ausEE Inc.

a charity dedicated to improving lives affected by eosinophilic disorders

Tube Feeding Blog

The Decision

Posted on January 9, 2011 at 3:24 AM

I thought it would be a good idea to put in writing my thoughts during this process – therapy if you will, and hopefully it may help some other parents going through something similar along the way. For us this has not been an easy decision and certainly not one made overnight. Bella was diagnosed with eosinophilic oesophagitis (EE) at 18 months old and she has been on the bottom or off of the percentile charts from when she was 4 months old so has always been classed as failure to thrive (FTT).

 

The possibility of a feeding tube had been raised many times over the years but I guess serious talks only started a few years ago when she was just about to start prep/school and we decided against it at the time because we were worried about the psychological impact it would have on her. Bella was completely and utterly adamant she wasn’t having it. Every time it was bought up she would beg us, "I promise I’ll drink more, I pinky-promise I’ll eat more". We couldn’t even mention the TT word without her breaking into tears so in her mind it ended up being a very negative thing. We may or may not have taken the right path by letting her make her own decision on this but as she was capable of drinking and eating physically on her own ,she has always just scraped through holding her own. We just couldn’t force it upon her and decided to continue with the constant struggle and battle for her to get enough of that all-important intake.

 

In hindsight (as it has turned out) not getting the tube for her when she was younger has caused just as much (if not more) psychological impact on her with the never-ending pressure and focus around food. Neocate has been put on her each and every day of her life. I can’t even begin to list all of the things we have tried over the past 6 years to get her to drink more, and the advice we have sought (and not to mention the well-meaning advice given but not asked for), we have tried positive encouragement, endless reward charts, bribery, negative and positive consequences, talking about it, not talking about it, letting her eat what she wants when she wants, having structured meal times and once I even tried an online pet that she had to feed every day in order to keep it healthy. This plan quickly back fired because she wanted to make the online pet sick because it was fun to take it to the online hospital!!

 

Meal times have rarely been a happy time at our house and we now also have a 5 year old daughter Olivia who has picked up some bad habits along the way that need addressing. Of course, we have gone to all these great lengths as all parents do in an effort to reach the goal of having a healthy happy child. Whilst Bella is happy most of the time she does still and always has experienced some pain and symptoms and she (it breaks my heart to say) has never looked like the ideal picture of health and gets tired very easily. It didn’t take long for us to notice a difference between our two girls when Olivia came along and with the two year age gap they weigh the same. Bella has become increasingly conscience and worried about her size and comments on this often. We just want her to thrive and be the best she can be for herself. She has done as well has she has only because of Neocate for her main nutrition and our many trips for McDonalds chips to help with the fat intake (and let me say a lot go in the bin as I now actually am sick at the sight of a hot chip)! We are extremely thankful that she was able to drink the Neocate as long as she has but as she has been getting older it’s been getting harder and harder for her to drink enough of it and now she has begun to get anxious about other people seeing her drink it and doesn’t like to be seen as different than her friends.

 

So what helped us reach the decision? Well for my husband, Jason and I, we have accepted that this would be the best decision for her health and since getting more involved with the EGID community I’ve heard a lot of success stories about kids who have feeding tubes and how much pressure has been lifted and how well they have grown with it. We feel like we are pretty much at the same point now with Bella’s FTT from when we started and we’ve all put in heaps and heaps of effort but haven’t been able to ever reach the goal and the stress is taking its toll on us all. We’ve begun to regret not doing it earlier but we can’t turn back the clock so if every year we say we wish we did it when she was younger then we’ll be always be saying that and we’ll never get on top of it and she may possibly never get the best chance to reach her full potential.

 

For Bella it’s a bit of a personal story for her about why she came about the decision and when she actually said the words “Ok, I’ll get a TT” to me, two weeks before Christmas I didn’t believe it – you see she’d said it before over the years when she’d reached breaking point and then immediately taken it back and ended up in tears and even more against the idea then before but this time she didn’t take it back and she seemed to actually be really at peace with the idea. I wasn’t game to even mention it to her for days after she said it in case she changed her mind! I tippy toed in the background making the arrangements to get an appointment for it so we could start the school year with the tube. Gradually since then she has wanted to talk about it little by little and then I started to realise it was actually going to happen – then OMG it set in – this was actually going to happen and this would be a turning point in our lives (we are really hopeful for a turning point for the better).

 

So whilst I don’t want Bella to read my Blog until she is old enough to understand, I asked her if she wanted to write a Blog about her thoughts (her first post is titled Meet Bella and it’s in her own words which she typed herself - though I did have to help with some of the spelling).

 

Well, I was planning to write about how I felt initially after the decision was made but I’ve written too much already so I’ll have to save that for another post another day…

 

Sarah

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