obxyogini

of course you are right in the fact that the baby's condition can not be discussed without the direct permission of the mother. As a former NICU nurse I just plain forgot that very important fact. My point, was that getting information from a variety of strangers, she should go directly to the source

You need to speak with the Neonatologist involved with your niece/nephew's care. This is the person best equiped to answer any and all of your questions. Also the nurse assigned to the baby is a tremendous wealth of information. He/She will know all the nuances about the baby. The clinical nurse specialist in the hospital can direct you to the multitude of information available, both in book form and on the web. Seeking the advice of strangers that know nothing about this particular baby situation is a waste of time and energy. They can give generalizations and threads of hope, but unless they know the intimate situation, it is not productive. Good Luck and best wishes for your sister baby