Tuesday, April 14, 2009

Daily Dose: Tuesday, April 14

Hope had a good day today. She is now up to the weight of..... 2750 grams. She did well with her feeds today, but still had a few of her episodes. She seems to be low on blood, which normally would initiate a blood transfusion, but since she is now making her own blood the doctors want to see if she can "catch up" on her own.

Also today Hope had a sweat chloride test. This test is used to confirm that she doesn't have cystic fibrosis. But..... she couldn't sweat enough so they couldn't do the test. Obviously the doctors and nurses are unaware that beautiful baby girls like Hope don't sweat... they glow! So maybe she will have her "glow chloride test" later.

Hope's Mommy has been feeling a little (or a lot) under the weather since yesterday afternoon so keep her in your thoughts as she is trying to get better so she can continue to care for Hope and spend time with her. Hopefully tomorrow afternoon she will be back up to speed.

Now time for some editorial from the blogger (me). I know that everyone just loves to watch the progress Hope has been making, via the blog entries, but also the pictures. Well, I can honestly say that I am enjoying it more than anything!! Everyday that I'm not with Hope I can't wait to get her daily picture in my inbox. Today's picture, for whatever reason, just really hit me. She is a miracle, in every sense of the word. Look at her! She is truly amazing in every way. From her big bright eyes, to her reddish/blonde hair, to her little tiny hands and feet. For those of you who know me, it is a very rare day for me to be at a loss for words, and in fact, I can't remember a day when I have been at a loss for words. But tonight I'm at a loss. I can't begin to express how much this little tiny neice of mine has made an impact on my life. How she came into the world in a hurry, a little teeny tiny bundle of Hope. And how she has fought through what many would say was one unbeatable battle after the next. I know, with every ounce of my being (and I have quite a few more ounces than Hope does), that she is going to be ok, and she is going to grow up to be a beautiful person who will have one heck of a story to tell, and I am just proud that I can be part of her life. And that... that doesn't even begin to describe how much she means to me because for once, I am at a complete loss for words.


  1. I just need to get on that bandwagon with you Emily, with another thought on this wonderful little girl. She is an answer to many prayers, and just as beautiful as God intended her to be. I get goose bumps reading what you wrote, because I think of all the precious babies that were not allowed to get the chances Hope did. God Bless you Hope, and get your Mommy better soon!! Aunt Sue


    some time back
    came across this blog http://www.hoperobinson.blogspot.com/
    am touched by how her parents are fighting for her
    just hoping for a miracle to happen

    though we are of different religious beliefs here
    but the one common thing that stands out in the blog -
    is the word 'hope'
    in this single word, i've found myself many miracles

    am praying for hope to be the next!

    my fave part of the blog:
    What is Hope?
    Hope is not blind optimism.
    Hope is not sitting on the sideline or shirking from a fight.
    Hope is that thing inside of us that insists,
    despite all the evidence to the contrary,
    that there is something greater inside of us.
    ~Barack Obama~