Today we were visited by the Occupational Therapist who gave me some tools to help Elizabeth relearn to suck and swallow and eventually eat. The suck/swallow part is a few days away but we've got a trajectory now and that is reassuring. All that oral stimulation caused Elizabeth to smile and bear her pearly gums. This caused Elizabeth's mom to interrupt our session and play paparazzi. (pictures attached)
We also got the official recommendation from the GI (gastroenterology) folks who are trying to solve Elizabeth's vomiting issues. They're recommending that her G-tube be pushed further in, to convert it to a GJ tube (see matt's previous distinctions between an NG and an NJ tubes...the same principals apply here). The thought is, if she really does have bad reflux, then sending food directly into her jejunum (sp?) and avoiding putting anything into the stomach is a possible solution. There are some drawbacks (maintenance and cleaning are more difficult, and she wouldn't be able to take anything by mouth for the duration, which is at least a month - making oral stimulation more complicated and breastfeeding an even more distant possibility) but if it works, then Elizabeth could get the much needed nutrition and could hopefully learn that vomiting is not a requirement of eating.
Finally, they had to take another blood draw today because of another Lab error - think back to the error with the sodium to understand how frustrating this is. Please God, no more mistakes that result in more needle sticks.
Along with that, please pray for:
~ complete healing of Elizabeth's vocal chords (her chords may have sustained damage during one of her surgeries and this could very easily explain her GI problems)
~ Elizabeth's ability to re-learn to suck and swallow
~ An explanation for and a solution to the vomiting issues
~ Grace for me as I spend my days at the hospital...I'm learning to know my daughter and how to be a mom in a most unnatural environment...pray for our bond, and that I would have confidence in advocating for Elizabeth and would not be unnecessarily paranoid about causing her more pain by holding her and playing with her.
~ Strength for Matt as he juggles work and being an amazing father and husband.
~ A decrease in Elizabeth's chest tube drainage - to ZERO.
Goodnight and thank you. We are humbled by your faithfulness in supporting us. We are praying for you that YOU would not grow weary in well-doing...We couldn't do this without you.
Love,
M, S & E
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