I read your response in the colostomy bag post and have an odd question. A friend of mine from another board has a friend whose son has the same diagnosis as your son. He is about 2.5 months old and still in the NICU. She has a blog (that I read) and she posts about her struggles with his diagnosis and NICU time. Would you be willing to reach out to her by email to talk with her? I'm not sure if it would help her, but since it sounds like a rare condition I assume she'd like to talk to someone who has been there. If you would rather not, I totally understand.
ETA: I sent you a PM with my email address in the event you are interested.
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....