Today, Elizabeth had several tests to determine if there's anything we can do to speed up how her stomach processes food. Once the results are back, we'll write more. They did let Sara try to feed her some sugar water from a bottle today. One thing is clear- her memory for how to suck from a nipple and swallow is even rustier than before. Occupational therapy will be stopping by to try to help teach Elizabeth how to do these.
One of the nurse practitioners caring for Elizabeth shared with Sara what seems to be the long road ahead:
First, Elizabeth has to be on full Portagen feeds for several days (she's poorly tolerating 14 cc/hr and needs to be at 20).
At the same time, if her chest tube output falls below 5cc per day for two days in a row, they'll take the chest tube out (she's putting out 30 now). She could probably go home after this step occurs (barring other unresolved medical issues).
Then, she'll stay on Portagen for at least four more weeks, but more likely 6-8 weeks.
Then, if things are going well, we can transition slowly to breast milk from the Portagen by mixing them.
Pray requests: Pick your favorite step in that chain of events and ask God for his mercy.
Love,
Matt and Sara
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