[tri-med] digestion problem

Hi Everyone,
Some of you may know our situation from the Tri-Family
list, but in case you don't, our daughter Mieko is now
3 weeks old. She was diagnosed prenatally full trisomy
18. She has a large vsd and had a pda that was
repaired recently. She has also had seizures causing
apnea spells, but they are being controlled with
medication. 

We thought she was progressing well, going up in
feedings, but yesterday she had a big setback. She
stopped tolerating her feedings of breast milk. Her
tummy became distended and wouldn't go down after many
hours. They have put a suction tube down to her
stomach and suspended her feedings. She's back on an
IV for fluids and medication. The neonatalogist who
saw her today says it looks like there's gas
throughout her entire colon. They're not sure yet why
she isn't passing it. They will do a barium test
tomorrow.

Has anyone had this problem? Was it temporary? Doctors
say it could be a blockage or possibly low motility in
the bowel related to T18 or some other reason. We're
so disheartened that every time she takes a step
forward something bad happens. She's such a little
fighter and it hurts us so much to see her go through
all of this. Any thoughts?

Maya
Mom to Mieko 3/09/04

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