This week is feeding tube awareness week. As a baby Freddies feeding tube was a massive part of his life, it was his way of staying alive. Without it I don’t know where he would be now.
Since birth Freddie was a bad eater, but for the first few weeks of his life I manged to get enough milk into him to keep him satisfied. At 8 weeks old Freddie was hospitalised as he was very underweight and had blood in his nappies. He was diagnosed with a milk protein allergy and reflux. As his weight had dropped very low we had to start feeding Freddie via an ng tube, an ng tube is placed up the child’s nose and goes into their stomach.
Freddie had always had problems sucking on his bottle but it was now becoming more obvious that the problem was so bad it was preventing Freddie from taking enough milk. The ng tube was only meant to be temporary. We expected it be there for a few days until the doctors could help Freddie learn how to feed from his bottle properly. Several different feeding specialists tried to show us different ways to feed Freddie but nothing worked. So after a few weeks in hospital we were discharged home with the ng tube in place.
Freddie would constantly pull the tube out. We would end up down the hospital nearly everyday getting it sorted. Repassing it was so hard due to Freddie having such small nasal passages. He would have to be pinned to the hospital bed while the nurses tried to get the tube up his nose. He would turn blue as he struggled to breath and would get so distressed. The tape also irritated his face and his skin would go so sore.
For us the ng tube was a bad experience. Freddies feeding wasn’t improving and we were advised to have a more permanent feeding tube put in. So in January 2011 Freddie had his first gastrostomy operation & had a peg inserted.
The peg made life alot easier. No more pinning my son to a hospital bed while nurses struggling to repass a tube, no more sore, burnt skin and no more tape covering up his beautiful face. But we didn’t like having the tube dangling around all the time. It became a bit of a pain, Freddie would pull at it & it kept getting caught on things and we became worried about it being pulled out. So 6 months after the peg operation we took the next step to have another operation to have a mickey button fitted.
Having the mickey button made life alot easier. We were so glad we made the decision to have it done.
Freddie’s feeding has improved so much over the past few years but we do still rely on the tube not just for food but for his fluids and medicines too.
To me and my family Freddie’s tube is so normal and it’s not a big deal. Although looking through the pictures of our ng tube days brings a lot of hard memories back.
I do wonder where we would be without these tubes. Freddie simply couldn’t feed and without food he couldn’t thrive. So if he couldn’t thrive he simply couldn’t live. So to us the tubes are lifesavers.