Our weekend started off great with a long awaited visit 
from the gastro team on Friday.  After their initial consult some 
changes were made that resulted in a great weekend for Harper.  They've 
determined that she has severe reflux issues, so they increased her 
Prevacid dosage and changed her formula from the Enfamil Gentlease to 
Elecare.  As far as her feeding goes, progress was made this weekend... 
Her tube feedings have been sped up to go over an hour and a half, and 
on Friday she took 12 cc's orally.  She didn't get another try until 
Sunday afternoon, and she decided to really show off and take 50 cc's in
 just ten minutes!  Everyone was so excited that they wrote orders for 
her to be offered a bottle at every feed from now on, and our nurse said
 that the g-tube surgery may be put on hold if she continued to do so 
well.  However, her 6:00 feed did not go so well and she only took 10 
cc's and grew very frustrated with the bottle and the pacifier.
Tomorrow (Monday) the GI team will be back in to discuss our options.   
If they decide to go ahead with the plan and insert a g-tube, the 
question will be when and where.  There is not currently anyone here in 
Wilmington to perform the surgery. There is a slight possibility that a 
surgeon from Chapel Hill could come here and do the operation, but 
apparently that involves a lot of hospital politics.  The other option 
is to transfer us back to Duke since they have all of her records and we
 are established and known there.  With the surgery we would be looking 
at roughly a week or so of recovery for Harper and training on her 
equipment for us, then a home healthcare nurse to help us manage her 
care at home as well as physical and speech/occupational therapy in our 
home.
A lot of big decisions will be made this week to determine what will be 
best for Harper and our family, so we appreciate you praying with us... 
As we have been learning, let us not be afraid to pray boldly and with 
confidence!  We know He hears and answers, and is using Harper to bring 
glory to His name... Thank you always for your support, encouragement, 
and prayers!

 
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