Lucy's had a rough week, poor baby!
She's been having a lot of issues with food lately, almost back to pre-dilatation days in March. She is unable to handle any cookies, crackers or baby puffs and gags a lot on purees as well. We've been feeding her "soup" consistency food, but she will only eat a few bites before she is D-O-N-E.
We are not sure what is up (I have several theories - I always have a theory!), but it is likely that something is stuck in her esophagus and not allowing things to pass, her stricture has gotten very small again and her esophagus is almost closed, or she has some type of allergies and has massive amounts of mucus that she is unable to handle swallowing/draining on her own. It is likely a combination of things.
We were originally scheduled for a dilatation next Tuesday, but after several discussions with our doctors, we have moved it up to tomorrow morning to see what is going on. She is such a trooper and when she's not coughing or gagging is still in a great mood. We are understandably a bit shaken up and do not know what is causing this issue. I told my mom earlier tonight that I definitely have a love/hate relationship with her feeding tube. Normally I hate it and can't wait for her to not require it anymore. However, on weeks like this, I am grateful that we don't have the added complication of a dehydrated baby to deal with.
Huge thanks to co-workers, friends, family and Nanny Sue for rearranging their schedules to help free us up at the last minute and for the continued encouragement to us all.
So, prayers for miss Lucy and the doctors tomorrow as we figure out what is up, and make a plan for her immediate relief and a longer term plan for how to resolve this for her over the next few months and years.
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