Dear Lactnetters,

I am hoping for some further suggestions for this
family I have been working with for about 6 weeks.
Baby is 8 weeks old now and weighs 7lbs 4oz as of
yesterday.  Weight gain has been minimal.  In the last
eight days had gained 3 oz.

Baby was 5lbs 13oz at birth and mother states she has
3 holes in her heart, one of which they believe is
closing itself.  The others, she states, they will
most likely do surgery on when baby is around 2 years
old.  Baby is on oxygen still and continues to fail
the tests they give her to discontinue the oxygen.

This is a first baby to young parents and a very
unexpected outcome.  Mother has been pumping since
baby's birth.  She is using a Symphony now (first used
someone else's PNS and then a rented Lactina, but
these both caused pain) but is barely keeping up with
demand.

Baby didn't latch well at birth and has continued to
not latch well.  However, she will finally latch with
a shield and Lactaid and take some (between 1-2oz) at
the breast before she tires out.  She takes about 1/4
oz from breast with no Lactaid in about 15 minutes
with a lot of compression.

Baby's suck is a bottle suck, little grooving of
tongue and much thrusting.  Mom keeps her *very* close
to counter the thrusting which tends to push the
nipple out with each *suck*.

Suck/swallow/breathe ratio is in the neighborhood of
2/1/4-5, even with Lactaid and even with bottle.
Breathing seems congested and there are frequent
audible squeeks and pops when she eats.

Parents tried fingerfeeding 1-2x/day for a while to
help train baby's suck, but it seemed to tire her out
more than anything and then intake decreased.  She
would take barely 1 oz while fingerfeeding (with a
Haberman fingerfeeder).

Baby is seeing a SLP to help with oral tone.

Plan for now is to use Lactaid 2x/day, put baby to
breast as often as she desires after a bottle feed,
and pump round the clock to keep up her supply.  Peds
appt in on Monday before which I hope to speak with
ped or NP regarding a swallowing study to r/o
aspirations.

Parents are nearly overwhelmed.  Mom stated to me that
she tries to do kangaroo care, but with the oxygen it
is very difficult.  I can understand the logistal
problems.  Plus, after 8 weeks mom is expected to
function as normal.

To top this all off, mom got the stomach virus that is
going around here and was unable to eat or drink much
for 2 days.  She was barely pumping (maybe 4x/day).
And of course that was followed by decreased milk
supply and plugged ducts which progressed to mastitis.
 She is now on antibiotics and is starting to feel
better.  Her milk supply is again up to barely enough
to meet demand.  Through all this though, baby hasn't
(yet) received formula.

Mom and I talked about lactoengineering her milk, but
that is fairly impossible with no extra milk.  She
didn't seem overly receptive to donor milk.  Would it
be possible (if HMF is suggested) to skim the cream
off of one pumping session and add it to another and
then add HMF to the *skim* breastmilk?  Would HMF be
better than addition of formula?

My concerns:
1) Baby's energy level seems low.  It seems to me in
this case that feeding at the breast take more energy
than pouring the milk into her with a bottle.  That is
really the only way that we can get this baby to eat
enough before she tires out and won't eat anymore.
But then I worry about aspiration, even though I have
taught parents how to bottle feed.  If they sit her up
and keep bottle more horizontal, baby doesn't take
enough in before she tires out.  It's a neverending
battle.

2) Is there any encouragement I can give this mom,
other than "hang in there"?  I praise her for
supplying breastmilk for her baby and that seems to
help some, but this mom is getting very discouraged.
First, she feels that she failed to produce a perfect
baby.  Then she feels that she has failed to
breastfeed.  Intellectually she knows the truth, but
emotionally this eats at her, I suspect.  She states
that she and her husband have not felt able to go to
any support groups yet, but that there is a couple
from church who have a child with downs who told her
that it took 8 weeks for him to breastfeed, so mom was
encouraged by that.  However, he had no cardiac
issues, so I felt I had to remind her that it may take
longer with her baby.

3)  I haven't really been pushing the breastfeeding
because of the cardiac issues.  Should I be?  I'm
getting confused because I'd always understood that
breastfeeding was less taxing to a baby than
bottlefeeding, but in this case it doesn't seem that
way.

Sorry for the long and rambling post, if I've left any
pertinent info out, let me know and I'll include it.

Thanks,
Cindi Swisher, RN, IBCLC




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