Day 1 of Tube Wean

Heidi, our feeding therapist, arrived today!  Sam and James were so excited to meet her and she became their new best friend instantly.  Today was mostly just a day for Heidi to get to know the boys and figure out what strategy is going to work best for the boys.  We started cutting their calories last week and they are now down to 50% of what they would normally get.  Today we cut out an additional tube feeding because Heidi felt like they needed to start feeling a little more hungry in order for them to have the desire to eat.  As a mom it is so hard feeling like I am depriving my children of something they need and purposefully making them feel hungry, but I know that it is what has to be done and it will hopefully pay off soon.  The boys also missed their nap today, so that only added to their discomfort and boy were they grumpy!  They were fine all morning, but after we cut out their 2pm feeding they just lost all energy and were so unhappy.

Heidi got to our house around noon and we played outside, did sidewalk chalk, and had some snacks. We had strawberries and crackers, and Sam actually loved his strawberry!  He sucked on it for quite awhile, longer than he's ever tasted something before.  We also had yogurt but that mostly just got thrown everywhere.  Heidi left after about an hour, then came back for dinnertime.  By that time, I think they were starting to feel really hungry.  Sam threw a big tantrum and didn't want to sit at the table with us, but James did.  He played with some chicken and vegetables but didn't put anything in his mouth.  Then we got some chocolate milk out for him and he went to town!  Most of it was all down his shirt, but he probably drank a whole ounce!  That is amazing!!!  He has not drank that much in years!!  Sam also drank a little bit of chocolate milk, and that was about the extent of their eating today.

They did so well today, I was really impressed and so was Heidi.  She thinks that they are going to do great, and that makes me so excited!  Their progress today was more than I could have hoped for on the first day.