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  #1  
August 1st, 2011, 03:48 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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  #2  
August 1st, 2011, 08:27 PM
Mega Super Mommy
Join Date: Jul 2007
Location: Grand Rapids Michigan United States
Posts: 2,890
HUGS! I can relate. I had id twins and one of them had a Congenital Diaphragmatic Hernia. They were born at 28 weeks. We found out about the hernia at 24 weeks. It is very hard to read on the internet when things can be so negative. We had five months with her after she was born. We spent many days not knowing what was going to happen. Saying prayers for her and strength for you and your family. HUGS!
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  #3  
August 2nd, 2011, 06:22 AM
SarahBethsMommy's Avatar Mega Super Mommy
Join Date: Nov 2007
Posts: 4,847
She is BEAUTIFUL! I'm praying that the diagnosis is NOT NH and her levels continue to do nothing but improve.
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  #4  
August 2nd, 2011, 08:23 AM
Platinum Supermommy
Join Date: Dec 2006
Location: Pacific NW
Posts: 13,880
Oh, the google, that stupid search engine scared the CRAP out of me when Jim was diagnosed with situs inversus. After reading the articles about it, I became convinced that he was going to die of an infection before he got out of the NICU, or if he didn't, he was going to have serious lung problems (like cystic fibrosis) and die at age 20. Turns out he's totally fine and I scared myself for nothing. My biggest advice to parents facing a rare disease is to stay away from the internet, because the information there will scare you AND 9 times out of 10, what you learn won't even be helpful information because the docs already know way more about it than you.

It's a good sign that Chloe is doing so well in spite of whatever is going on, hopefully that means it's not the scary thing and it's just something more minor. Fantastic that she's off CPAP and doing so well on feeds!

Oh, and by the way, she is GORGEOUS! And I love all the adorable blankets you've got in there with her instead of the same old hospital ones, that is cool! Did you bring those in yourself or does your hospital just have very good taste?
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  #5  
August 2nd, 2011, 10:01 PM
8miraclez's Avatar Formerly Halfbaked
Join Date: Jul 2007
Posts: 7,472
She's a doll. Try to stay away from Google, it's never a good thing. With my last baby, she had 2 head bleeds. The doctors told me she had a 60-100% of having cerebral palsy. I went home and googled and scared myself. She's fine now. If I hadn't googled stuff, I would have been able to just focus on all the good things. I hope the doctors are just tossing around ideas and it's nothing to worry about. Keep us updated.
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  #6  
August 3rd, 2011, 08:12 AM
Mega Super Mommy
Join Date: Jul 2007
Location: Grand Rapids Michigan United States
Posts: 2,890
I know I learned with Madison at the hospital for five months 2 days that doctors told us everything. I learned to take things as they came. She had so many issues we did not go into the unknown. She was also a 28 weeker with a Diaphragmatic Hernia. They never had a case where a baby was born so early that lived through even being born. I figured they did not have all the answers either, and did not know how things would go.
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  #7  
August 3rd, 2011, 05:54 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Ontario, Canada
Posts: 2,095
Thank you everyone! I am usually a 'good Googler' because I take things with a grain of salt and I always check multiple sources, and that is what freaked me out -- all the sources were saying pretty much the same thing. I did read that, if the baby didn't present with multiple organ involvement, that sometimes babies overcome and survive. The rest of her organs are doing well so far, so either way I have hope that she will beat whatever it is that is going on. It also freaked me out that so many of the symptoms fit.
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Originally Posted by Seattlite View Post
Oh, and by the way, she is GORGEOUS! And I love all the adorable blankets you've got in there with her instead of the same old hospital ones, that is cool! Did you bring those in yourself or does your hospital just have very good taste?
They are the hospital's things, actually. I thought they were super cute for a hospital, too!
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