Skip to main content

The anxiety is mounting...

I think the longest I've been away from her was about 6 hours during the day, and she was at home with Donny during that time. As is probably the case with a lot of moms of kids with special medical needs, I have not been away from Raya overnight since she was born. That was 702 nights ago. (except for the 3 nights that I slept at the Ronald McDonald House across the street from the hospital but that SO doesn't count!)  702 nights of waking up to either a crying baby or a beeping feeding pump or both. Or kicking Donny so he'd wake up and silence whatever was making noise.
Lest you should feel sorry for us, there have been plenty of nights with several hours of sleep in a row, but there has not been a solid, full night's sleep without having to get up at least once since the girl was born. Thanks to Raya's overnight activities, I've never felt like I could leave her overnight. I've had a hard time asking anybody to watch her for an hour, let alone overnight.  It's a LOT to ask of someone and I just never felt like I could do that to anybody, not that people were lining up to volunteer for the job. :) Heck, I hardly even made Donny do any of the middle-of-the-night medications or anything like that just because I was afraid that we'd end up screwing it up if one of us wasn't specifically "assigned" to do it. This is not to say that he never helps because he does take care of her night feeds quite often when I fall asleep on the couch at 9:30. He has saved my bacon plenty of times.
The 702 night streak is about to come to an end though. Tomorrow morning, I'm surprising Ashtyn with a weekend trip to Idaho for her cousins' baptisms. She has NO idea (neither do her cousins) and I'm really excited about the trip. The excitement is very much mixed with anxiety though. I've never had a problem leaving the other kids, but Raya is a whole other ballgame. There are a lot of things that could go wrong with Raya that you don't have to even think about for a non-tube fed kid. She will be with Donny all weekend, which is great (for her :). He is totally capable of handling her and I'm not worried about that at all. As long as the feeding pump doesn't give him trouble. The other 2 kids will be very helpful at keeping her entertained & out of trouble. He gets to experience OT for the first time too. :) I'm sure he'll be really excited to go back to work on Monday, but they'll survive just fine without me. Even so, I'm having separation anxiety.
However. I am SO looking forward to getting a full night's sleep (3, actually) with no "NEE-ner NEE-ner NEE-ner" of the feeding pump alarm at 2am!!! Best of luck, Donny. :)
In other news, I have FINALLY gotten a respite provider. Hopefully she will be able to start in 2 weeks. She'll be staying with Raya for about 3 1/2 hours on Sunday while we go to church and for another 4 hours on Monday or Wednesday mornings so I can run errands & spend some much needed alone time with Kaida.


  1. HI! I just found your blog and wanted to tell you that I think it amazing! And really helpful! Thankyou! We also go to PCH! Who is your GI Dr.?

    my blogs are


  2. Good Luck! Looking forward to hearing how it goes. We've left Henry overnight (across town, which is oh, two minutes from our house) twice. Next weekend I head to Seattle for two nights and two and a half days away from him. Just like Donny, Noah's capable, will be good for him, but my anxiety is already mounting, and we don't even have NEE-ner NEE-ners or meds! :)


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 …