Tuesday, March 10, 2009

Ava Reber

 Heres the newest 3-d picture of our little one. Most of you know already that we have named her Ava, so the cats outa the bag!

Im sorry i have not posted any new updates until now, but I couldnt bring myself to type out all of the problems that have occurred.

We found out that Ava has Jacobsen's syndrome. A very rare genetic condition where she is missing the end of her 11th chromosome. This explains the problems that have already been found (the heart, kidney and bladder probs).

Last friday I went in for a fetal MRI and discovered that she has also experienced some brain damage. The cause is thought to be from her having mini strokes due to blood clotting. It is hard for the doctors to say at this point what this damage effected or what the result will be. Hopefully we will recieve more answers today.

But the decision has been made to have me enduced a month early and so far we are looking at march 19th for delivery date. With Jacobsen's babies thier growth is stunted and with Ava she is barely growing at this point. So there is really no reason to keep her in.  We feel it would be best to get her out and get her some help. 

The doctor's have been awsome as with everyone around us. We appreciate the support and kindess. At this point our hearts are breaking for her and just hope it all turns out ok. If you want some more info check out these websites. the first one is a site put together by those with JS kids and the second is a pamplet the genetic doctor found for me.



We love you all - feel free to give us a call. Love the Rebers

11 comments:

  1. I am so sorry this is happening to you and your precious little family! You are all in our thoughts and prayers! I don't know what I can do, but if there is anything, please let me know! I know God is right there fighting with her, making her strong! :o)

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  2. Terah, I don't know if you remember me. Sarah Jenkins, now Sarah Merritt, from Elko.I just found your blog and I want you to know I'll be praying for you and your family.

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  3. So heart breaking. But it must be helpful to finally get some answers? She is a chosen spirit and we will all love her no matter what!!! Your family is in our prayers daily. Love you guys!!

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  4. Terah, this is Jessica Croft (Michelle's Sis n law). I hope you don't mind that I am following your blog. You guys are in our thoughts and prayers daily. Ava is such a beautiful name, what a blessing to have her in your family :)

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  5. Love the name Ava. I'm sorry to hear the trials your being put through right now. Your always in our prayers & I know that things will work out for you. Miss you guys tons!!

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  6. Hi Terah, this is Shaina Adams. I found your blog through anothers. It is wonderful to catch up with your family, Eliza is so adorable and grown up! Sorry to hear of all your struggles but I know that Ava is coming to a wonderful family! You are in our thoughts and prayers.

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  7. Hey, pretty girl!! I love you and wish I could be there with you! I want to give you a big bear hug! Anything you need... just name it! I'd do anything for you!

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  8. I loved all of those sleepovers as well as the T.P. Your family really is cute. Just so you know and you can put it on your blog my husband's name is Chad.

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  9. Oh, Terah. I'm so sorry for what your family must be anxiously feeling and awaiting. Ava looks so precious and beautiful. I will continue to keep you in our prayers. I'm glad for next week to come, she will be well taken care of by great doctors. Hang in there and know that Heavenly Father is with you every step of the way. Love you...
    Steph

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  10. Hello Terah this is Erin the owner of Jacobsen Syndrome Awareness. I just wanted to come and give you some support. My Olivia is a JS baby and she is a blessing. She just turned 3 yr old. Olivia has 11q24. You can email me with any questions that you want. I can help you out. There are some Yahoo Groups you can join that have other parents of JS kids. They have lots of info. They were a huge help. Here is my blog if you want to follow it... http://thekewers.blogspot.com/ Ill be back on to check on you.. Good luck with the baby. Cant wait to see pics

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  11. We love you guys! You will be the best parents for Ava! With Rhets spirit and your mothers fiestiness you'll do a great job Tereh! We love you all and our prayers are with you and your family! Nick & Erica

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