Our ongoing challenge is to move Ellie forward towards eating like a typical two year old and getting away from the IV and tube feeds as much as we can. Tube feeds have their purpose but they aren't our goal for Ellie so we keep looking forward toward real food for her. To get from point A to an oral feeding kid takes a bit of work.
We have heard from other parents asking about what she eats and how so here is the rundown of the day for Ellie's feeding. All of this should come with the caveat that we 'cheat' a bit because of her ostomy- if we feed her something that gives her gas, or diarrhea, its effect is minimized because the ostomy is a great escape valve for both of these things. This will all change significantly when she is reconnected and has to deal with gas and other side effects of a varied diet.
Her feeding day is quite regimented and begins with her coming off the evening IV around 8 in the morning. The overnight combination of IV and g-tube feeding at 40 ml/keep her happy overnight and she still sleeps between 10 and 12 hours each night. Who says tube feeds are all bad?
As soon as she comes off the IV we give her a glycerin suppository to help her poop which usually works like magic. We'd like her to poop on her own but it just doesn't happen so most mornings we 'clear the decks' as soon as we can and open up room for more food. If we don't do this, we can be sure that her ostomy output will be increased for the day- if there isnt anywhere for the food to go it goes out the ostomy along with a lot of fluid. Remarkably her poops have good consistency, something that isn't all that common for kids with short bowel.
(pay no attention to the mess, Abby has her knee 'scoped on Monday and we are still in recovery mode)
Around 10 she comes off her G-tube pump. Since midnight she will have gotten about 3-400 ml of elecare through the tube which brings her to 4-500 ml for the day so far. Now we have a free kid until bed time.
At 11 she gets another 100 ml of elecare. 5-600 for the day.
between 12 and 1 it is time for lunch. Lunch means some cold chicken, ham or turkey, some cooked vegetables like peas, broccoli, green beans, or asparagus and some plain noodles or noodles cooked in broth. She also likes soup and will drink broth, which the nutritionists tell us is great for her. And another 100 ml of elecare. 6-700 for the day.
Nap time runs from 2 or so until 4 and ends with a second round of glycerin. Another poop around 4 and we are ready for a snack or third meal of the day along with another dose of elecare. 7-800 ml.
Dinner is a repeat of lunch. Meat, noodles, vegetables, and a final round of elecare that brings us up to around 900 ml for the day. Usually she a version of whatever we are eating, but if it isn't an Ellie friendly meal, then she eats her own food. And these days a bit or dessert- a couple of berries or a shared all fruit popsicle.
Then it is off to do the TPN routine, hook Ellie up to her g-tube pump and TPN by 8. After a round of stories she is usually asleep by 8:30.
Then we reset pumps at midnight, add up totals for the day and other than changing a very wet diaper at 4 AM because of the huge volume of TPN that it our day until we start it all over again tomorrow.
This schedule seems like it might take the fun out of the day but really we manage to have lots of fun in between all of these pit stops and the periodic feedings, dresisng and ostomy changes don't really get in the way of things. She is so good at being the patient these days that they are remarkably quick and we get on out way to having fun: