Wednesday, June 15, 2011

NG tube weaning

I hope you all are enjoying actually hearing from us again. It has been fun having the time to blog here and there.  I realized I had been avoiding blogging because I knew you all would like to see pictures and videos.  The reality is:  I haven't wanted to take pictures. 

It was depressing for a long while, and still is sometimes, that Clara still has a tube taped to her face.  There is so much "normal" to report in her development.  But if I took pictures, the tape that I know how to look past most of the time stands out horribly and blocks half of the cute face that I see.  When you want to brag about your daughter, and then are literally faced with the image of what she is still struggling with, it is hard.  I know you all would say we don't care.  And while I was proud of her, I was frustrated by how little progress I had made with her and her eating. 

That has changed significantly over the past two weeks.  Clara swallowed food for the first time two Thursdays ago.  I had decided that, since we don't see OT and they keep telling me to just keep exposing her to new flavors and textures, I needed to actually get back to what many people know to be my MO and begin researching for myself to determine what steps needed to be taken to ensure progress.

I made several determinations.  She wasn't as close to eating on her own as I thought (which relieved a large amount of pressure associated with "she's so close").  She was getting to a higher likelihood of having difficulty digesting table food the longer she stayed on a formula-only diet.  She was not struggling with any of the aversions to food nor did I have concerns with her swallowing ability (at least not nearly as severe as what was described in what I read).  The biggest piece: she needed to be in her highchair for every feeding (within reason) with food and/or eating utensils in front of her so that she would begin associating those things with fullness.

It began working.  She has had some staple favorite foods for a while that she had seen enough times and that she had enjoyed gumming on.  I continued to give them to her and add a new something here or there as she showed interest in what I was eating or simply to offer her diversity through foods that were similar in some ways to what she was familiar and comfortable with.  I showed her how to paint with her food on her tray and then lick her fingers (she trusts her own finger more than a spoon coming at her face).  We "painted" her fingers or a toy with a new food or new taste.  We would gasp with surprise and then she would lick it.

In the past two weeks, I have continued offering her new foods and am having to spend less time praising her and actively encouraging her throughout every step of the meal.  She may tire of a particular food and I will have to bring out another but she plays with food for a full 20-45 minutes 3-5 times a day.  She gets excited about being put in her high chair.  She says "na" if I offer her a banana.  She loves the sight of an eggo waffle headed to the toaster.  She can sign "all done."  She loves strong flavors and doesn't like mealy textures like applesauce or oatmeal or too many dry crumbs in her mouth at once.

All in all, she is liking food.  Slowly she is learning to swallow the food.  Hopefully within a couple of weeks, she will be consistently eating and drinking enough that I am just providing supplemental formula based on what she didn't eat but was required calorie-wise for that feeding.

She is getting a little bit less camera shy and beginning to put on smiles for me instead of going stoic.  Perhaps I will be able to pull out the video camera soon without her seeing and stopping whatever activity I was trying to capture.  It is fun to share her with all of you and I look forward to doing so more and more.

No comments:

Post a Comment