Freddies been a tubie baby since 8 weeks old. I remember being in hospital with him and there were 3 nurses trying to get Freddie to take a bottle of milk. At this point I felt like the worlds worst mum. My son was losing weight because I couldn’t feed him. I remember thinking it must be something i’m doing wrong, maybe i’m not holding him in the right position or something. The 3 nurses also couldn’t get him to feed so next step was an ng tube down the nose. It will only be for a few days they kept telling me, just until he learns to feed..20 months & 2 ops later we now have a mickey button.
It was a hard journey in the begining. Freddie pulled the tube out constantly & as Freddie has such small nasal passages & went crazy when it needed to be repassed i left it to the experts to do, so we visited the hospital a good 4/5 times a week to get it repassed. We got to the stage where his face was covered in tape & his hands were in socks to stop him from pulling it out.
For us the ng tube was a bad experience & as Freddies feeding wasn’t improving we were eagar to have a more permant feeding tube inserted. So in January 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 face & 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. 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 made life alot easier. So glad we made the decision to have it done. Freddies feeding has improved over the past few months but we do still rely heavily on the tube not just for food but for his medicines too.
To me and my family Freddies tubes are so normal & they are not a big deal. Although looking back through the pictures of our ng tube days bought alot of hard memories come flooding 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.
I have written this post as part of the #definenormal blogging challenge at http://www.justbringthechocolate.com/define-normal/