Tuesday, October 23, 2012

Getting Closer

Today we found out  Teresa had been offered a heart but her Doctors had to turn it down because they felt the heart was not  a good match for Teresa .  Because of her pulmonary hypertension  she will need a very strong heart that can beat against the high  pressure .
 So we continue to wait.
 
We are now visiting CHOP every week for check ups.  Todays visit did not help to alleviate any of my fears .  Teresa's heart continues to deteriorate . She also has a very minor cold ( actually just a slight stuffy nose and minor occasional cough ) but it is affecting her O2 levels and causing her to retain too much fluid .
On days like this it is hard to wait .  Her little body is getting very tired .  As she lays here sleeping next to me I am filled with so many emotions , mostly fear .   How do you prepare for a surgery that could take her life  BUT at the same time  is the only chance to give her life ?






Teresa's favorite saying is " I love you more ".   This is our daily ritual filled with  hugs and kisses.  As I say " I love you " , she always says  , " but I love you more" .

9 comments:

  1. I don't know how well I'd deal with what all of you are dealing with on a first-hand basis, but I think I know the answer to your question about "how do you prepare..."

    You pray. You hope. You refuse to give up. You refuse to allow the fear to define your life. You keep believing.

    You keep doing what you've all been doing as long as it takes, with the knowledge that there are lots of people "out here" doing as much of the same as they can.

    We got your back. You do what you gotta do.

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  2. I don't know how to guide you - but I do know that you are finding the way - and you can tell when you look at the face of that child - you find the way every day!

    hugs - prayers - aus and co.

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  3. We continue to pray for Teresa and you all! I love how she says "I love you more". I immediately thought, "And GOD loves you BOTH more than you can imagine!!!!"
    He is with you....

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  4. This brought tears to my eyes. Continuing to pray for your little fighter,who has overcome the odds so many times. Praying for your strength through this all.
    God bless and keep you all.

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  5. Sweet Teresa
    You are so, so beautiful, I could just stare at your sweet picture all day long. I love your sweet little smile so much, it just brightens my day. You are truly a gift sent from heaven to brighten this world. Your family must be so blessed to have you in it. Keep fighting little girl and boss that heart of yours to stay strong. I will keep praying for you and your family.
    HUGS:)

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  6. I don't know Ann. I haven't figured that question out yet. I am TERRIFIED about our baby girl's surgery. It is not as risky as a transplant, but I am so scared too. Her heart is unique and twisted and upside down and single ventricle ... and I am just plain scared.

    I don't think you can prepare. Just keep taking one step forward. That is all you can do. And trust God. He never seems more real to me than we are facing another heart surgery.

    I pray He feels very close to you all right now. Only God, that about sums it up.

    Many heart hugs and prayers from TN.
    And btw, could Teresa could any more beautiful?! Oh my. She just RADIATES!

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  7. Oh how your precious baby girl (ALL of your family) has been on my heart...

    Sending Love and Prayers and Every Best Wish from TX

    Amy

    GOD IS BIG ENOUGH!

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  8. Thank you so much for letting us know how things are going, I'm sorry its so hard. You have shared so much about your family and Teresa. Every post I read I feel like I am being blessed to be a part of something very special.
    Take a deep breath and continue to do what you have been doing, loving Teresa each moment. In the end all we have are moments and really all there is, is love. I am learning from you and Teresa to do just that. Sending love, payers and support.

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  9. On a good note though you know she is still doing OK because they aren't keeping her permenatly in the hospital. Keeping your sweet one in our prayers. Hugs from one heart mom to another.

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