Hi All,
I would love any wisdom this group could give me on this case.

I met this mom during preg after the diagnosis was made that her fetus had a
large diaphramatic hernia. She wanted to know if it would be worth the effort
to pump and give this baby her breasmilk. I think this group knows how I
answered this.  At this time the parents were just hoping the baby would
survive the surg and were not thinking about the long term problems even
though the medical teams were telling them.
She has no lung on the left and did well post surg, the mom strated pumping
right away and was saving up a nice supply. She started getting mom's milk via
NG tube and I was not happy that the team decided the first po would be a
"bottle" not mom's breast. This little girl did not tol the bottle and was
having severe reflux with the NG fdgs so went back to surg for repair of the
sphincture and placement of a G tube.
Now the team let mom try brfdg but this little girl had poor stamina and was
not able to take much in, so the majority of fdgs were thru the G tube. She
started to brfd better and was D/C at 2 1/2 months old, breast and G tube. The
fdgs thru the tube were mom's milk with fortifier ( at D/C this was 24cal but
after a couple months it is at 30cals).  Mom cont to pump a few times a day
but found this too difficult along with the baby's care and brfdg.  She would
brfd 4xday and then they did a cont drip thru the night thru the G tube. If
the fdgs did not go well during the day mom would top off baby with the G
tube. Her wts cont to be at best fair. Last month she was down to 3
brfdgs/day.
She is now 6 mon old and is rejecting the breast and anything orally. She gets
very full from the G tube fdg and appears disinterested in oral fdgs.  This
past week she was evaluated by an oral/speech therapist who gave the parents a
number of exercises to work with this baby but mom is disappointed that she
did not fix the problem and was hoping for a quicker solution.
Has any one worked with a baby like this (please mail me privately if you
wish)?  I told the mom to do more cuddleing, skin-to-skin, when possible. The
parents appear tenative to cuddle, like she would break or they would hurt the
G tube.
Sorry this is so long. Thanks again for any sugestions anyone can give me.
Warmly,
Ann Perry RN IBCLC