I received this, and would appreciate feedback.  Any comments, please direct
to me, at [log in to unmask], and to list. Thanks. Kathleen

From communication sent to me:

"My baby  was born with a very rare blood disease (Langerhans Cell
Histiocytosis X) and spent the first 4-1/2 months of his life in NICU at a local
Children's Hospital. One of the symptoms of the disease, however, is "failure
to thrive."   From the time he was born, baby would latch on to the breast
eagerly, but after five or six minutes of nursing would begin vomiting
profusely.  He has been sustained by IV fluids since the day he was born,
although we continued to attempt breastfeeding every few days.  He was unable
to take anything at all by mouth.  At 4-1/2 months they did exploratory
surgery and found that the disease had caused an intestinal blockage.  The
blockage was bypassed, but even after 2 weeks he was unable to keep anything
down.

Determined to breastfeed, I purchased a Medela breastpump pumped every 3 hours
for 5-1/2 months.  We have over 900 bottles of frozen breastmilk in storage.

When we finally brought him home from the hospital (at 5 months old) we
continued to feed him enterally (through IV fluids) but I also began feeding
him breastmilk through an NG tube at a rate of 2cc per hour.  That was all he
could handle at the time, and even at that low rate he vomited most of it back
up.  Each day I increased the rate by 1cc per hour.

To make a long story (somewhat) shorter, baby is now 6-1/2 months old and
is now able to handle 60cc per hour through his NG tube.  He is also able to
breastfeed now, but after all these months of being fed through both an IV and
through an NG tube, he doesn't seem to connect nursing with hunger.  He enjoys
nursing, but falls asleep after 5-10 minutes at the breast.  We are trying
very hard to wean him from the IV feedings ($550/day) but don't seem to be
able to get him to take enough breastmilk on his own to thrive.  He is now
6-1/2 months old and weighs 13 lbs 3 oz.  Some weeks he doesn't gain any
weight at all and some weeks he actually loses 1-3 oz.

He sleeps 12 hours each night.  I have tried to wake him up, but it is nearly
impossible.  When he nurses during the day, he falls asleep after 5-10 minutes
at the breast and is NEVER able to nurse from both breasts.  The doctor keeps
stressing that we need to be able to determine exactly how much milk he is
getting when he nurses, but I don't have a clue.  We also don't know how to
encourage him to take more milk.  We can't afford to cut back on his nightly
drip feeding and take a chance on him not getting enough milk but are
desperate to get him to nurse like a "normal" baby.  Can you give us any
advice?  He is receiving chemotherapy for this condition.

A desperate mother,xxx"

Kathleen B. Bruce, BSN, IBCLC co-owner Lactnet,TLC, Indep. Consultant
in beautiful Williston, Vermont, USA
mailto:[log in to unmask]
LACTNET Archives http://library.ummed.edu/lsv/archives/lactnet.html