Thanks to everyone who wrote to me a few weeks ago about Sophie--the baby
with a congenital heart defect, cleft palate and Dandy Walker Cyst.  Sophie
is home now.  She is taking EBM fortified with polycose and vegetable oil per
 bottle.  It sounds like she hates it, she often vomits her feedings, but is
still gaining weight.  Mom is very anxious, is having a hard time feeling
like a mom.  She's also getting burned out on pumping.  "All I do is feed her
and pump, feed her and pump."  It takes Sophie about an hour to eat, what
with mixing up fortifier, meds, and the bottle.  The mom was pumping about 8
oz. 6 times a day.  She is now pumping 5 x a day 6-7oz, but gets
uncomfortably full  if she tries to pump less than that.  I haven't mentioned
cabbage-- I'm not sure adding another step to the routine would be wise.  Any
suggestions on decreasing her supply?  I don't think it is the pumping that
is the main problem right now, but it is where she focuses her frustrations.
 We are working on a plan for breastfeeding.

I wrote that a couple of days ago.  Sophies mom just called me and gave me an
update--Sophie has stopped gaining weight, is still vomiting during feedings
if they try to force her to eat.  She won't open her mouth, pushes the bottle
away.  She also gags on a pacifier and seems to choke on her own saliva
sometimes.  The Neurosurgeon is going to do a shunt tomorrow (a tube that
drains off spinal fluid from brain), but is not convinced that increased
intracranial pressure is causing the vomiting.
Sophie's mom wants to give her breast milk, but is still having to pump more
than she wants to --she gets about 50 oz a day.  Was starting to get plugged
ducts.  I told her to try cabbage.  The other problem is that her insurance
company has refused to pay for fortifier, which is going to cost $200/week.
 (Since she is not gaining weight, the docs want her back on 30 cal/oz.
breast milk, which requires the fortifier.)
Any suggestions? Please e-mail me privately and I will post later--I'm
already behind reading my digests

TIA

Chris Lundberg RN, IBCLC
Indianapolis