Hi Gen,
These situations, if they have gone along as you posted, make me furious!
I would suggest that the parents ask for a care conference. Please ask them
to be prepared to state firmly exactly what THEY want for their baby.
Something like this,

"We appreciate all of your efforts, and know you have our child's best
interests at heart. We understand our baby has special GI needs,however, it
seems the diet so far has been less than satisfactory. His feedings appear
to have been advanced too soon, and symptoms not recognized right away as a
serious blockage."   "Since human milk is recommended by the AAP for
virtually all infants, including sick and preterm (other than galactosemia,
for example), since human milk is sought after from donor milk banks for all
sorts of gut conditions, we want to begin using mother's breastmilk,
starting with the next feeidng, of which we have a freezer full, and have
gone thru great effort to provide for our child." "We want to have our child
at mother's breast, he might not know what to do yet, but he can begin to
learn and bond there. We believe this will help him develop normally and
have the best chance to begin to eat by mouth eventaully. We have the
jejunal button in place to give exact measured amounts of breastmilk, so
that won't be a problem." "We want any and every change in his care plan
discussed with us beforehand, unless it is an emergency, and then, of
course, we want to be contacted right away. I'm sure you realize that we
will be the ones taking him home soon, and caring for him 24/7."

I'd be very surprised if this tactic meets much resistance, and if it does,
I would ask for an ethics meeting to discuss why these requests would not be
implemented.

Laurie Wheeler RN MN IBCLC -  and former nicu nurse
Mississippi USA

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