A Pound Lighter

Last week, Evie's cardiologist didn't say much about her feedings, except to "increase her oral feeds" (as opposed to the tube). So Friday and Saturday we did not feed her through the tube, and offered her formula or solid food every hour. We wanted to give her a chance to eat what and when she wanted and not be stuffed all day long. (Sometimes I feel like we are fattening her like a holiday turkey. We don't like the tube feeds but she is still too fragile to allow her to go without nutrition.)

Friday she ate well, but Saturday she didn't. We have to be so careful that she does not get dehydrated because she is on three diuretics. Her diapers seemed a little dry to me by Saturday evening, so on Sunday we fed her through her tube. Today when Nurse Nancy visited, Evie had lost a whole pound since Wednesday - yikes. So it's back to all tube feeds for Evie.

"Just to clarify, I am sick of these tubes and tapes on my face!"


One day last week I got so tired of changing Evie's outfits (after multiple barfs) that I just wrapped her in a blanket:


Gavin and Grandma Cordes get in a little story time:


Evie had a great time playing peek-a-boo with Grandpa Vic under the kitchen table:

Except for the weight issue, Evie is doing well. She is more mobile everyday with scooting and crawling. There are times when she wants to stand up but doesn't have the strength yet. Today we gave her a "boost" several times to help her up and she happily stood for a few seconds. She even walked around two sides of her musical table while holding on!