I'm new on the list -- and a LLL Leader and childbirth professional.
My little guy, our fifth, was born seven mths ago with a complete
cleft of the soft and hard palates as well as a bilateral cleft lip
(with a complete cleft on the left side).
     Needless to say, breastfeeding him has been a continuous
struggle... and after two mths postpartum, we had worked out a
wonderful, satisfying nursing routine and relationship... He would
nurse at the breast easily, efficiently (for someone with his
condition!!! -- He was able to take in two to four letdowns per
nursing session), and comfortably -- on "demand". Whenever he needed
or was interested...
     THEN he had surgery. This was the 24'th -- last week. Since then,
 his swelling has gone down, and we've been able to abandon the
tylenol with codine... BUT he will NOT nurse. The plastic surgeon had
very little tissue to work with and his nose is now "squished" down
flat (he has a very small columella, that needs to be repaired in
aprox. one yr.) and his nostrils now allow very little air to pass
through. To describe adequately, I'd say the opening IN his nostrils
equals that of the very, very tip of a pen. He can't breathe. Even in
his sleep, his new top lip sucks in and he gasps if his mouth closes.

     He will get into position to nurse and gets as far as the nipple
entering his mouth before he pulls away and cries bloody murder. His
back will arch and he becomes extremely hypertonic. this has been
awful for me, as I now have no way to bed him down, snack him, or
otherwise soothe him (today he had his stitches taken out, and his
crying could not be comforted afterward, for instance, whereas prior
to the surgery major and minor ills, bumps and owies could be
immediately soothed with the breast).
     HELP! Someone! Please! If you have any experience in this area,
I'm all ears.
     What I have been doing/trying: keeping him skin to skin as much
as possible... holding him in the nursing position but not forcing
the issue (or rather, trying NOT to)... offering the breast at the
usual times he would nurse (pre-op)... etc...
     He is not on any solids at all... no juice or other supplements.
I have pumped since his birth and continue to do so. Only difference
is, now he is not getting a complement... his full feed is by the cup.

     If you can help or offer words of encouragement and support,
please do...

Carrie McKenzie