Your situation sounds very distressing. I had never heard of such a surgery myself, so I have no insight on it. However, I've been asking around. I'm sorry that you're going thru so much, and I hope that you find some peace about this. If I have any info later, I'll be sure to let you know.
Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04