|Posted on July 10, 2011 at 12:55 AM|
Well we’ve been tube feeding for one month now so I thought it was time for a progress update. We started off with slow feeds at 20ml an hour rate through the pump and then slowly increased rate over a couple weeks until we have now reached a feed rate of 90ml an hour in which she is tolerating very well. We are only feeding through the night by pump for 10 hours – 2 continuous 5 hour feeds of 450ml each which is 900ml a night. A little bit short of our goal of 960ml a night but she is about ready to burst when she wakes up in the morning with her being able to taste the water when we flush the tube after the feed so we are leaving it at 900ml for now so as to not push it too far and have her vomit!
We haven’t done any bolus feeds yet as she is still eating her regular amount of food and sometimes drinks a Neocate during the day too. In the first week of tube feeding she had to be weaned off drinking a Neocate during the night – she would wake up and want one and I’d have to remind her she was having it through the tube! It was a habit formed over the 6 years where she would want the Neocate for comfort sake not just for nutritional need so whilst now we still encourage her to drink a cup of it so she doesn’t lose the taste tolerance for it, she is no longer asking for it for comfort sake. This is another bonus as she is 8 years old this month and a little bit old to be demanding milk when things aren’t going her way or when there is chores/homework to be done! We didn’t really have much choice before as we needed her to have it whenever she would because of her constant battle with failure to thrive.
Last week we went to the dietitian for our first review post tube and Bella was 18.1kg so we have had some small weight gain already! The other thing we’ve noticed is the increase in her energy levels – it has been astronomical the difference in her, especially with being on school holidays and we have been on the go a lot with activities and having family visitors and for the first time in her life she didn’t need constant rest periods with Neocate to give her energy boosts. Even though she is still eating only small amounts of food the 900ml at night just gives her the energy to last the whole day and she wakes up practically jumping out of bed when she used to wake up still tired (she is also jumping out of bed to rush to the toilet, the only downside of having 900ml a night!).
The last month has been a time of big adjustment for Bella. Her anxiety has been heightened and she has been constantly worried about the button falling out, leaking etc. but thankfully she’s slowly getting more comfortable with having the button. For the first couple of weeks she wouldn’t even walk straight, or look at herself with it and was showering with her eyes closed so as not to see it, it was heartbreaking. Now just within the last week we’ve had little breakthroughs of acceptance, like she walked from her bedroom to her sisters the other morning carrying her own pump next to her (before that she would just yell out for attention refusing to move from her bed when being fed). Then just yesterday I found this cute little drawing she drew of herself wearing a t-shirt that says I HAVE EE and she drew her button and a tube going to a pump and she wrote this little note next to it “Sometimes people can have tubes. Me I’ve got a tube it’s not that bad. If you have EE you might need one”.