I need ideas. 4 mo old baby born with both nostrils blocked and narrowing of
the trachea. Baby has had 5 surgeries to date. Due to further problems baby
is scheduled for more surgery Christmas eve. She has developed oral aversion
and is slightly developmentally delayed. Weight gain has been poor but the
doctors put it down to the stress of the surgeries. Baby arches severely.
Cries almost continuously. Has frequent apnea episodes. She will bottle feed
slowly -- but due to the resp. problems (constant phlegm) doctors want baby
to have breastmilk. She  is going to OT/NDT for brush therapy and treatment
for sensory overload.
Up until last week baby would nurse only from the right breast--lying flat on
her back.  Her suckle is very dysfunctional--no rhythm--very infrequent
swallows. Mom's milk supply is dwindling. She pumping after every feeding but
here supply is less than 2 ounces every 2-3 hours. We've tried all
traditional herbs, rest, fluids etc... Mom wants to stay away from reglan. I
think the stress on this is taking a toll. The other children are 3 and six.
I made the mistake of trying an SNS the baby panicked at the mere sight of
the tube (wonder why?? duh.).
 Does any one have any ideas
TIA
Marie Davis