Anyone have any experience with a child with profound neurological  issues
like this?  The parents are very hopeful that he will have some  recovery,
but his test results are grave, so we just don't know.  It's  been very
painful for this mom to deal with healthcare providers who are  trying to
make her "face reality."  Several even suggested to the  parents that they
simply don't feed him, and another nurse told her while she  was cuddling the
baby "You know he won't be this cute and cuddly when he gets  bigger."
Jennifer Tieman


Jennifer, I have never had a mom who regretted pumping for her baby even if
the baby was never able to go to breast. This may be the one positive thing
she  can do for this baby. It sounds like the prognosis for much recovery is
poor but  I'm amazed a nurse would say to a mom that he might not be as cute and
cuddly  like this forever. We don't starve babies any more. When I was first a
NICU  nurse this was an option presented to parents but I have not heard  of
this  in years. Mom will face reality in her own time.  Meanwhile I would
offer her your PIS.  Sounds like her supply is great and  she may do well with it.
Pumping 8 times per day with no end in sight can be  daunting so we should
make it as easy as possible--which means a fully automatic  electric pump. If
her supply is as good as it sounds the Pump In Style might  just do it for her.
And, yes, it's possible that she may be able to get by  with 5 or 6 pumpings
per day. She'll just have to watch and see what her supply  does. Your other
option is to contact your local Medela rep and ask if they can  do anything for
this mother. They might offer her a grant pump.

This is a heartbreaking situation. This family is so lucky to have  you!

Kathy Boggs, RN, IBCLC

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