Skip to main content

One year ago today...

One whole year. That's how long it's been since Raya did this:
It's pretty crazy to think about someone not eating or drinking ANYTHING for a whole year. (with the exception of a few small amounts of baby food and barium that have been forced on her a few times) There have been times when the fact that she refuses to eat has really gotten to me. It's hard to explain how it feels to know that your child is incapable of doing one of the things that is most essential to sustaining her own life and has absolutely no desire to. I get asked frequently if we know how long she'll have to have the feeding tube. The answer to that question is a big fat no. We have NO idea when she'll be able to get rid of it. It's completely up to her. When she can eat enough calories, drink enough fluids, and take all her medications by mouth, THEN we can get rid of the feeding tube. How long that will take is anybody's guess.
Having said all that, there are perks to not having to feed her like a regular kid. Maybe I shouldn't admit that I feel that way but it's true. :) I don't have to worry about her getting food stains on her clothes. If she was an eater, she'd be at the age where she wants to be independent and feed herself but isn't quite coordinated enough and I don't have to clean up after that. I don't have to hose her down to clean off layers of food before I can take her out in public. I don't have to think about what I'm going to feed her for breakfast, lunch or dinner. I don't have to take up room in my diaper bag packing snacks (although sometimes I wouldn't mind having snacks in there). I've probably saved a lot of money on baby food, which probably offset a small portion of her medical expenses for last year. :) And last but not least, I've learned that no matter how much I want to control my own life, there will be parts of it that are completely out of my power to control, and that those are the parts of my life that God is in control of.
I was thinking about when I wrote this post about how frustrating it was to try and feed her baby food when she didn't have any intentions of eating it, and how inadequate it made me feel as her caretaker that I couldn't make her eat. That was about 8 months ago, and I guess I've grown since then because I don't feel bad about it anymore. I have little moments that get to me when I'm caught off-guard with something, but Raya not eating doesn't bother me anymore. I'm at peace with it and no longer feel the need to control it because I know that when she's ready, she'll eat.
I've also been thinking about how we got from a baby who would drink most of her bottles to a 17 month old who eats/drinks nothing. I don't know if people realize this but it was by choice that we stopped feeding her by mouth. Last April, we (me, Donny and Raya's doctor) made a decision to stop oral feeds. We had a couple of reasons for doing it. One was that we were concerned that she was aspirating while she drank bottles (getting formula in her airway) and we didn't want to put her at greater risk of getting aspiration pneumonia. The second reason was because none of the things we had done with her feeding schedule up to that point had reduced the vomiting, so her doctor wanted to try doing a long continuous feed with the pump hoping that it would be more gentle on her stomach. At that point, she was drinking a good percentage of her feeds but the amount she was drinking each time was going down and the number of feeds that she refused completely was going up.
Even though I do sometimes wonder if or how things would be different if we had kept her on oral feeds, I have no regrets about pulling her off of them. Because I have sought out God's guidance in the decisions we've made about Raya's treatment, I have never needed to second guess the things we've done with her. We have made the decisions we felt God wanted us to make and I'm grateful for the peace that knowledge brings.
And just because she can't eat doesn't mean she can't feed herself. I had turned off her feeding pump and unplugged her a couple days ago and then a little while later, she walked into the kitchen like this:
It's hard to tell in the picture but the little smarty pants had plugged her feeding pump into the G tube extension tube and was dragging the backpack around behind her. :)


Popular Posts

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…

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…

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 …