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Another update (x-posted)

Forum: Pregnancy and Motherhood After Loss


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August 1st, 2011, 04:43 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.


Last edited by ~Laurie~; August 1st, 2011 at 04:46 PM.
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August 1st, 2011, 06:02 PM
luvmykids623's Avatar Platinum Supermommy
Join Date: Feb 2008
Location: New Jersey
Posts: 13,408
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.

Thank you Jaidynsmum for my beautiful siggy!

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August 1st, 2011, 06:12 PM
missy123's Avatar Platinum Supermommy
Join Date: Nov 2005
Location: Savannah GA
Posts: 13,418
She is so beautiful... Oh Laurie I prayed for her and you. I hope she continues to grow and strengthen. ((Hugs))

Pregnancy Loss April 2009, September 2010
CP 10/2008, 1/3/11 {missing my babies every single day}Mommy to 4 Children - 3 boys ages 22, 21 and 18 & baby Scarlett
After 2.5 years TTC with 4 losses our Family was given the gift of Miss Scarlett
Do not ever give up hope...

Miss Scarlett... Our miracle girl still brings happy tears to my eyes.

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August 1st, 2011, 06:17 PM
OurSweetLabs's Avatar I LOVE My Boys!!
Join Date: Jul 2007
Location: South Carolina
Posts: 11,014
Many Prayers for your Beautiful Chloe.

Donna - Mom to David and Asher

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August 1st, 2011, 08:30 PM
JessP's Avatar Lovin life and family
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Location: Washington
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Many prayers that she doesn't have NH. So glad she is showing signs of improvement.

Thanks .:Shortcake:. for my great siggie

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August 1st, 2011, 09:45 PM
Brittanie's Avatar just me
Join Date: Jul 2006
Location: Littleton, CO
Posts: 43,573
I have been praying so hard for your little Chloe! I hope that she continues to improve and that it is not NH!
Thanks to babydoll213 for the siggy! My kids' blog Cora's blog

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August 2nd, 2011, 12:16 AM
NutMeg76's Avatar Platinum Supermommy
Join Date: Oct 2006
Location: United States
Posts: 20,689
I too have been praying for your precious little girl. She is looking really awesome and I hope beyond hope that this continues!

When they persisted in questioning him, he straightened up and said to them, "Let the person among you who is without sin be the first to throw a stone at her." John 8:7
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August 2nd, 2011, 05:38 AM
onedaysoon's Avatar Mega Super Mommy
Join Date: Oct 2008
Location: Montreal
Posts: 3,168
I will keep praying for little Chloe that she continues to get stronger!

She is quite the doll.

Forever missing our angel November 9, 2010, with us for 9 weeks

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August 2nd, 2011, 06:54 AM
Mega Super Mommy
Join Date: Sep 2010
Posts: 1,172
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.
I had my rainbow baby on December 14, 2011. Now my family is complete!
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August 2nd, 2011, 07:38 AM
Platinum Supermommy
Join Date: May 2008
Posts: 7,676
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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August 2nd, 2011, 07:54 AM
momof8lopez's Avatar Platinum Supermommy
Join Date: Feb 2009
Location: illinois
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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!!
momma of 8 beautiful children now. Most recent is Jerry Jr. born 11/19/12 at 37wk, 7lbs 6oz and 19.5inches and Baby Reymundo born 10/7/13 at 35w6d, 6lbs 7oz, 19.5 inches. Momma of 5 angels. New siggy to come!

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August 3rd, 2011, 07:24 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Ontario, Canada
Posts: 2,095
Thanks everyone! I can't wait until you all hold your rainbow babies in your arms!

Last edited by ~Laurie~; August 3rd, 2011 at 07:27 PM.
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August 3rd, 2011, 10:01 PM
Mega Super Mommy
Join Date: Nov 2010
Posts: 2,571
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!
Mom of 3 awesome girls

Lucia Jane, born 10.9.11

Forever missing our angel babies
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August 4th, 2011, 08:16 PM
L-SBB's Avatar Bébé Cowgirl
Join Date: Sep 2008
Location: Texas
Posts: 9,810
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

Savannah Stylin!

Remembered Forever with Love
10/13/2008 (@9w2d) 10/18/2011 (@8w5d) 2/12/2012 (@4w3d) 8/13/2012 (@10w3d)
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August 4th, 2011, 11:57 PM
Libby22's Avatar Super Moderator
Join Date: Feb 2010
Location: Palmerston north, New Zealand
Posts: 9,105
I love her name very cute, Im praying for chloe I hope she dont have NH. Lots of hugs sending your way.
AF 15 Nov 2017 Nz time praying for a rainbow heathy baby <3 All I want for Christmas is a BFP!!

My Ovulation Chart

missed m/c 28 march 2010- Toni 11 weeks CP 11 march 2015- Katie 4 weeks 10 May 2015 Lilly- 4 weeks CP blighted ovum 2017
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August 5th, 2011, 06:00 AM
geogeek's Avatar Marsi's Mommy
Join Date: May 2009
Location: In yonder mountains
Posts: 9,339
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.

Thank you *kiliki* for my beautiful siggy!

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August 5th, 2011, 07:14 AM
ohnicole's Avatar Platinum Supermommy
Join Date: Nov 2009
Posts: 5,756
She is adorable! I hope that everything resolves itself and your baby girl continues to get stronger.
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