So, since I'm already frustrated I will continue......I started giving Allie Ovaltine in her whole milk to boost the calories in it. We mix her Neocate formula (tube formula) to be 34 calories an ounce. The only liquid she consumes for calorie purposes is whole milk. Whole milk is 18 calories an ounce. Allie currently can only handle 4 oz of liquid at each bolus feed - so if she is drinking 2 oz of whole milk, we give her 2 oz of Neocate. Well, the whole milk is less calories so we are running into the problem of Allie not getting all of her calories required per feeding, simply because she can only handle 4 oz of liquid and the whole milk isn't high calorie. So, I added Ovaltine which ad's 10 calories per ounce. Great.....it was working. Then I found out from my friend that Ovaltine isn't gluten free. I checked into the Carnation Breakfast which is gluten free but contains corn - yeah!
I finally decided to call our Dietician today to see what she recommends we do because the whole milk is just not enough calories so I need to add a calorie supplement to the whole milk. Allie's weight has dropped slightly and I know it's because she's not getting all of her required calories. When we met with the Dietician before, Allie's new calorie goal was 1100 a day. She is only getting 800 on a good day. Even if we don't give her whole milk and just feed her Neocate as our current feeding schedule is, she is only getting 850 calories a day - that isn't enough.
Allie is currently handling her feeding schedule pretty well. She has occasional random vomiting but nothing unmanageable. So, the Dietician doesn't want to increase her feeds much because she doesn't want her vomiting to increase AT ALL! Our dilemma....how do we increase her calories without increasing her tube feeding intake???? Here are our options:
1) Try using a calorie supplement called Benecalorie. This is a powder that is mixed into food. downside - Allie isn't eating much food so it won't be the most effective.
2) Try using a calorie supplement called Beneprotein. This is a powder that can be mixed into liquids. downside - Allie could only use this once a day because the Dietician doesn't want her to get too much protein.
3) Try using a straight up fat called Microlipids. This can easily be added to her bolus feeds. downside is it's very expensive
4) Try using MCT oil. I don't know anything about this yet.
The Dietician is going to mail us a sample of the Benecalorie and see if we think it will work at all. In the meantime, she is going to do more research on the other options to see if they would be better for Allie. I also told her that we would bump up her night time pump by 1 cc per week until we get to 35cc and hour. Allie is currently at 30cc an hour. Previously, Allie could never handle more than 30cc/hour or she would vomit. Last night we raised it to 31cc/hour and she was up a fair amount because she was uncomfortable. We'll see what happens tonight. I am tired of pushing the limits with her stomach volume - nobody wants to see their child vomit because too much milk was put into their feeding tube.
So yeah I'm frustrated - but it's nothing too bad. This is just one more hurdle to overcome. The Dietician had talked to us about calorie supplements when we met her but Matt and I decided to not go that route quite yet. Of course, it's one step in the wrong direction for getting Allie off the tube someday, but I finally see we are at the calorie supplement hurdle and we will deal with it. On the bright side....Allie's little mic-key button that she is so proud of is continuing to save her life. Honestly, she isn't ready to get rid of her button quite yet - she loves it (doesn't like the feedings but likes her button) so we plan to hang on to it for a while!
Here are a couple pictures of the girls.
|Allie so fascinated with the washer|
|Chloe eating corn dogs and french fries at the water park|
|Allie eating her favorite food - a pickle!|