Hi Laura,
This sounds like a baby who was pretty sick. I am not the expert on the
fortification of human milk for preterm babies, I hope Nancy Wight will see
your post and comment. The baby may still need the minerals. However a few
things raise red flags for me. The weight gain is very high at 80-100 grams
per day, and so I wonder if baby is having some cardio-respiratory problems
with fluid retention or fluid overload, and that is why the doctors are
trying to increase the caloric load of the milk, so as not to have to give
too much volume.

Often for such babies, a 24 cal formula would be used if formula fed. In my
past experience, we even used 28 cal formula. However, I see 180ml/kg/day
mentioned, and if my NICU memory serves me, that is not really a fluid
restricted amount. If the baby is not able to bf effectively to get his
volume and calories, or has cardio-respiratory compromise during bf, then I
see where another plan is needed. But has it been determined that baby can
only nurse 2x per day? Also, does baby do better on bottle feeds? Better
meaning better oxygenation and more efficient feeding (milk transfer).

Apparently baby is still pretty sick? He's on nasal cannula, albeit on room
air, but seems a good gestational age and size to go home. I think the main
thing is this: Parents need to request, and if not responded to then they
need to demand, a parent-staff meeting. It truly upsets me when parents feel
desperate, as you say, and do not feel they are at all involved in the
decisions of their infant. Parents should find out exactly what the future
care plan is and why. They should then say what they want to happen and why:
if mom wants non-dairy fortifier that should be explored. If parents can't
afford and hospital does not routinely provide that would have to be
discussed. If mother has a compelling reason to not use dairy or soy, she
needs to be able to voice this. I believe there is some research and perhaps
piloting of human milk fortifiers.

Could this baby go home? In my NICU experience, we had many babies with
similar medical histories and care to this one, and parents were taught how
to care for them at home - cannulas, tracheostomies, g-tubes, meds,
monitors, you name it. If parents feel they are ready or close to ready,
then is there a compelling reason to keep baby in hospital?
Lots of questions unanswered here, and I hope the family is able to become
much more involved in the care of their own infant.
Laurie Wheeler RN MN IBCLC
MISSISSIPPI USA

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