To those affected by a heart defect:

This afternoon’s operation

December 22, 2006 at 4:29 pm by Mom & Dad

As we are sitting in the waiting room this afternoon, we realize that Haven doesn’t just have one invasive surgical operation within her first two weeks of life, but three. She came through her Norwood Procedure last Friday (surgery #1), then shortly after she was put on the ECMO cardiac support unit (sugery #2). She had a little bit of a questionable evening last night, but was back at steady levels all through this morning. By lunchtime today, the surgical team and other professionals decided that it would be in her best interest to be taken off ECMO support this afternoon (sugery #3). This is just as scary as it is a step forward. Obviously, coming off of ECMO support is a step to complete recovery, but at the same time, the ECMO unit was some what comforting knowing that it was in charge of her frail little heart and getting blood to her body. The doctors are ready to see how she will handle her own cardiac support and the next week or so will be a lot of waiting (as was this week). Hopefully, she will be able to sustain things on her own without the ECMO support. Thank you for the cards, letters, gifts, comments, and emails. Receiving those serve as continuous emotional support for us. We’ll try to put up a post this evening after the operation to let you know how things went.

Posted in Recovery #1, Surgery #1 - Norwood | 6 Comments »

6 Responses

  1. The Myers Gang Says:

    Jeremey, Alison and Haven, as always may God be with you and be your strongest sense of support, there is not an hour that doesn’t go by that you three are are not in our thoughts and prayers.We Love you soo much.

  2. Uncle Justin Says:

    We’re behind you 100%! You can do it Haven Leigh!

  3. Gr. Grandma M Says:

    I am still praying for you Haven. Your Cousin Mike Murphy called today and said he would be praying also. Your Gr. Grandpa Johnson sent a card and is praying too. Just like Tammy told you. You, Jeremey, Alison & Haven, are never out of my thoughts and prayers. Love, Grandma M.

  4. Justin Says:

    Good Morning Haven, Jeremey, and Alison!
    Make sure you eat a good breakfast you’ll need it to help recover.

    We love you!

  5. G.G.Uncle Virgil 'n Aunt Bonnie Groff Says:

    You all are in our prayers. It would be pretty hard not to have you in our thoughts continually. We know what it’s like to go through some stressful times, but God is always there. It’s so nice to know you love and trust Him in everything.

  6. erika Says:

    Hi,

    I found you through a site for HLHS blogs. Our son is 10 months, DORV/HLHS, post-Glenn. We were just where you all are now – it seems both like just yesterday and so long ago at the same time.

    We’ll keep you all in our thoughts. If you need anything – PLEASE email. Having other HLHS heart parents there – on the other end of an email, a phone call – made such a difference for us.

    -Erika
    Mama to Sammy, post-Glenn, Children’s Hospital Boston
    http://www.babysamson.com

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This site contains the story of Haven Leigh and serves as a source of hope and encouragement to anyone who has or knows a child born with HLHS, a congenital heart defect, or other terminal illness. Here, we show the rewards of nurturing and supporting a special child while celebrating her memory by sharing her story with others.

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