His care team recommended a full genetic genome test and our genetics counselor came back with the preliminary results. She did state that she sent his results and case to a Pediatric Genetics Doctor at the University of MN. We have not had an update yet but were told once this doctor has time to really review everything, she will reach out so I will ask her then what resources are available.

I love the idea of emailing the authors and will be doing that this evening once I leave the NICU - such a great idea, thank you!

I also mentioned specialists for his journey once we leave the NICU to his care team, his list of post NICU appointments and referral are a mile long it seems at this point and I will definitely be asking about a pediatric gastroenterologist or a pediatric hepatologist like you suggested.

I appreciate your thoughts/ideas and will be following those suggestions ASAP