Nora had a great week!

In the words of Aunt Jenn, “Nora + Omegaven = Awesome!” Nora’s Bilirubin is down to 1.7 and she is doing great! Her liver enzymes are down as well and her AST number is even in the normal range. We could not be happier! Nora’s liver has not been this healthy since she was born and first put on TPN.

Here’s a little recap of Nora’s week………….

Nora practicing creeping on her tummy and push ups…….and feeling very proud about it. :)
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Happy and cute after an afternoon visit with Grammy and Grandpa on Sunday.

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Nora sporting her baby robe awaiting for her numbing cream to take effect on needle changing day.

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I’d seen these cute little baby robes for years and always thought how cute but what does an infant need a robe for? But it is the perfect solution for needle changing day! Every Monday Nora gets her port needle changed…the routine is disconnect from TPN, flush the port, take out the needle, douse the skin covering the port in alcohol and give the skin around it a good cleaning as it only gets a break from the tape dressing once a week, give Nora a good scrub down (the bath once a week where we don’t have to worry about not getting the dressing wet) and then put numbing cream over the port where the new needle will go in and cover it up with some gauze so the cream wont get all over her chin, which somehow it still does anyways. The numbing cream takes 30-45 minutes to take effect (which works wonderfully by the way, Nora never feels a thing) so in the mean time I used to wrap Nora up in a blanket instead of dressing her because the numbing cream tends to slide down around the port instead of stay on top of it because it’s raised and we’re just going to undress her anyways when her fabulous nurse Virgina puts the new needle in. But it was a challenge to keep a wriggly little muchkin wrapped up but now the robe takes care of that! (and she looks darn cute too) :)

Nora and super nurse Virginia after putting in her new needle.

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Snuggling it up with Normal Norman, her Shadow Buddy, after some serious play time and running around in her walker.

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Oh so sleepy………..

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6 Responses to “Nora had a great week!”

  1. Aunt Jenn Says:

    Sounds like a great week indeed! I love all of Nora’s expressions! And I agree completely about the baby robe…I’ve been bewildered by their purpose until now too! :)

  2. EMILY BROWN Says:

    That is a great bilirubin! I am so happy for Nora. This is definetley a great answer to prayer. I know you both couldn’t be happier! Have a wonderful weekend.

  3. aunt brenda Says:

    It’s great to see Nora “on the move”! It makes me aware that she’ll soon be moving a LOT on her own. You know that Dr. Seuss book, “The Places You’l Go”? Good luck, mom and dad! :)

  4. Beverly Davison, RN Says:

    Hey ya’ll,
    Just look at that pink little girl :) . The news is all so wonderful. While you are giving out kudos to the great medical care, never forget that without the two of you for parents Nora would have had to face a much more difficult life. You are absolutely awesome with your precious little one. As a family, you ROCK!
    Hate to bring up that orange color again, but will you be making a fall trip to ‘the pumpkin patch?’
    If so, I’d love to see some pictures because no matter how pink she gets she will always be my little pumpkin!
    XXOO
    PS: Keep up the tummy time, can’t stress how important it is to overall development.

  5. emily smith Says:

    Hooray, from Ky. We are all so glad she is doing so well!
    What a beauty! We all hope that she continues to do so wounderfully. And mom and dad you deserve a big pat on the back for all you have done. We all love all of you lots!
    Emily, Nana,Grandaddy, aont B, Jimmy, and the kids.

  6. Uncle Kia Says:

    Only 6 months and she can do a better push up than I can!



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