Jean,
The care of a baby such as your great grandchild is very difficult, and the
feeding and wt gain are sometimes trial and error. I have been a neonatal
nurse for over 30 yrs (not currently a nicu nurse) and I don't think there
is a huge risk to adding the powder. The ideal would be for the baby to
completely thrive on breastmilk alone, but if that is not the case, go with
the standard of care. I don't have research in front of me, I will admit.
If it were my child or grandchild I would of course be worried about all
these same issues.

I would encourage your granddaughter to keep up a bountiful milk supply if
at all possible. If she is now doing some direct breastfeeding, which I
hope is a joyful experience for them both, I would gently remind her to
continue her expressing and not slack off if at all possible. Skin to skin
contact and safe co-sleeping can help with weight gain too.

It is certainly within reason for a parent to report untoward effects of
any treatment or feeding plan, and suggest a short term trial of another
plan. Increasing volume if tolerated without fluid overload, increasing fat
content by lactoengineering or adding for example (I think) MCT oil, trying
another formula or fortifier if this one is having untoward effects. All of
this would be appropriate for parents to discuss. A weekly (at least)
multidisciplinary conference to include the parents would be appropriate.
Parents should keep a diary with observations, ideas, and questions. It is
important for the baby and family's health that they all feel part of the
team looking out for the best interests of the baby.

Can the medical facility put parents in touch with other family(ies) who
have had a child with same/similar diagnosis or is there an organization
which could help? I forgot exactly what the diagnosis was. From what you
have written, progress is being made, and that is a very positive thing.
Laurie
Laurie Wheeler RN MN IBCLC
Mississippi USA

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