20 Calories per Ounce

This is the calorie level that we were at in May of last year. We then increased to 25 cal then a few months later we went to 30 cal. She seemed to tolerate the 25 cal, but never really did that well at 30 cal. We had about 4 months of high output that we tried to blame on everything else. But then this February we decreased back to 25 cal and she started to do better. This takes us to this May, and our hospitalization for a GI bug. We were discharged on 20 cal with instructions to increase the calories over the next few weeks.

We never did increase. Ellie’s output was lower than we had seen in half a year, her urine production went way up, we were able to double the rate on her enteral pump and she started to have a real interest in more solid food. We knew she was doing well but we were sure we were going to get our hands slapped at clinic for not increasing.

But, they were so excited by her progress they said don’t change a thing. Our nutritionist said that because Ellie is getting less calories from her formula her body is now making the effort to get what it needs from her solid food. Typical kids move from formula/breast milk to whole milk (18 calories per ounce) at the same time they start to really eat larger amounts of solid food.

This seems to be what Ellie is doing. So now Gib and I have been desperately trying to figure out what and how much a typical child should eat. What seems to work for Ellie is a diet centered around protein and vegetables. She also gets a small amount of carbs and fruit. The only fruit she gets is small amounts of the high fiber fruits and only fresh; bananas, blue berries, blackberries, and her favorite.. strawberries. The only thing we don’t give her much of is dairy; she still does not tolerate it very well. But, snacks are always a struggle; we are always searching for good snacks. If anyone has a good ideas please let us know.

We are very excited by her progress but, almost everyday we want to kick ourselves for not trying this earlier. It is really hard to look back at everything we have had to go through over the past year+, and wonder what we could have avoided by decreasing her calories sooner or by never increasing in the first place.

Live and learn I guess, right? Right?

It is blue berry season here, so here are some shots of our last two trips to the patch.

Ellie and one of the many blue berries she ate that day.

Ellie and Daddy checking out the apples on the way to the patch.

Ellie getting a piggy back ride back to the car.