I was sad about the end of summer and her missing the fun of splashing in the water, so got creative and set up a bin of warm water for her to play in. It was relaxing for both of us.
5-year-old Audrey was born with her lungs connected to her stomach and an incomplete esophagus (Long Gap EA/TEF or Esophageal Atresia). After two big surgeries and 142 days in the NICU in Utah, Audrey finally moved home but has since needed much more surgery, now in Boston. Much of her food still comes through a tube directly into her stomach, and she has had many procedures to help her swallow food, but she is thriving today. Thank you for blessing us with your love and prayers.
Sunday, September 9, 2012
Now You Feed 'em, Now You Don't
Just had a nurse come in and tell me we
weren't allowed to give her more than tiny tastes of baby food--- so
this makes about the seventh time I've had to argue the case for what
Audrey is allowed to do based on what was told me directly at her
swallow study, not what was written afterward (apparently somewhat
vaguely). Ay Yi Yi!!!!! Why do these things always seem to happen on the weekend. On a great note, she is off IV liquids
entirely and they are talking about
pulling her central line (although I hope they keep it through her
dilation surgery this week because she is so hard to get IVs into! This week will be #1 of three weekly procedures
to train the scar in her throat to behave itself and not try to close
off.) For all my positivity, this whole communication-between-
caregivers-over-food issue has brought out a bit of the mama bear in me!
I was sad about the end of summer and her missing the fun of splashing in the water, so got creative and set up a bin of warm water for her to play in. It was relaxing for both of us.
I was sad about the end of summer and her missing the fun of splashing in the water, so got creative and set up a bin of warm water for her to play in. It was relaxing for both of us.
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