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  • Writer's pictureJessa

We are getting pretty good

Updated: Jan 17, 2022

You ever feel like you’re getting the hang of something that you have no business being skilled in? By the end of June I was really good at:

  1. packing a suitcase in minutes

  2. sleeping on a full size fold out couch

  3. existing on no sleep

  4. knowing which vending machines has the sodas and candy I wanted

  5. waking up 4,327 times a night

  6. programming feeding pumps, replacing NG tubes, shutting off beeping feeding pumps, hearing incessantly beeping o2 sat monitors


when will this all be over?


We spent 7 more long days inpatient as we tried to come up with some way for Jude to be able to comfortably take in 1200ml a day without getting sick. We went through countless tests to ensure there wasn’t a structural issue hindering him from being able to take In such volume, and we worked tirelessly to keep control of his calcium and rehydrate from the losses we took during all of his vomiting.


continuous overnight feed


The only viable solution was to break Jude’s feeds down over 24 hours so that he never has to take in too much at any one time. He would have to do a 10 hour continuous overnight feeding.

Jude meet bridle

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