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Old 05-14-2012, 04:26 PM   #21
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How did it go mama???

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Old 05-14-2012, 07:17 PM   #22
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Re: Tentative diagnosis: Vein of Galen

We talked to the doctors today and the condition the baby has is Vein of Galen. We will be going to U of M Hospital on the 24th for an MRI and more ultrasounds etc. to evaluate her condition overall and especially the condition of her heart. Over the weekend Ron and I did a lot of research and found out that the best doctor to treat this condition is in New York. His name is Dr. Berinstein, he is world renowned for the treatment of Vein of Galen. We talked with his office in NY today and they want us to send all the scans to them after we get them.

They did let us know that it is likely we will need to deliver at Roosevelt hospital in NYC. This means we will need to go and stay in NYC when I am about 35 weeks along (around July 15th) until I deliver. At that point they will evaluate her condition to see when the best time to do the surgery is. They like to wait until she is 5-6 months old to do the surgery but it will depend on if her heart can wait that long. I added some links that will give you some more information if you want to see more about the condition.

http://neuro.wehealny.org/endo/cond_vein-of-galen.asp
http://theveinofgalen.weebly.com/
http://jnnp.bmj.com/content/74/suppl_1/i42.full
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Old 05-14-2012, 07:26 PM   #23
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Re: Tentative diagnosis: Vein of Galen

Praying for your family.
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Old 05-14-2012, 07:48 PM   #24
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I am glad you found a great dr. I'll be praying that God hides his hands in taking care of your angel. Thank you for the info. Im sending big hugs mama.
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Old 05-15-2012, 02:05 PM   #25
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Thanks for the update... We will keep you in our prayers, keep us posted!
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Old 05-23-2012, 09:10 AM   #26
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Re: Tentative diagnosis: Vein of Galen

DDC...My heart goes out to you and your family mama! Praying for you all, for comfort, peace, strength and healing. God has a plan bigger than our own, he teaches us through His plan and works miracles everyday!!
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Old 05-27-2012, 10:10 AM   #27
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Re: Tentative diagnosis: Vein of Galen

We went to the University of Michigan hospital where they did a MRI, Ultrasound, and Echo on the baby. Although the cardiologist and neurologist said they would classify her issues in the mid range giving hope that she could be okay. The OB coordinating care however let us know that she believes that there is nothing that they can do and that they baby will go into heart failure before we can reach full term. When I did not cry or get upset as she told us this she told me twice more "I want to make sure you understand that I am telling you your baby is not going to survive."

What she doesn't understand is I am not willing to accept that answer. We had U of M express mail all the test to NY. I truly believe that they will have a much better answer than "we are just going to wait for your daughter to die".

We may hear back from NY as early as tues but more likely wed or thurs given the holiday weekend and no monday mail delivery.
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Old 05-27-2012, 01:39 PM   #28
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Re: Tentative diagnosis: Vein of Galen

Quote:
Originally Posted by mmbreb View Post
We went to the University of Michigan hospital where they did a MRI, Ultrasound, and Echo on the baby. Although the cardiologist and neurologist said they would classify her issues in the mid range The OB coordinating care however let us know that she believes that there is nothing that they can do and that they baby will go into heart failure before we can reach full
What she doesn't understand is I am not willing to accept that answer. We had U of M express mail all the test to NY. I truly believe that they will have a much better answer than "we are just going to wait for your daughter to die".

We may hear back from NY as early as tues but more likely wed or t,hurs given the holiday weekend and no monday mail delivery.
Amen mama, have hope! When you love someone the only thing to do is fight to give them a chance. Your a hell of a mom already.
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Old 05-27-2012, 01:59 PM   #29
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Re: Tentative diagnosis: Vein of Galen

Praying for you and your baby, mama.
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Old 05-27-2012, 04:49 PM   #30
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Re: Tentative diagnosis: Vein of Galen

Quote:
Originally Posted by mmbreb View Post
We went to the University of Michigan hospital where they did a MRI, Ultrasound, and Echo on the baby. Although the cardiologist and neurologist said they would classify her issues in the mid range giving hope that she could be okay. The OB coordinating care however let us know that she believes that there is nothing that they can do and that they baby will go into heart failure before we can reach full term. When I did not cry or get upset as she told us this she told me twice more "I want to make sure you understand that I am telling you your baby is not going to survive."

What she doesn't understand is I am not willing to accept that answer. We had U of M express mail all the test to NY. I truly believe that they will have a much better answer than "we are just going to wait for your daughter to die".

We may hear back from NY as early as tues but more likely wed or thurs given the holiday weekend and no monday mail delivery.

Yes! have hope. My OB's told me my dd was going to die and she's 6 years old now. They would even call me at home begging me to terminate b/c she was NEVER going to make it.

They don't know everything!! Keeping you in prayer.
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