Heather, I think this is a topic that will benefit the list, as well as,
hopefully, helping you find some helpful info and support.

My experience with g-tubes is limited to the time my adopted daughter,
Julia, had one, and communications with other adoptive/foster mothers of
children with them.  The first thing I think of, when I picture Julia's
gastrostomy was that it was always so red.  At best, the walls of the hole,
itself, were red and raw looking, but it frequently got infected, too, with
a warm, red circle on the skin around it.  If your daughter hasn't yet had
an infection of any kind, I suspect that she would start having them, if you
took away all breast milk, and the gastrostomy site would probably be one of
them, along with others.

Have you considered trying to relactate to provide some amount of fresh
breast milk?  There are some benefits to fresh milk, over banked, in
general, and your own milk would also have environment-specific antibodies.
It wouldn't take much to be beneficial.  I would think that taking
domperidone and pumping a few times a day would provide enough to do the
job.  The fresh milk might also help the hard poops.  Julia had this
problem, and it was really miserable for her.  It got to the point where she
developed a rectal fissure that would break open and bleed.  When I finally
got her to nurse with the Lact-Aid, getting some of my milk, her stools were
fine, and the fissure healed and she has never had another problem with it.
(Incidentally, I although I produced milk from my babies' suckling with the
Lact-Aid, pumping just didn't have the same effect.  That was before
domperidone, which makes it much easier for someone who has not recently
been pregnant to produce milk from pumping alone, was widely available.)
Also, have you tried offering her the breast recently?  We see quite a few
adopted toddlers who start nursing at this age, or older.  I wonder if your
daughter might actually do better suckling now than when she was an infant.
Might be worth a try, anyway!

Anyway, I wish you the best with your special daughter!  Julia was born with
a congenital diaphragmatic hernia, and all of the surgery and breathing and
feeding problems that accompany that.  As she has grown up (she'll be 13 in
a few weeks), the problems have gradually resolved, to where the only
serious problem she has now is scoliosis, which is  common in CDF children.
I hope your daughter will also be able to overcome her feeding problems as
she grows.  In the meantime, she is obviously in great hands, and I wish you
the best!

Aloha,
Darillyn

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