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August 1st, 2011, 03:46 PM
~Laurie~ ~Laurie~ is offline
Mega Super Mommy
Join Date: Jul 2008
Location: Ontario, Canada
Posts: 2,095
Sorry it took so long for me to update you all. I've been spending most of my time at the hospital. Chloe is doing very well with all the usual preemie troubles. She has been off CPAP since Wednesday, she is handling her feeds and eliminating well and putting on weight (she is almost 3 lbs!), but the liver issues continue. They did an MRI on Wednesday and I overheard the doctors talking about a possible diagnosis. It seems she has iron deposited in her liver and a little in her spleen and vertebrae. This can be a sign of poor placental function or something called Neonatal Hemochromatosis, which is very rare and very bad. After I overheard that I went home and Googled it (naturally) and proceeded to lose it. It's hard to read "usually fatal" in regards to your own child. NH usually results in stillbirth or fetal death in the first weeks or months following birth. It is alloimmune rather than autoimmune (not that I fully understand the difference), but ultimately it is caused by something in the mother. It has an 80% reoccurence rate after the first NH baby. It results in placental edema (which I've had for both my losses and Chloe), low amniotic fluid and ascites (which was the case with Chloe). I called and asked for a meeting with her doctor (whom I love) and he said that he didn't want me to hear that name because he knew it would freak me out. He said it is only one possible diagnosis and, if that is what she had, it would be the first case he'd ever seen. She is under the care of a liver specialist. Currently she is doing well (off the CPAP, feeding well, liver functions and coag numbers are up, bili is down) so we are hoping that she just continues on this course. It is difficult to positively diagnose NH without a liver biopsy, and I don't know that I would sign off on that.
I can't lose her and I am so frightened and stressed, but I am trying to stay positive. Please don't mention any of this on Facebook.



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