February 9th - 15th is Feeding Tube Awareness Week, why? Well, why not celebrate something that helps keep so many people alive?
Prior to Lyla I didn't know what a feeding tube was, I guess I had no need to. However, I am sure I would have seen people around with nasogastric tubes, or being fed through syringes before, and I probably looked at them and thought 'what on earth is that?' Nowadays, I can spot them like a sore thumb, except I look at them and think 'we have one too, I can relate'. Though they probably think I'm just like the next person looking at them and thinking 'what on earth is that?'.
Our feeding tube journey started hours after Lyla was born. She did not require one because she was premature (like many thought), she required one because she could not feed orally, she just didn't know how, she didn't have that newborn rooting reflex. This we later found out was more than likely due to her brain malformation, something that meant her face and throat muscles were affected, making it very hard to swallow, eat, talk, etc. The first time I saw Lyla with the nasogastric tube (NG tube) she was about half a day old and it was the first time I was really able to see and hold her, I don't even think I asked anyone what it was, and I probably didn't even care, I was just glad to be able to finally see her.
I quickly became accustomed to the feeding tube way of life; I had every size syringe known to man and I had enough them, as well as PH tape, Duoderm, Coloplast and Hypafix stock a hospital supply room. I knew all the terminology, I knew the different types of feeding tubes and I knew the different ways to give a feed. I was set.
It took over 8 months of being on the surgical waiting list before Lyla was able to get a permanent feeding tube (Gastrostomy / G-Tube), so by the time it happened she was 19 months old. It was a date that couldn't come quick enough. I was sick of the NG tube. I was sick of ripping it out. I was sick of Lyla constantly choking, gagging and coughing on it. I was sick of rushing her to the hospital to get it replaced. I was sick of having to put her through attempt, after attempt, after attempt of trying to have it put back in. I was sick of the risk of it being inserted incorrectly. I was sick of it possibly moving and constantly checking the placement.
The surgery happened June 2013, it went great! Straight away we saw a change in her, she wasn't gagging, she was making vocal noises, she let us put a dummy in her mouth and she began to lick food. 8 months on and it is still the best thing we did. Lyla is fed full time through the G-tube and I have no expectations that she will eat orally, and that's alright. We give Lyla 5 bolus feeds a day (a feed given over a short period of time) via a syringe if we are out, or an automatic feeding pump if we're home (that frees me up for 20 minutes). She is on a specialised pre made formula, which looks very much like an iced coffee (and I have to reassure people that I am not giving my 2 year old coffee). I have been wanting to transition Lyla to a blenderized diet for about a year now, but I keep delaying it for some unknown reason... Maybe I'll start next week ;)
My first NG tube
My last NG tube - Operation Day
Gastrostomy / PEG
Current G-Tube / Mic-Key Button