Well, the first day didn't go to well, as follows...
9am - 30mls EBM orally
10.30am - 30mls EBM orally
Midday - 10mls EBM orally then 100mls water down NGT.
3.00pm - 15mls EBM orally
I gave up for the day and gave her a full feed down the NGT at 5pm and again at 9pm. At 11pm she vomited everywhere and has since been to the Dr - she has a chest infection! Seems I picked the wrong day to start .
I will try again in a week when she is off of the antibiotics and feeling better.
Good Luck hun!! It is a real bugger that once they have been on the NGT for long periods of time the realise that they don't have to work to feed so they get lazy as they know that eventually the food will come. But sometimes without it they just don't put on any weight.. damned if you do and damned if you don't
We eventually managed to get our son off the NGT at 25 months!!! He had had lots of heart surgery and was a very complex case so it was hard for him.
I was pushed to go for a PEG but didnt want more surgery and more of a reliance on yet another artificial feeding port.
I did what you are trying to do - basically stopped using the NGT during the day but still used it at night (do you use an overnight pump?) and then reducing the length of time of feeds overnight and then the amount of feed overnight until basically I stopped using the bloody thing. Another thing we did was actually take it out (against medical advice!). I was convinced that the tube was causing a lot of his vomiting (6x day projectile) and that it would be more comfortable for him to eat and swallow without the tube in.
I gave myself one week without it as a trial, he lost 250g that week (I cried a river as he is then and now still on the 3rd percentile of the growth chart). The tube stayed out!
We only put it back in 18 months later when he was too sick again with his heart to maintain his own body weight and so the tube came back when he was 3.5yrs old for two months before more heart surgery and then one month after as well.
How are you going with it now? Is she over her chest infection? What do her Dr's and speechy say?
Our little girl Emily is almost 6 months and still on an NGT. She has a heart condition also - Tetrology of Fallot and due for Open Heart Surgery repair before the end of the year.
She has stopped taking anyting via the bottle (only got up to 30mls) and we are also dealing with her throwing up if we give her too much. She is also now screaming through her feeds as if its hurting her. I'd love to try and take the tube out but can't afford her to loose any weight as they stil want her to put on a little more before they do the op.
Just want to ask how long it took for your bub to eat/drink better once you took the tube out? Are you glad you did it?
Our Pead. seems to think that once she has her repair done she will come good and drink on her own but we aren't so sure.
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