What does bedtime look like for you?

Here’s a little glimpse of our bedtime set up for Elsa. I like to think she seems pretty happy in there, despite all the gear and gadgets. She sleeps fairly well. (Although lately she seems to be waking up between 5 and 6 a.m., which is not ideal…)

This video walks you through the TOP 5 things we use each night:

A recap:

  • A small quilt under Elsa to capture anything that might otherwise have us changing her sheets every night of the week (the ‘anything’ list: drool, spit up or vomit, Peptamen Jr. medical food dripping from her G-tube extension, poopie diaper, etc.).
  • A tank top undershirt under her PJs. (A seamstress custom made 10 of these for Elsa.) They have a snap closure at the crotch for easy diaper changing and a small hole on the side, through which we run her G-tube extension.
  • Standard Kangaroo Joey pump with hanging bags for over night feeds. We run 360 mls over 8 hours (max bag hang time) at a rate of 45 mls/hour. This constitutes 2/3 of her daily Peptamen Jr. volume.
  • A leg stabilizer to keep her from sleeping all curled up in a ball, which would be her preference. We started doing this in the fall to force Elsa’s leg into extension, because she spends SO much time every day with her knees at a 90-degree angle.
  • Guard rails on each side of her twin bed. We never put the window-side guard down. We get her in and out of the bed via the lamp-side and put the guard up once she’s ready for the night.

These things work well for us. Would love to hear things that you do to make bedtime easier or more comfortable for your kiddos.

Anitra Rowe Schulte blogs about being Elsa’s mom at anitraroweschulte.com/blog


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