughts. I had a gorgeous son and that was all that mattered.