Big news (I will duplicate any tube weaning updates via this blog and our personal blog).
Had the appointment today with Sophie's feeding psychologist and dietician.
Today we have started to tube wean Sophie.
OH. MY. GOODNESS.
Before you freak out, we wont be going guns blazing and just cut off her tube milk completely though, it will be a gradual process. Sophie has 5 bolus milk feeds throughout the day via her tube.
The first that we have culled is her teatime feed.
We will try this for one whole month to see if it will trigger Sophie to associate that eating food will cure the hunger sensation. If this is successful then the next to be culled will be her breakfast feed and so on until no tube feeds left.
This is not going to be an easy ride, currently Sophie gets very cranky when she is hungry and wont normally settle until she has whichever tube feed she is due.
ALL of her nutrition has been via her tube for nearly three years!
Monitoring her weight is going to be important and I will do that each week and then speak with her feeding team for a progress report. I am so glad we have them on board, I trust them immensely and I know they have Sophie's best interest at heart.
There is no concern with potentially losing some weight as she currently has a fat supply that would put a hibernating animal to shame :)
Obviously bowels are another area that will need to be monitored closely too. They will also liaise closely with Sophie's CF team and bloods will be monitored if deemed necessary.
I cannot emphasise how hard this whole process has been.
There have been lots of tears and heartache.
Until you have a child that would rather go to sleep and become unconscious than try a tiny morsel of food, I guess you will never fully see how difficult this has been for us.
I know it is going to take time, there will be huge set backs, there are going to be days where it will seem easier to just give in and tube feed, there are going to be days when we have to go back and tube feed, but I am excited.
I am nervous.
I am apprehensive.
This has to be tried though, for Sophie's sake.
So this is it, the beginning of the end hopefully. The end of one of the hardest battles I have had to endure with my daughter so far.
I hope you stick with us, I know we are going to need lots of positive energy and would love you to join us on this huge journey of attempting to convince my three year old daughter that eating is enjoyable!
Day 1 pictures.
Take care all
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