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August 1st, 2011, 04:46 PM
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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August 4th, 2011, 08:27 PM
Posts: n/a
Praying hard for sweet baby Chloe. She is absolutely gorgeous. I'm glad that she is doing so well and praying that NH is not the diagnosis. Praying for strength and comfort for you to as you deal with all of this.
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August 5th, 2011, 10:56 PM
Mega Super Mommy
Join Date: Nov 2009
Posts: 2,710
She is sooooo beautiiful and so are you! I'll be praying so hard for your little sweetheart. I hope she continues to improve.
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August 6th, 2011, 02:10 AM
Mega Super Mommy
Join Date: Dec 2008
Location: New York
Posts: 1,760
She is gorgeous. I'll be thinking of you and your little one. Hope she'll continue to improve.

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August 7th, 2011, 04:14 PM
liz bevan's Avatar Super Mommy
Join Date: Jan 2009
Location: Edmonton, AB
Posts: 998
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she is beautiful.
keeping you all in my prayers

Thank you so much for the awesome siggie Claire
Our joys will be greater
Our love will be deeper
Our lives will be fuller
Because we shared your moment
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