>Carrie Edwards
>Caroline Edwards RNC IBCLC
>Atlantic City Medical Center-NICU
>Atlantic City, NJ
>609-441-8186
>[log in to unmask]
>Carrie,
>I have followed your post. While I have not had a cleft baby in my practice
>yet, I do have a few thoughts. You mentioned that your baby now has very
>small nasal airway, will this be corrected in later surgery? If he really
>can't breath through his nose, is nursing just too uncomfortable?
>Also, if nursing is physically possible, is your baby just being orally
>defensive as a result of the surgery? If so, try to be patient. See steps to
>breastfeeding the aggressive non-nurser in LLL Breastfeeding Answer Book.
>Always keep "exposure" to breast pleasant and relaxed with no expectations to
>successfully feed just keep these moments "happy times" for now. Finally,
>have you tried taking a bath with your baby, some babies do latch in the tub,
>once the tension of the problem has been released. Sometimes things can take
>ALOT longer to work out than we would like, try to follow your baby's lead,
> his "new" mouth may be sensitive or he may need time to adjust to the new
>sesations  in his mouth .  I know it is easy for me to say " be patient" but
>keep trying. Your life is incredibly stressful right now , can you find some
>ways to release all the tension you have been experiencing? I hope some of
>this is helpful...
>Robin B. Frees, BA IBCLC


Robin,

I think you are totally correct about the whole oral cavity feeling
DIFFERENT and Gaelin's need to get used to all of the new sensations. But as
for airway... swelling has gone WAY down and even the plastic surgeon was
impressed by how well he's doing post-op. His premaxilla (he was bilateral)
is even moving into place as it should. Gaelin is now able to breathe much
more easily. Pain: we were able to discontinue the pain med. that was
prescribed, on day 3 post-op. It is now day 10. He easily handles toys, his
hands, the cup, etc... in his mouth. The only time he shows any discomfort
whatsoever is when he accidentally bumps himself. And we, of course, are
very careful in preventing this from happening. (It's absolutely amazing how
quickly healing takes place!!!!!!!)

Last night, I was lying in bed with Gaelin on top of me (the only way I can
get him down, now) and got curious about whether or not he would accept my
finger to suck on... I reached around him as he slept with the opposite hand
to press gently down on his chin to open his mouth enough to where my finger
would be able to slide in.

He began sucking, to my surprise and delight! I was excited by this!!! Not
only was there no pain (he would have roused or awakened -- plus, I noted
that my finger, as he sucked, didn't rub at all near or against the site of
incision) he still sucked correctly... STILL -- he's getting lax. His bottom
two incisors rubbed and scraped often against the finger that he was sucking
on. We're already going to need some retraining if he does indeed go back to
breast...
My only question is how this could be carried out. He is an older baby...
this will be a diff. deed than retraining a nipple conf. newborn.

This morning, I tried to finger his mouth again. He started to move his
mouth as though he would suck... but then stopped and began biting.

My new plan of action... Keep offering my finger to him for sucking,
especially as he is going down and is asleep (the unconscious works wonders
sometimes. If I do it enough, I am thinking he will feel a need to suck... a
beginnning. Possibly a tiny baby step forward in the quest to bring him back
to the breast).

I am also going to send my husband out to pick up some syringes again.
Initially, we fed him my expressed BM via syringe. I finger fed him with
them. Now, he is using a cup (and has been since 3 mths pp). I think my main
aim, right now, is to bring him back to the realization that num nums come
from sucking, and then switch him back over to the breast.

Any further tips, ideas, opinions on this?

Carrie