Thank you to everyone who has responded to my question on and off list. From
your suggestions and ideas I suggested this mother to try a different or
more effective pump,  start using a nursing supplementer,  avoid pacifier
use, do breast compression, super switch nursing, do lots of holding,
cuddling, skin to skin contact, etc. The ideas of using galactogogues and
Domperidone was not welcomed because the baby's ped. would not let the
mother take anything new that would go through baby's kidney.

And here is an update: There has been some improvement, at least mother
could initiate let down sooner with her Medela electric pump and milk supply
started increasing. For two days they used a bottle to feed the baby with
formula and EBM then stopped and used the spoon again. Baby refuses to nurse
with the SNS. He still nurses when milk flows, so mother pumps, and when her
milk lets down, she calls the father who cuddles the screaming baby and puts
baby on breast. Baby cannot be nursed while half asleep because he wakes up
so suddenly and starts screaming right away. Mother reports it has been
happening since baby takes steroids. Since baby has suffered a lot lately,
she doesn't want to take the pacifier from him, because that is the only
thing that seems to calm him. She says her baby had never wanted to nurse
for comfort, not even when he was younger and had no illness.

Unfortunately, baby's condition is getting worse, he has to go to the
hospital again, so mother is afraid how she would manage pumping and nursing
while in there with baby. And I'm afraid she would meet some 'professionals'
who would tell her not to bother with nursing.

Ibolya Rozsa, LLLL, IBCLC
Hungary

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