Help for a 24 weeker !

[@llli*momgenet]

Wow. I soooo wish I’d found a forum like this months ago. . .but I am GLAD to find it now
PLEASE help me !!!!
I have a daughter that was born at 24 weeks gestation in late July. She was very small, around one pound. It has taken some time, but surprisingly she has done well on many levels. She did not have heart problems or eye problems that many micro-preemies have. She did have problems with her lungs and has a condition called Malacia. This means she has a “floppy” airway and has trouble with swallowing and aspiration is a concern. (Laryngomalacia)
During her NICU stay, she was fed through a tube and bottle. I also was allowed to start breastfeeding. The staff was not optimistic on that, but she has shown good aptitude for breastfeeding. She does not choke (except maybe during a MAJOR letdown) or seem to have problems swallowing while breastfeeding. However . . . . .she only takes about 10-20 mL per session and this is just not enough (they say) to rely on breast feeding for proper nutrition.
So after 141 days in the NICU, she went home with a NG tube for backup. She also takes a bottle. They have me feeding her every three hours (fortified breastmilk) from a bottle. Her milk is thickened with rice cereal at a 2 (parts milk) to 1 (part cereal) ratio !!! Its very thick. She is only allowed (and only takes really) about 20-30 mL from a bottle as well. The rest goes down a tube.
I have been pumping, pumping . . pumping . . .since day 1. Now it is six months later. I am hanging in there, but of course, the farther I go the harder it gets to pump.
Now that we are home, I put her to the breast 3 or so times a day with a nipple shield. She shows a good latch and as I said, transfers a small amount. She does loose patience (or interest? ) after a short time though (maybe 10 mins ? ) . Then again, she does the same with the bottle The lactation people here say she COULD nurse but doesn’t seem to have necessary stamina.
Her pediatrician is an IBCLC but doesn’t seem to have much in the way of practical suggestion for us to transition to more breastfeed and less bottle/tube.
Her speech therapist today told me that she is at the MAXIMUM amount of rice cereal they think she should have and so even THIS LADY (who wields a bottle up and down the NICU halls) told me her BEST BET is nursing. Wow !
And since I am pumping. . . .I’d like to transition more to nursing . . but I am at a loss as to how to do it !!!!
Sorry please I know this is long but I really want to nurse my baby. It seems possible I just don’t know how to do it. I CERTAINLY don’t want to loose my milk at this point.
No one has been able to offer much solid advice OR hope.
And YES, I've seen LOTS of LC's and "professionals" along the way . . .
Thanks.

[@llli*krystine]

One thing I like to use with my twins (who were late pre-term, so we did have some NICU time but 13 days so I can't really say I know what you went through but that I am sure it's been a very long road) - is a lactation aid. It can help you get rid of bottles and also keep baby interested at breast after flow has slowed, http://www.breastfeedinginc.ca/conte...agename=doc-LA . Also this is a good article on getting baby back to breast - http://kellymom.com/bf/concerns/child/back-to-breast/ although it's more geared for babies who refuse to nurse so read it and see what applies to you.
I have been using a lactation aid for 4+ months now with my twins and really like it. I just wonder how it would flow through the gavage tube that thick. Perhaps ask your IBCLC if you should use a different sized tube than normal if it's too thick?? It is great she will remove milk and you can latch her on.
Congratulations on your daughter and I really hope you can get her 100% at breast. Nursing your baby is very special and I applaud you for all the work you've done.