I had my feeding team come today for a visit. They include a dietitian, an OT and SP. They have been working with Wysdom since he came home from the hospital after birth(about 2 months of age). They have been pretty conservative in regards to his feeding. Prior to his OHS in May my OT worked on fine motor skills. They didn't want to push him or try anything until after his surgery.
So fast forward to post op. They have been coming to visit us and trying to see what Wysdom will do orally. (To recap from an earlier post. he breastfed and bottle fed for the first month and for the remaining 7 months he spoon fed a little and has an ng since birth). So since OHS the plan was to try to get him to eat orally while he has his ng in. At their instruction I have focused on starting cereals and fruits/veggies. For the last month we have worked our way up to eating cereal twice daily with a little fruit or veggie added. There has been really not talk of introducing liquids orally though. So I just assumed once we got the solids started that we would turn to the liquids.
So here comes my frustration!! So today I mentioned to them again that I have an appointment this week with a GI doctor re: a g tube. I have had this appointment since prior to Wysdom's OHS. I asked them what they thought we should do. The sp said that "in 6 months time she doesn't see him taking in all of his liquids needed and that she is not confident that he could be tube free". So my frustration is that yes we have been focusing on cereal...but why are they not helping with liquids. Today I had to ask them to give me some ideas of next steps and a possible sippy cup to try. It seems like they have made up their minds before even giving it a try. Ugh. I was very upset today. They haven't watched him try to drink, haven't suggested ways to get him to drink. They have just been talking about how much cereal he is eating and what foods. Today I think if finally hit me that they really are not doing much to help us at all, besides writing down his volume of cereal and how often he eats.
Sooo....I am a little stressed out and frustrated and upset with the whole feeding thing. Really I am not upset at Wysdom of course...just the whole process of it all. To think I have waisted all of this time meeting with them weekly and they have made up their minds already before they have tried anything. As you can see I am very emotional about this. I have now decided to do as much work myself in trying to teach him to take liquids. I am going to do my own research on what steps to take and what works and doesn't. If in the end he needs a g tube, so be it. At least I will know that I have tried.
So if you have any experience around feeding or just have a story to share I would love to hear it. If your child has a g tube, I would love to hear how that is going and if you are happy with it because it may become a choice we have to make. As well I am looking for info on sippy cups that you may have chosen to use? I have heard mixed reviews about using sippy cups in relation to oral motor development.
In all of this, Wysdom tried squash today and I think he actually liked it....he only spit a little bit out=) Thanks for listening!!