Tuesday, September 13, 2011

Update on GI

We had an appointment with our gastroenterologist (GI doctor) today. I really like that he supports me and my efforts to give Sadie the best and most natural nutrition available. He understands that I would rather give her whole foods than formula, and he sympathizes with me in wanting to have her be medicine free. However, I think he might think I'm a little crazy too! haha

It's funny that I even have to bring Sadie to these appointments. It seems like we'd accomplish so much more without her there to scream while we're talking and be such a distraction! I know, I know, they have to weigh her, and the doctor wants to physically see her and make sure she looks healthy. Plus this is the first time he'd seen her since she's had her G-tube placed. I also like this doctor because he is so positive. The first thing he said when he walked in the room was "Wow! Her weight looks great!" He told me that Sadie is at her ideal weight for her height. I told him I think she got her Daddy's metabolism, so she'll probably be at the ideal weight for her height her entire life! (lucky ducks)

We also met with a nutritionist at this same appointment, and after some discussion about blenderized diets and oral feedings, she suggested a new kind of formula. It's called Nestle Compleat. A friend of mine had recently told me about this formula, and I was going to ask to be switched, so it was great that she suggested it first! Basically this is food-based formula (as opposed to the synthetic stuff we're giving Sadie now) and it will still provide her with complete nutrition. It's like a blenderized diet without having to do all the work myself.

We had a long conversation about Sadie's oral feedings also. There is a calorie goal Sadie needs to reach everyday (750-800) and a liquids goal she needs to reach everyday (1000mL), which are both met when she is completely tube fed. However, when she gets food by mouth, these things are thrown off a little. When I feed her by mouth, I always try to pump through her tube at least 3oz of water (90mL), but I can't control her calories. And the nutritionist tried to tell me I still needed to make sure Sadie's getting enough calories and I told her that it's unreasonable to expect me to do this. I can control her fluids intake as much as possible and pretty much guarantee 1000mLs a day. But if she's eating by mouth 5-7oz of food, I'm not going to also give her a feed to supplement...I'm just going to call it good and move on. They both said, just keep encouraging food by mouth, do your best, and if when she comes back she's not gaining weight like she should, we can discuss it then. I was satisfied with that.

A vitamin was also recommended for Sadie, which was another thing I was going to ask about. But what was recommended is made by Enfamil, which I don't totally trust. I plan on finding something comparable and starting her on that as soon as possible.

Then we talked about reflux. I have been doing some research and learned that aloe vera tablets/concentrate can act as a natural proton pump inhibitor (ppi), which is what Sadie takes prevacid for. Basically a ppi reduces the production of acid made in the stomach, which then controls the amount that travels back up through Sadie's esophagus, causing the reflux spit up and probably some burning. I found aloe vera concentrate at the store where we shop, and I bought some, but I haven't started it yet. It is advertised on the bottle though that it is used for digestion and upset tummies, so that is encouraging. I mentioned this to the doctor and the nutritionist and they basically laughed in my face. So, I told the doctor (in not these exact words) basically that I would like some information on how to wean Sadie off of the prevacid because we're going to give the aloe vera a try. And if it doesn't work, fine, but at least we tried. He explained to me how to wean her and then said he'd like to do some more research on aloe vera. He understands that I am mom and what I say goes, he's just a doctor and I will consider what he has to say, but I may not take his advice, and I appreciate that. But I really really really hope it works! The good thing about testing the aloe vera is that I can't hurt Sadie in the process, it's not like medicine where I can OD.

Overall we had a good GI visit and everything seems good. We'll wait another 6-8 weeks and we'll trek back in there to give him our aloe vera experiment results!! In the meantime we're going to pray and hope that those last teeth break through and that Sadie continues to eat by mouth. And we're going to start giving her more food-based nutrition!

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