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Forum: Pregnancy and Motherhood After Loss

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  #1  
August 1st, 2011, 03:43 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Ontario, Canada
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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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Last edited by ~Laurie~; August 1st, 2011 at 03:46 PM.
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  #2  
August 1st, 2011, 05:02 PM
luvmykids623's Avatar Platinum Supermommy
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She is so beautiful. I'm praying that she continues to do well, and that she doesn't have NH. I can't even imagine what you're going through.
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  #3  
August 1st, 2011, 05:12 PM
missy123's Avatar Platinum Supermommy
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She is so beautiful... Oh Laurie I prayed for her and you. I hope she continues to grow and strengthen. ((Hugs))
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  #4  
August 1st, 2011, 05:17 PM
OurSweetLabs's Avatar I LOVE My Boys!!
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Many Prayers for your Beautiful Chloe.

(((HUGS)))
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  #5  
August 1st, 2011, 07:30 PM
JessP's Avatar Lovin life and family
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Many prayers that she doesn't have NH. So glad she is showing signs of improvement.
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  #6  
August 1st, 2011, 08:45 PM
Brittanie's Avatar just me
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I have been praying so hard for your little Chloe! I hope that she continues to improve and that it is not NH!
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  #7  
August 1st, 2011, 11:16 PM
NutMeg76's Avatar Platinum Supermommy
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I too have been praying for your precious little girl. She is looking really awesome and I hope beyond hope that this continues!
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  #8  
August 2nd, 2011, 04:38 AM
onedaysoon's Avatar Mega Super Mommy
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I will keep praying for little Chloe that she continues to get stronger!

She is quite the doll.
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  #9  
August 2nd, 2011, 05:54 AM
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She is so beautiful! I'll keep her in my prayers. I have faith that she doesn't have NH and she'll come home with you soon.
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  #10  
August 2nd, 2011, 06:38 AM
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Bless your heart. I read your post and then saw your beautiful daughter and thought of mine.. My heart goes out to you and I am sure you are going through a horrible time right now ...I am thinking of you and hoping the find out what is going on soon and take care of it
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  #11  
August 2nd, 2011, 06:54 AM
momof8lopez's Avatar Platinum Supermommy
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Many prayers for Chloe and her family. I can only imagine how stressfull this is on you and pray that one day you are able to share with your little miracle what a true miracle she really is. Keep doing well little Chloe, your mama could sure use a hug from you soon!!
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  #12  
August 3rd, 2011, 06:24 PM
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Thanks everyone! I can't wait until you all hold your rainbow babies in your arms!
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Last edited by ~Laurie~; August 3rd, 2011 at 06:27 PM.
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  #13  
August 3rd, 2011, 09:01 PM
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I will continue to keep her in my thoughts. I think it's a very good sign that she is doing so well right now despite being a premie and having those issues before birth. She is a survivor!
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  #14  
August 4th, 2011, 07:16 PM
L-SBB's Avatar Bébé Cowgirl
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HUGS Laurie...she is so beautiful, and i'm so sorry that you're struggling with this unknown liver problem. I will continue to keep you & Chloe in my T&Ps that this liver issue is something less serious and not NH. That she continues to otherwise improve & gain weight is hopefully a good sign. KUP on how you're both doing as you're able to find time. HUGS
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  #15  
August 4th, 2011, 10:57 PM
Libby22's Avatar Mega Super Mommy
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I love her name very cute, Im praying for chloe I hope she dont have NH. Lots of hugs sending your way.
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  #16  
August 5th, 2011, 05:00 AM
geogeek's Avatar Marsi's Mommy
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I am saddened to hear this. Many prayers continue tocome your way that Chloe doesn't have NH and that she continues to growand thrive.
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  #17  
August 5th, 2011, 06:14 AM
ohnicole's Avatar Platinum Supermommy
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She is adorable! I hope that everything resolves itself and your baby girl continues to get stronger.
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