Hello fellow Lactnetters,
I apologize in advance as this is a query that some may perceive as not
exactly breastfeeding specific but the mom really wants any feedback she can
get.
This mom is a nutritionist, 2nd baby seemed well until 2 weeks of life when
suddenly she couldn't breathe.  Eventually diagnosed with invasive
hemangioma which involved the trachea, entire side of face,nose etc.  Baby
was trached and will have this for anywhere up to several years when most
regress.
Baby is now 5 months old.  Mom pumps milk and baby has virtually had only
breastmilk.  Mom has tried to breastfeed but apparently baby couldn't handle
the flow but would suckle on the drained breast.  She is fed by Naso-Gastric
tube.
Baby is apparantly now in the second growth phase of the hemangioma and is
on high doses of prednisone.
The baby takes 120mls of EBM q3h (parents do not limit, that is just what
she seems to want) but she regurgitates copious amounts of mucosy stuff with
the feed and is gaining very poorly the past while.  Baby gained only 10
grams one week, then 30 grams last week.  The parents are very committed to
the breastmilk and are afraid the ped will insist on something else for
feeds.  They are wondering if anyone out there has dealt with severe reflux
and what helped. Again, I hope this is not too far off the beaten track, but
I appreciate the wealth of experience and knowledge out there and knew if
anyone would be sensitive to this woman's plight it would be via this forum.
Thanks so much
                               Nancy Klebaum    [log in to unmask]

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