From 20 Hours to 5

When we were sent home from the hospital in August, Stella was getting fed from her feeding pump at a slow, constant drip for 20 hours a day. We could choose any 4 hours each day to be free from the tube and the pump but the other 20 hours our lives revolved around the dreaded "Kangaroo Joey" (the feeding pump that we have not-so-lovingly named Uncle Joey) Over the past  11 months we have SLOWLY worked our way from an ng tube to a gtube (no more pinning her down to shove a tube down her nose into her stomach at least once a week), from continuous feeds to small bolus feeds during the day and 10 hours of continuous feeds at night to 5 bolus feeds during the day where she is fed for 2 hours and off for 1 and finally to 5 large bolus feeds during the day that only last an hour and NO FEEDS AT NIGHT! 


David and I still have a love-hate relationship with Uncle Joey but it is nice to only have him take up 1/5 of our day instead of 4/5 of our day. 

Stella is still vomiting daily but it has reduced quite a bit and we haven't had a 12x vomit day for awhile.  It seems that the Alimentum formula is what she tolerates best but our ultimate goal is still to get her off of formula and onto a blended tube diet and eventually off the tube altogether.














Stella definitely understands the concept of putting food in her mouth and tasting/swallowing and we have made a lot of strides with introducing food. This past week she has loved sucking on watermelon, drinking water from a straw, licking a spoon of ice cream, tasting pizza sauce, and eating baby food. 


Prevoiusly when we have given her baby food we would do tiny tastes on a spoon just to get her used to eating from a spoon and to having food in her mouth. Last night we decided that we would try giving her actual spoonfuls that a child her age would eat and see how she tolerated it...

She did great! There was no gagging or vomiting and she ate over 10 spoonfuls of apples and bananas.

Today I received another phone call from Marsha Dunn Klein herself to set up our consult in Tucson. We will see her on Tuesday August 14th for our initial consult and she will help us figure out how to best introduce a blended diet and how to overcome our hurdles to get her to eat more by mouth! We would love to be able to say goodbye forever to Uncle Joey by the end of this year!!