Speaking of the baby who was diagnosed with velopharyngeal
insufficiency, I would like to ask anyone who has experience with this
to please respond.

He had harsh respiratory sounds, mild tachypnea,
sucks in very short bursts, is fussy at breast and bottle even with
fairly slow flow, took a few weeks to be able to suck efficiently, lost
milk through his nose during some feedings and about half the time when
he spit up.  He was able generate some negative pressure while sucking
on my finger, and he has a very high palate, short mandible, and
hyperresponsive gag reflex.  He is able to inhibit his gag for the
breast, and managed the Haberman feeder after a few tries.

The doctor who diagnosed the VPI told mom she will have to pump and use
a "special bottle for cleft palate babies" but did not have any Haberman
feeders left.  Mom did not want to do this, but was at her wits end with
inefficient, miserable feedings (this little guy cries and resists
feeding after a few minutes).  I suggested a combination of bf when he
could, and the Haberman when he was having a hard time.  I stopped by
yesterday with a Haberman feeder (mom was desperate), and he had
difficulty with that as well - he sputtered and had difficulty
swallowing 4-5 times on the slow setting (in the 2 minutes he was
willing to feed from it!).  I showed mom how to recognize stress signals
and take the Haberman out of his mouth to rest on his upper lip, we fed
in an upright postion (as we did at the breast), and she is patient and
willing to give very short, very frequent feedings.

So, does anyone have input on how else we can help this baby?  We have
done straddle position and an upright modified cradle, and he does a bit
better than he does in sidelying or standard positions, but he still
only sucks a few times before letting go and crying.  No degree of head
extension seems to help, flexion increases his work of respiration.  His
mom is very, very committed (she was bf/attachment parented herself and
wants the same for her little guy), and would really like to maximize
breastfeeding and minimize pumping.

I've already taken two smart colleagues with me to see him (both
Lactnetters - hi Svetlana and Rose) and they had wonderful positioning
suggestions.  What else can we do for this lovely little guy?
--
Catherine Watson Genna, IBCLC  New York City  mailto:[log in to unmask]

             ***********************************************

To temporarily stop your subscription: set lactnet nomail
To start it again: set lactnet mail (or digest)
To unsubscribe: unsubscribe lactnet
All commands go to [log in to unmask]

The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html