I had a client whose first baby presented rather similarly.  He would
swallow if you put a feeding tube taped to finger and kept squeezing.  If
you allowed him to have any control over feeding, he rejected intake.  He,
too, had odd color, kept loosing weight, or, at best, put it on in painfully
achieved qt. oz increments.  I felt he "looked wrong" and wrote several
reports to pedi. about my concerns.  Baby was seen several times and
basically she was told he was just a slow gainer and had no other medical
problems.  Family went out of town for a wedding for 10 days.  By this time,
baby was doing some formula by bottle along with pumped milk, and I was
anxious that this spindly 3 week old was not going to be monitored for such
a long period.  Mother, by now, was getting annoyed with me since everyone
felt baby was finel but me.  I asked her to come back to weigh as soon as
she ret. to town.  When she did, baby hadn't gained but 2 oz in ten days of
bottle feeding.  I threw a big fit and insisted baby go immed. to doctor.
Doctor finally  became alarmed and sent baby to hospt. where it was
discovered his heart was so enlarged it was pressing on his esophagus --
interfering with feeding.  Baby's lower extremities were found to be oxygen
restricted, and he was rushed to surgery.  Mom pumped and delivered breast
milk for a number of weeks to see baby through this period before she weaned
from stress.  Baby will have life-long heart monitoring needs, but has not
suffered loss of legs or brain damage that they can spot at present.

We get to spend long periods of time observing babies, and I know that I
have learned over time to trust my own instincts about how some babies look.
Some of these heart condtions must be difficult to detect.  Cystic fibrosis
is another problem that I have seen with baby who looked ill and took milk
only if pushed in -- yet still didn't gain.  Lisa, your idea of
photographing color changes is great.  It will get pedis. attention.  The
mother must have more thorough assessment, and it may be they are just
giving baby some time to recover from birth to see if its just 'slow start'
stuff rather than illness.  She needs to get their attention. In the
meantime, Maureen is right:  this baby shouldn't be left alone.

Barbara Wilson-Clay, BSE, IBCLC
priv. pract. Austin, Tx