Saturday, March 28, 2009

First Cuddle





Today was so awesome!  We got to hold Ava for the first time, and it made us melt like a frosty on the pavement outside a Wendy's in San Antonio during August.  The nurse was so nice and helped us hold her.  She periodically checked her belly button IV and temperature to make sure she was remaining stable.

This event was due to her baby steps progress.  It is actually a small miracle that her heart has been cleared.  The postnatal duct in her heart has closed and the resulting bloodflow is normal!  The cardiologist feared and expected that the resulting aorta would limit circulation to her lower extremeties, thus restricting her activity including feeding.  Since that is not a problem, she has begun feeding today on formula and Terah's milk.  (Thanks Terah!)  She hasn't eaten much because she was sedated for a procedure last night.

She required an MRI to investigate the cysts in her brain as seen on an ultrasound image.  These pockets of fluid should not be there and may be causing "itty bitty" seizures.  Every so often she flinches and shakes her right arm.  They have given her medication which reduces these episodes, but the NICU team is not sure what the cause is and if there are any negative effects.  The preliminary results of the MRI show that there are two fluid pockets in her brain and pocket of blood at the back of the brain stem.  The latter is probably asypmtomatic and many normal babies have this without symptoms.

Speaking of normal, she is peeing and pooping like a champ.  She has duplicate collecting systems from both kidneys and a ureterocele that is causing flow problems, but her function has been good so far.  On Monday, she will have a procedure to track the flow of the urine to see if it is backing up into her kidneys, which is problematic.

Overall, we are very happy with her progress although it seems that the docs are giving us curveballs at least once a week.  She is bigger than expected, her heart is healthy, she is peeing and pooping, and we got to hold the little angel today.  Thanks again for all the love, support and prayers!

13 comments:

  1. OH WOW!!!! I AM SO HAPPY FOR YOU!! YOU LOOK AMAZING AND YOU ARE SIMPLY BEAUTIFUL IN THOSE PICS!! AND THE FACE ON THAT BABY IS ABSOLUTELY ADORABLE! I'M SHAKING I'M SO HAPPY FOR YOU! CONGRATS AND CALL ME TOMORROW! LOVE YOU!

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  2. Rett, you are doing an awesome job with the info on the blog! Keep it up!! You rock!

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  3. Yeah! I'm so glad to hear you got to hold your precious baby! When I talked to you a few days ago and you mentioned that hopefully in a few weeks you could hold her, my heart was aching for you. So, I'm so glad to hear that you've gotten a chance to finally hold her. Thanks for all the updates! We miss you guys terribly.

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  4. Terah posts a lot, so obviously she rocks too, and for other reasons as well.

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  5. Yeah, for Ava! I told you these special little people are amazing! It is like walking down memory lane, reading your blog. Addie had so many of the same test etc--only she was 10 month instead of 10 days! What a blessing to know ahead of time and be able to help her from the start! You are doing great! Enjoy each little day, but it really is a gift!

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  6. That is so wonderful. Glad to hear all the good news.. Erin

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  7. Hi everybody, congrats on the new addition to the family, beautiful Ava. We are happy to hear about the progress Ava is making, and we will keep you in our prayers. May God give you the strength you need at this time. Love the name you gave the baby, after Grama Kathy. Enjoy your visit with Grama. Love from Uncle Mike & Aunt Shirley in Alaska

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  8. Well well well, welcome to the club of Princesses! You certainly are very deserving of the noble title - look at all the progress you are making already!

    Mama told me to tell your Mama that if she wants to chat (my Mama gets very Mother-hennish with fellow Mama's of Princesses with Jacobsens Syndrome) then she is to feel free to contact her on this email alisonbernardkeene@live.fr. There aren't many JS Mamas out there, and it can be comforting to meet others. She also wanted to add that I had seizures as a baby and have overcome them completely, although I still take the medication (Sabril).

    The Bernard Bunch has warmed to you so much little girl! What a splendid beauty!

    Princess Abigail in France.

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  9. OOps, I forgot to add : Mama keeps a whole hoard of blogs, for my brothers, for her dolls collection (what a weird hobby, although I'm just starting to enjoy it cos it gives me lots of Princess fun!) so just to help you find my blog, this is the url : The Bernard Bunch www.thebernardbunch.blogspot.com
    Looking forward to seeing you there!
    Princess Abigail in France
    (another little girl with Jacobsens Syndrome)

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  10. Hi, Terah,
    Congratulations on Ava's birth! She is very beautiful.

    I think I've seen/met you at a therapist meeting locally - ? Princess Abigail's Queen Mum sent me a message to direct me to your blog. I blog, too, and Abigail's Mum and I are a mutual admiration society.

    I would love to talk with you personally...you should have access to my email through this comment.
    Barbara

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  11. She is so precious! I'm so happy that you were able to hold and cuddle her!

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  12. This post brought goosebumps to my body and tears to my eyes! What a huge blessing and miracle!!! Thanks for keeping us all posted on her progress...we love you all!

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