Wednesday, July 20, 2011

Day 28 - Tube Weaning

28 days of bribing, rationalizing, pleading, crying, requesting, and down right begging Allie to eat.  Emotionally I am drained and ready to quit.  This tube wean is brutal and I know how I feel and I can only imagine it's worse for Allie. 

28 days of no tube feedings and Allie STILL doesn't want to eat.  She is eating here and there.  It seems to go in spurts with no rhyme or reason.  Since we are now only allowing her milk at the table, her milk (E028 Splash) has decreased dramatically.  She used to consume 12-16 oz a day orally and now she is consuming less than 8 oz of her milk.  Allie will almost always eat Go-gurts, applesauce or pudding but she cannot live on those items, they are not nutritionally complete for her.  We continue to struggle with getting her to the table to even see the food.  For example, this morning she wouldn't even come to the table for breakfast.  I asked her 6 times to come and eat and she kept saying, "I don't want to eat".  I told her there will be nothing to eat or drink until 10:00 which is snack time and she said, "okay".  So, Allie hasn't eaten or drinken anything since 8:30 last night and she doesn't wake up hungry or thirsty AT ALL. 

Allie goes in for a weight check tomorrow and I'm anxious to see how it goes.  I have been weighing her at home and she is down a little.  I'm still surprised that Allie's weight hasn't dropped more because her calorie intake is very minimal.  I have noticed that Allie's energy level doesn't seem to be affected by her calorie intake.  She is just on the go continually even though she isn't eating much at all.  Seems as if Allie doesn't need food and liquid to keep going  She's like the energizer bunny and just keeps going and going and going!

So 28 days has flown bye yet the individual days seems to stand still.  Convincing Allie to eat has been much harder than I ever imagined.  However, she is eating a little and for that I am very thankful.  I know this tube wean is not easy on Allie and quite honestly I think she is tired of it.  Seems as time goes bye, she wants to eat less and less.   Tired or not, we will not give up.  I am determined to help Allie eat and a little frustration and exhaustion will not make me stop.  God has chosen me to be Allie's mom because he knew I would do what is best for her and I will not let him down.  So, little Allie, we will chug along and continue with this wean until it is unsafe for you.  The minute you lose too much weight or anything else becomes a concern, we will start your tube feedings immediately.

So, for now we continue to tread water and hope to stay afloat.   The plus side, Allie is eating a little and there is no doubt she enjoys her snacks!!!

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