I'm writing this at 9:30 in the morning and baby girl is happily playing instead of sleeping. We started a hunger led tube wean and initially cut feeds by 30% and honestly she just acted more comfortable. I would feed at noon and just before she would get hungry and take an ounce or two. The most she has taken is just under 3 ounces. We cut her night feed from 10 hours to 7 and skip her 9 am bolus. She gets four bolus feeds during the day and then continuous at night. She's not even grumpy. Last night she pulled her tube and I heard her tummy growl at 8 pm for the first time, I tried a bottle but she was too tired to be interested (within minutes her feeding tube was in and she was being fed).
We were adding a thickener to her milk (thick foods are easier to swallow). It was a gel and I have some serious concerns about it's safety. We are now using rice cereal and she seems pretty happy with it. When she wants it she can down an ounce in about 2 minutes without any signs of aspiration.
Today starts a cut of 50%. We tried offering food this morning and she took a few cc's but nothing substantial. We are still recovering from a poor speech therapy session. For parent's of tube fed babies DO NOT EVER let a speech therapist touch you babies mouth until they have explained what they are doing and you have set parameters (no experience with heart kids). 10 minutes was all it took and Adelina will not let us put food in her mouth or near her mouth, luckily she will put it there herself. Adelina LOVES pretzels in any form and pears seem to be a hit or miss favorite.
Update: Adelina did not pick up eating so we stopped and went back to regular feeds.
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