Janaki,
It is likely that this baby is tiring quickly and therefore having
difficulty with feedings.  What about getting the mother to rent a good,
electric breastpump, then cupfeeding or SNS feeding the hindmilk to
encourage better weight gain after nursing?  I would continue with
breastfeedings for learning and comfort and to keep up the milk supply, but
don't allow the baby to tire out. Try to conserve the baby's energy.  These
babies are typically poor feeders (with bottlefeeding also) and tire
easily. They show progressive cyanosis ("blue babies").  It is rare at
birth, but about 1/3 show it soon afterwards, another 1/3 during the first
year, last 1/3 in the next few years if surgery not done.  Watch for
circumoral pallor (pale around the mouth) and nailbeds looking bluish.
These babies have high hematocrits as the body makes more red blood cells
to try to carry more oxygen.  Their blood is thick, and they may therefore
be at risk of a cerebral vascular accident ("stroke"), so the baby should
be kept well-hydrated.  They are also at risk for frequent respiratory
infections - another good reason to continue breastfeeding. I would be
protective of this baby to try to keep away from people with colds or other
infections.

It has been a while since I have cared for these babies in hospital
settings, but these are basic points to keep in mind.  The physicians and
nurses working with the family should explain plans and procedures specific
to this baby's care.  They should go to a large university hospital with
lots of experience with this heart defect.  Most such practices have a
social worker to help and support these families.  What is hard for parents
is learning to negotiate the complexities of the health care system when
they are not yet used to this, especially if they are far from home. Other
families they meet at the hospital or clinic can often be helpful here.
You can help a lot by being a good listener, sounding board, caring and
supportive person as the parents face the stress of a baby with a major,
long-term heart defect that will require future hospitalizations and
surgeries to correct.

Anne Altshuler, RN, MS, IBCLC and LLL Leader in Madison, WI