Skip to main content

Walking a fine line

Some days I feel like I'm walking a fine line between being at peace with Raya having a feeding tube and being TOO comfortable with the simplicity of feeding her through the tube. (note: simplicity is not the same thing as ease :) Today is definitely one of those days.
Her lack of willingness and/or ability to eat makes it really easy for me to not feel like it's worth bothering to try to give her food. What's the point if it's just going to get thrown/smashed/smeared instead of eaten? She swallows some of it but lately, more gets spit out than goes down. Or it doesn't go in her mouth at all. Even things she's done great with in the past are getting spit out now, like crackers. Then there's the yogurt. Who really wants to clean up a mess like THIS multiple times a day:
 Lucky for me, she's totally lost interest in yogurt now so all she does is make a mess and say, "Yuck! No wannit!" when I give it to her. She's been saying that with pretty much everything lately. She asks for some of what we're eating and then when I put it on her tray, she tells me "Here, Mommy, nowannit." So then I think, why waste food when she has no interest in eating it and is just going to throw it on the floor or smear it into her hair?
The list of things she will eat & won't eat changes constantly. One day she's chowing down on cream of wheat and the next day (and every day after that) she wants nothing to do with it. There seems to be a complete lack of consistency with the way she reacts to things from one day (or minute) of the next. If she asks for something or seems interested in it, we let her have some, but just because she eats something once doesn't mean she'll want to eat it again.
She likes peanut butter now. At first, I gave her a biter biscuit to dip in the peanut butter. She loved it, but it kind of backfired on me because now she won't eat whatever the peanut butter is on. She licks it off and then puts it down and uses her fingers to scoop up the rest of the PB. I'm sure she'd prefer that I just give her a little cup of peanut butter to eat and not try to give her any crackers or anything with it. All she really needs are her fingers. :)
*Sigh* I just don't know sometimes. Eventually she'll get it but right now I feel like we're running around in circles.

Comments

  1. I know how frustrated you are! But remember ALL kids tube fed or not go through phases where they wont eat anything, or only one certain thing. Just try again the next day is all you can do. And luckily with Raya you know she is still getting her nutrition wether she eats or not:)

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …