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Old 06-09-2012, 09:49 AM   #41
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Re: One in a million is not always a good thing

I'm sorry you are going through this but I am so glad there is hope. I hope all the logistics fall easily into place.

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Old 06-14-2012, 08:26 PM   #42
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Any update mama?
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Old 06-14-2012, 10:46 PM   #43
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Re: One in a million is not always a good thing

Quote:
Originally Posted by mmbreb View Post
Just wanted to do a quick update while I can't sleep tonight. We have booked the $100/ night room through the hospital for the first few nights. Just decided it was easier to get there and than try to work the rest out once we talk to the doctors and have a better game plan.

As for another Dr the only place around here the is equipped to handle such a high risk case is U of M and they are a no go. They did do another check up on Monday and were able to see that she has not gotten any worse over the past two weeks. That is HUGE and hopefully if that continues she wont be in that bad of a condition. Right now we are just taking some relief knowing she is not progressing in her heart or brain issues even without any treatment.
What a blessing to know that she hasn't gotten any worse!!!

Still praying for you.

God bless!
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Old 06-20-2012, 03:29 AM   #44
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Re: One in a million is not always a good thing

This may be a rambling mess but it is the best I can do on an update for everyone:

We got here to NY on Wed the 13th and they had a lot of hope. She looked really good but within two days things got very bad very fast. I dont have the strength to share the whole story now but it turns out the condition is much worse than we thought and I have it too. It is genetic from what we can tell. They had to do a very risky c-section on the 16th where they told my family I could die. They gave me the choice to have her vaginally but she would die right away and have no chance to live. I couldn't do that so I went ahead with the c-section. At first she was not moving at all and I didnt get to see her because they put me completely under for the surgery. I had to have 4 pints of blood etc. DH says at first she didnt move at all and they were losing hope fast but I went to see her as soon as I could and she grabbed my hand in a way that I knew she could hear me. She held my finger so tight. The evening of the 17th my husband had gone to see her (I was still really restricted on what I could do) He came back and said her oxygen saturation was low but her blood pressure was getting better. DH headed back to the hotel with our DS and my mom. I called to check on Abby before going to bed. They said the dr would be up to talk with me about her condition.

He let me know she wasnt doing very well. He did not tell me how bad it really was or at least I didnt understand. I called DH to get back to her and meet me in NICU. I had to keep rushing my nurse to help me get a wheelchair and get down to her. I literally had to drag an IV poll that would not roll just to get there. I didn't realize when I walked in the room that she was almost gone. Than my husband finally got it through to me she was letting go and we had to let her. There was no more the Drs could do. They took her off all the machines and brought her to a private room for us to say goodbye to her.

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Old 06-20-2012, 03:44 AM   #45
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Re: One in a million is not always a good thing

I am so, so sorry momma what a beautiful girl.
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Old 06-20-2012, 05:38 AM   #46
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Re: One in a million is not always a good thing



I am so so sorry for your loss. I'm glad you are okay and were able to say goodbye.
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Old 06-20-2012, 06:08 AM   #47
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Re: One in a million is not always a good thing

I am so very sorry mama.
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Old 06-20-2012, 06:27 AM   #48
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Re: One in a million is not always a good thing

So very sorry for your loss. Prayers for your family.
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Old 06-20-2012, 06:37 AM   #49
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Re: One in a million is not always a good thing

Oh Mama! I am so sorry for your loss.
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Old 06-20-2012, 06:42 AM   #50
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Re: One in a million is not always a good thing

Oh mama, I had so much hope reading through this thread and I was praying the NY doctors could help you and your sweet baby girl. I'm so, so sorry for your loss.
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