Lydia is continuing her break from surgeries as we await Dr. Foker coming back to Boston to help with her next surgery. We’re not sure if she’ll go back to put her esophagus back on traction this month or next. I hate the thought of doing this again but Dr. Jennings says he’s not giving up on her esophagus yet so we’ll continue this long marathon. This week, she’s quite lucky to have Aunt Jenna visiting to keep her constantly entertained. Aunt Jenna loves toys and Lydia loves a smiling face to show her toys. They’re a good match. We’re so thankful family has been able to go to Boston and spend time spoiling her. The nurses report she is doing a little better each day. She is still on Versed and they are gradually weaning her from it. Last week when Clay was there she was more fussy and agitated and showing more withdrawal symptoms. They’ve also turned down her hi-flow nasal cannula from 4L to 2L and yet she continues her daily goal of pulling it out of her nose. Even mittens and tape do not deter her. The biggest change for the week is they’ve started feeding her breast milk again. She hasn’t had a meal in her gut since April. Her Gtube was changed to a GJ tube so feeds can be given directly into her small intestine. Hopefully this will continue to help in her struggle to gain some weight altough by looking at her chubby cheeks, she does not look like a failure to thrive baby! I’ll be heading back out next week and will be able to meet up with my college best friend Laura who is doing an East Coast road trip with a pit stop in Boston. Looking forward to a great weekend!
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