Denise, Since the milk supply recovered with adequate stim. that really
points to a problem with baby's ability to access the milk.  I agree that
seeing how baby does on a bottle can be very informative. This sometimes
 quiets critics of bfg. who think giving this kind of baby a bottle will cure
all the ills and stress.  It tends to convince all that something is indeed
awry with baby and needs to be pursued.  Since you are in Calif. you may be
able to access some PTs that know neurodevelopmental assessments that can
help determine what is going on.  I agree with whoever posted (Linda Smith?)
that baby needs further assessment for heart defect.  I worked with a very
sweet family with a quiet, fragile looking little baby who grew very slowly,
often had a week where she lost weight, and mom had repeated breast
infections (from poor milk removal).  Baby had several well-child checks
where no one was very concerned, then after a very bad week, some weight loss
and more lethargy than usual, baby was hospitalized for a good look-see.
 Found a very severe heart defect and baby died within a few days.

 It isn't normal for a baby not to feed well.  It may be a condition baby
will grow past.  It may be a condition which will show up later with delays
in speech or learning problems.  It may be the first sign of something
terribly wrong.  I've long since stopped being defensive about my fears when
I see a baby who cant feed.  Without trying to alarm the parents, I get busy
trying to find someone to assess the baby.  If I can't get anyone to act
interested  i.e.  "baby is growing, so everything must be ok..." I kind of
track them myself and offer weight checks, stay in touch by phone, do what I
can in a on-going way.  Sooner or later it resolves or gets worse.

Don't rule out a swallowing disorder (this can be looked at with tests).  The
soft palate is a muscle.  It can be as low tone as is the rest of this 'rag
doll' baby.  If baby is slow to feed on a bottle, which is a rapid flow
device, baby may be having trouble managing the flow of fluids.  Each swallow
presents the risk of aspiration -- creating a strong aversion to feeding.
 I'd try a haberman feeder with this baby.  Upright feeding positions with
hip flexion maintain a nice neutral head position to facilitate easy
swallowing.  I'd also exercise this baby with a long, finger shaped pacifier.
 I'd sling carry her in flexed positions as much as possible.  I'd inquire
about allergic hx and pull mom off any suspicious foods.

The palate shape (bubble) is perhaps a marker.  There are lots of other
chromosomal problems which associate with cleft defects.  If this is a cleft
that didn't quite happen, perhaps it is significant.  I read somewhere that
another theory about odd palates is baby was patterning the shape during
gest. with the tongue -- for some reason.  That author speculated on
allergies.
Barbara Wilson-Clay, BSE,IBCLC
priv. pract. Austin, Tx