Thursday, August 11, 2011

1 week old (born with something rare)

1st off let me start this post off with a pic of our 1 week old baby girl Memphis:) She is SO SWEET! And we are so blessed to have her in our lives.



Now I want to say that I would've posted sooner, but we have been through allot over the past week. A day or so after she was born they did a Ultra Sound on her Brain. A Nero Surgeon came into our room early that morning and it just so happened to be the morning I was severely sleep deprived and couldn't think straight:(

What the Nero Surgeon began to tell us SHOCKED us. Our little girl was Born with something called "The Vein Of Galen Malformation". IT is Very Rare, and from what were told most likely genetically linked. Babies develop this in the early development stages of pregnancy.

It's a Vein in the brain that is Malformed. It is HUGE in fact, and doesn't even look like a vein. Its basically a "Aneurysm in the vein". One of the Main RISK with this is it can cause "Congestive Heart Failure". That can happen because there is TOO MUCH Blood being put off from the vein into the heart at one time.

Another Risk is hydrocephalus. This is where too much fluid builds up on the brain/ventricles. She has some of this on her ventricles. Although not enough at this point to need to put a "shunt" in.

She will definitely need surgery at some point for the vein of Galen. The Dr. wants to wait for a yr if we can because the bigger the baby the better of course when doing any surgery.

At this point her heart is stabilized and bpm is normal, so we'll try to let her grow. The Nero Surgeon wants to see her once a month, and for her pediatrician to keep an eye on her heart, head growth ex. And we're to watch for signs of anything wrong at home as well.

I'm going through Extreme Heart Breaking Concern for my Baby right now. It's late and I don't think I have much more energy to write.

If you want to know in more detail about "the vein of Galen malformation" just google it and plenty of info should pop up.

I'm asking that everyone keep us in your Prayers. I can not really begin to explain what I'm going through. Although even in this situation I am Thankful to God for Both of my Children. We're honestly going to have to take it one day at a time right now. For now that's all I can manage it seems. And just that is a huge struggle for me. Going to try to get some sleep, we have a appt in the morning with the pediatrician.



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11 comments:

  1. Congratulations on her birth!
    I am so sorry for what you are going through. I am pleased that she is doing well at the moment, but what a shock this must be for you. I am sorry that you are going through this and that surgery is on the cards. I just hope that she remains well and keeps growing and becomes big and strong before the surgery.
    She is so adorable and I am sure all will be fine. As you say, take one day at a time and give her lots of cuddles!!
    x

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  2. Oh dear, Hannah. I am so sorry. Praying for your beautiful, sweet little girl and for your heart.

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  3. I'm so sorry! She is a beautiful baby and I will pray for her and your family. Stay strong Mama. She needs you.

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  4. So so sorry, but whatever come your way your family will get through it.

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  5. I am so sorry. I will be keeping your entire family in my thoughts and prayers. xo

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  6. She is gorgeous! Congratulations on your new addition. I am so sorry to hear that she may have to have surgery at some point. I will be praying for her and your entire family!!

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  7. Baby Memphis so so beautiful! I'm praying for you all that she will grow big and strong with no problems until she can get that surgery over with. I can't imagine the heartache you are going through, the worry. You'll be in my thoughts!

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  8. Baby Memphis so so beautiful! I'm praying for you all that she will grow big and strong with no problems until she can get that surgery over with. I can't imagine the heartache you are going through, the worry. You'll be in my thoughts!

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  9. lots of prayers for you and your family

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  10. Oh Hannah, I am so sorry. Memphis is just gorgeous and perfect - a huge congratulations to you guys. But I'm sure in midst of your happiness there is a lot of worry. Just remember God has Memphis's life in His sovereign hands and works miracles every day. Praying His peace covers you and your family during this time and throughout your precious baby girl's life. Will be praying for all of you daily. ((HUGS))

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