Dear Denise

I just read your 12/29 update.  Thanks again for filling us in so we can all
learn!  How helpful (for mom's perspective and getting the MDs attention)
that the bottle suck showed the same problem.  This time I also caught that
the baby has been "floppy" or low tone...and I understand more about needing
the very thorough exam and your extensive check into other problems.

Way to continue to be an advocate for this mom and baby--supporting mom,
encouraging mother to explore options, and speaking to the MDs on her and
baby's behalf.  That takes a lot of time, energy, & expertise!

The baby's inability to sustain an effective suck IMHO could still be the
bubble palate--showing the same symptoms as a cleft (can't use sns, can't
maintain suction without significant effort) .  It takes such energy for the
baby to sustain the effective suck that s/he gets too tired to continue for a
complete feeding.  If this baby also has a second problem causing hypotonia,
well then it would just be that much worse.

Is the mom OK with using the p-syringe long term?  I think it is a nice way
to feed a baby like this at breast. You can point out to mom that she is
responding to her baby's want of food and not "force-feeding" if she only
gives the milk when the baby sucks--however weak.

 Is she possibly also looking for a way to feed the baby when out in public?
 Some mom's don't like the extras at these times... If this is the case I
would suggest, for these times, trying the Haberman feeder available from
Medela(1-800-TELL YOU).  Another LC friend of mine had  positive results
using this to supplement a baby with a cleft of the soft palate.  I like the
concept that it gives the baby control of the feeding and mom wouldn't have
to feel like she was "force-feeding her baby all the time".  Suck, but not
suction, is required to obtain the milk.

Natalie Shenk, BS IBCLC; Private Practice LC (and Medela rental station), OH,
USA who loves when other LCs share the details of their difficult cases!
 THANKS!