Sobering news from our MD

Posted by Erin Wilson On Thursday, July 30, 2009 7 comments
We've had a tough couple of days of news here. We had a long talk with one of the Peds Caridologist yesterday that was a reality check. She sat down with us to talk about Josiah's immediate concerns and his long term prognosis. Basically his immediate concern was this infection that he has. No big surprise there. What was hard to swallow was her opinion of his long term prognosis. Basically, her words were that Josiah's long term prognosis still in not good. The way she said it made both Milo and I realize she was very serious and needed us to know that Josiah is nowhere near being out of the woods yet. I asked her what the outcome of any other babies who had come through here with HLHS and an intact septum was. Her response was that in the 4 years that she has been here, Josiah has made it further already than any other baby. That was a shock to me. The MD told us that with the intact septum, Josiah was dealt a very short stack. That the complications that come from the intact septum are extremely hard to overcome. I don't want to go into detail on all those complications, they are the things I have been describing for several weeks now. The point in all this is that Milo and I went from thinking it was just a matter of time before we could bring Josiah home with us to moving back to wondering if we will take him home with us.

The thing is none of this changes anything at all because God gave Josiah this heart and this life and He will orchestrate the outcome. For weeks now I've been longing for the day we can bring Josiah home with us. I am determined now not to long for that but to live in this day. The day that we have with our 2 beautiful daughters and our miracle of a son. I will treasure the drawings Daylia hung to welcome us home on our apartment door. I will enjoy and laugh when Hazyl covers her entire body in Sharpie marker. I will cherish the amazing moments gazing into Josiah's eyes while I stroke the top of his head. God has given Milo and I so much. I am determined to be grateful for every bit of it even HLHS. In an attempt to be transparent I can honestly say that I'm not there yet but hope to be one day. Where I know I am right now is that I love all three of my children and my amazing husband so much and I'm incredibly grateful for every moment God allows me to have with them even these very difficult moments.

7 comments to Sobering news from our MD

  1. says:

    Beaufort SC Psalm 28:7
    The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

    Love You Guys Marc n Marge

  1. says:

    ali i am in awe of your attitude. you guys are inspirations in that you can find joy in these difficult times. extra hugs all around!! (and the pics of hazyl are priceless!)

    saying daily prayers for you all, as always.

    alison

  1. says:

    mom2lo Erin,
    My heart breaks for you at the news you heard but I am so encouraged by your faith in God. He will never let you down! He does have a perfect plan and purpose for little Josiah and you ARE blessed to share each and every moment with him!

    Did you get my email earlier this week? I'd love to write a post about Josiah on my blog and ask for family and friends to pray for him. Please let me know if that'd be okay.

    I will continue to pray for Josiah and your entire family! God is in control! He knows your needs!!

  1. says:

    Anonymous "The Lord is at my right hand...I will not be shaken!" Please know that my family is praying hard each and every day for little Josiah.

    Lifting you to the King,
    Abbey Cooler and Ava

  1. says:

    Anonymous Erin and Milo,
    Little Josiah continues to be in my thoughts and prayers. Your courage, your ability to see the beauty and miracle in each moment, and your willingness to accept God's plan for your family brings tears to my eyes. You both are truly a testament to what it means to have faith in God. My heart goes out to you! Marisa

  1. says:

    Anonymous "May the God of HOPE fill you with all JOY and PEACE as you trust in Him, so that you may overflow with HOPE by the power of the Holy Spirit." Romans 15:13

    On our knees for all five of you!
    The Sorrells Family

  1. says:

    Anonymous We are continuing to pray. We love you guys and hope to visit when we are down in August. Stay strong and enjoy each moment with Josiah and the girls.
    Shaneki

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