So, yesterday was day 4 of Allie's first attempt to wean her off the feeding tube. I have to say this is going much better than I anticipated. I also have to say this is much more work than I anticipated. Of course I am not just stopping tube feedings and hoping Allie will eat. This wean entails stopping Allie's tube feedings but also being diligent and adamant in trying to get food into Allie's mouth (and having her swallow it). We do not sit around the supper table as a family and relax, this wean is a constant battle and there is no relaxation around the table or anytime it comes to food. I am very proud of how well Allie is doing. She is eating more than I ever expected.
It seems as if Allie likes to drink most of her calories. The only liquid besides water she consumes is her elemental formula Eo28 Splash which is 30 calories per oz. Allie drinks her Eo28 Splash out of a sippy cup with a straw and it's a comfort item for her. I'm still not convinced that Allie drinks because she is thirsty, it's simply a comfort item and she drinks her Eo28 Splash when we are driving in the car or when she is watching cartoons. Besides that, Allie rarely drinks at all. She can and will drink out of a regular cup but she will only consumes maybe 1 tsp of the liquid. She does like apple juice but when I give it to her in a regular cup, she only drinks a tiny tiny bit.
We were camping over the weekend so it was hard to track Allie's food since I wasn't the only one feeding her. She ate okay but not nearly as well as Thursday (first day of the wean). Over the weekend, Allie drank a lot of her Eo28 Splash while riding in the cart behind my bike - she likes to drink her milk when she's moving. She rarely ate a meal for us but did enjoy a good portion of a corn dog and some chicken nuggets so that was wonderful.
Yesterday Allie ate okay - not quite as good as before. Here is the breakdown of her oral intake:
10 cal - Cereal
120 cal - Eo28 Splash
70 cal - gummies
20 cal - taco & cheese roll-up
30 cal - chicken finger & french fries with ranch
330 cal - Eo28 Splash throughout the day (after breakfast)
580 - TOTAL CALORIES
I tried so hard to get Allie to eat more of her taco & cheese roll-up but she was done. We went to Arby's for supper and Allie was excited to get chicken fingers but when she got the food, she would barely take a bite. It's still VERY frustrating watching my child refuse to eat when I know she has to be hungry!!
So far today, Allie's calorie consumption is low but I'm hoping it picks up this afternoon. We are now letting her watch TV (from the kitchen table) while she eats her meals. We are hoping this keeps her entertained at the table a little bit longer so she stays and eats with us. It's working a little bit but not as well as I was hoping. I know watching TV while you eat is not a good idea but right now we are trying anything possible to get Allie to eat.
So far, Allie has showed no reactions to stopping her tube feedings and like I mentioned in my first post, it doesn't seem to have phased Allie that she is no longer getting feedings. She still asks for them (when she doesn't want to eat) but I simply tell her that she no longer gets them. Her energy level has remained high so that is a great sign. I have given her some water shots in her tube throughout the day to make sure she stays hydrated. All and all, things are going wonderful. For me, it seems extremely strange not to be giving her feedings - but it's definitely something I could get used to :)