Home care infant with extreme short gut syndrome

Ryan was born 8-8-8.  He was born with gastroschisis, a condition leaving the intestines on the outside of the body.  An artery that is supposed to close at birth to feed the intestines was left unnoticed by the staff in the NICU and his small intestines died.  The surgeons ultimately removed all his small intestines and most of his colon.  He is dependant on TPN and the doctors are reducing him to 16 hours on and 8 hours off.  He has extreme short gut syndrome as he only has 1 inch of the intestine and about the same of the colon.  She is looking for moms with baby's with extreme short gut to talk to

This would be difficult for anyone to take on at any age, but his parents are young and don't really have the background to ask questions.  His care team are meeting with them tomorrow.  What should they ask?