Thursday, July 14, 2011

Day 22 - Getting more difficult

So, today is day #22 of Allie's first tube weaning attempt.  There has been a lot of things happening on our end and two huge things I've noticed within the last week are:
1) Allie is consuming 85% of her calories orally by liquid and not food :(
2) Allie will not eat a meal with us - she's only consuming snack throughout the day.

Of course I have never attempted to wean Allie from the tube before so I feel like I jumped into an ocean by myself and I'm barely staying afloat. Allie's doctors are not really helping me - they are just monitoring her progress.  Allie's doctors are scattered and as many of you know, getting doctors together to talk about your child's care is almost next to impossible unless they are all in the same building. 

I finally emailed Allie's Dietician this morning asking for advice.  My concerns were as follows:

1) Allie is consuming most of her calories via liquid (E028 Splash) and she is currently having her sippy cup throughout the house all day.  We don't limit when she gets her cup.

2) Allie is refusing to eat all meals at the table but continually ask for snacks.  (yogurt, pudding & applesauce).  I have been allowing her to have snacks since I'm trying everything in my power to get her to eat orally.  Should I continue letting her have snacks or should I not?  I of course want to wean Allie off the tube, however I also want her to learn good eating habits.

I just heard back from our Dietician and this is what she recommends:

"1) liquids ONLY with meals and only AFTER she eats (or attempts) to eat a meal.  It will take time and patience to get thru this. Don't overwhelm her with a lot of food at one time as it may turn her off.
You have the tube to make up the extra liquids that she may not drink b/c you're working on her behavior; but she needs to learn some new and healthier habits.

2) meal structure; structure is important so I'd recommend you offer her the usual meals and then only snacks in between meals and try and leave at least 2 hours between the snack to next meal if possible and no fluids in between. Goal is allow her stomach time to empty and stimulate hunger."

This is what I thought she would recommend and in the back of my mind, I know it's the right thing to do.  I have been pondering these issues for several days and yesterday I actually went with my gut and only allowed Allie do drink her milk at the table during mealtime or actually anytime she wanted a drink (which was never).   To sum up how yesterday went, Allie consumed next to nothing.  She barely consumed any milk and she ate 1/4 of a egg salad sandwich, 5 bites of pizza and part of an ice cream cone.  She didn't get near her 1000 calories a day.  With these new changes, I'm anticipating her calorie intake is going to drop significantly but I'm hoping she proves me wrong.

So, in a way, I feel like I'm starting this weaning adventure all over again.  These two changes (her milk at the table only & limited snacks) is huge for her.  

My motherly instinct is still continually telling me that Allie doesn't feel "hunger".  She barely ate anything yesterday and yet this morning she wouldn't even take 1 bite or 1 drink of milk. 

After witnessing her eating habits for the past 3 years, everyday I'm still AMAZED at how our little girl just isn't interested in food.  Sure wish we could figure out why! 

Allie enjoying the water (& mud)


  1. Oh Jodi!! I wish there was something I could do to help you all through this. You are a strong woman (trust me I know from experience of growing up with you LOL) and will get through this. I love ya and if you need to talk give me a call.

  2. I'm so proud of your dedication to your girls. I know you're going through more than the normal kid stuff but it's always a tough road with kids in some ways. I've always told people that raising kids isn't so much difficult but time consuming. I realize this as I read your posts. If you care about your kids it takes an incredible amount of time to see to all their needs and education. But it's sure a fun road too. Lori C