Last Wednesday we met with Ali’s feeding team again. She was supposed to have a feeding assessment done but Ali decided that it wasn’t a good day to try to take a bottle so no assessment! That was very frustrating! The feeding team was happy with her weight gain and her growth. She grew about 3cm in length in two weeks! The feeding team feels that in order for Ali to take a bottle she’ll need to start experiencing hunger. In order for that to happen we have to stop putting her on a continous feed overnight. The only problem with that is that she won’t get enough nutrition if we don’t feed her overnight. We have to start really pushing the volume of formula that she can tolerate during the day in order to cut out the night feeds. We also have to push her in terms of how fast she can take her feeds to give her time between feeds to actually feel hungry. We need to get her to tolerate 3 times as much formula in roughly one third of the time and that’s a tall order and a long process. We are in this for the long haul. Once we get her there then we can start pushing the bottle feeding more. For now we’re just going to continue to offer the bottle for practice and for fun (this in NOT fun).
We’re experimenting with a bunch of new bottles right now too and we may start thickening her formula to see if that helps at all.
It’s such a long process and the lack of progress in terms of bottle feeding is really frustrating a lot of the time but we are taking joy in the progress that Ali is making in other areas! She has smiled a few times now and has spent some time just hanging out on the floor kicking her feet and cooing. She also continues to work really hard on her occupational therapy and is making little improvements all the time.
We are blessed to have such a brave little fighter for a daughter. We love her so much and to see her finally enjoying some of her life is enough to make us keep right on fighting with her. I have a feeling it’s going to be a long fight.
