Skip to main content

Rough day for Raya

My girl had a rough day today. It started out fine but halfway through the first hour of church, she started to get wiggly as usual. I took her out so I could refill her feeding pump and try to get her to go to sleep like she's been doing. We started doing laps around the halls like we normally do and I thought she was starting to fall asleep at one point. Then the screaming started. She cried and screamed and squirmed for about an hour. Nothing made her stop, not even going into a quiet room and laying her on the floor. She was doing a lot of reflux swallowing and there were a lot of times when she stopped crying for a minute and then suddenly would scream and stiffen up and arch her back and cry. I felt bad for her. It didn't help that there were a lot of people around who kept walking past us and looking at her and saying things like, "Oh, looks like somebody's not happy." Or they'd touch her arm/leg/back (which she doesn't like) and say something to her. One lady walked past us and looked at us and then got a really smug little smirk on her face when she was walking away and I just wanted to kick her. She's walking past me probably judging me because my toddler seems to be throwing a tantrum, but really she's crying in pain because her intestines are inflamed and she might have an ulcer. People.
Anyway, Cole was giving a talk in Primary so I needed to stay for that but as soon as he was done, I took Raya to the car. The poor girl was on total sensory overload at that point (from aforementioned people who probably meant well) and as soon as we walked out the door of the church, she stopped crying and laid her head on my shoulder. Before we even pulled out of the church parking lot she had fallen asleep in her carseat. I brought her home and put her on a blanket on the floor in the living room and she didn't move a muscle until I had to get her up to go pick up Donny & the kids from church.
She felt better after her nap. She's had less drainage today but most of it has been a dark green color, which (I think) means it's been sitting in her stomach longer. Funny thing about bile, after it sits around for a while (like if I empty her bag into a bottle to measure it and then forget to dump it out for a while) it turns green. Anyway, she's hardly had any this evening which I suppose is a good thing. Who knows at this point.  When I changed her diaper tonight, she was laying on her back and her stomach was completely flat and maybe even a little sunken in, and her stomach has never been like that. She's getting skinny. Something's going on inside that little tummy. Looking forward to seeing the GI doctor tomorrow.


  1. Ever since I found your blog I have loved it. My 5 month old daughter, Lyla, had a GT-Tube placed back in February. Your blog has really helped me keep things in perspective. Raya is absolutely beautiful. I would love to e-mail you and ask you a few questions, but I don't know how to go about it. My e-mail is
    I would really appreciate you taking the time to talk with me. No one else I know has any idea what it's like, and it would be nice to have someone to talk to.


    Rachel C.


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 …