April 2011 – Listed!

I'm ready to be shipped. What's your address?

It’s official!

Lil’ Sophie has been approved and placed on the liver transplant list. This news has been a long time coming but still brings a host of mixed emotions. We’re excited about the opportunity to dream of a life for her beyond constant medical care. But of course, we’re apprehensive since she’s proven to be such a high risk baby for such an intensive surgery. It’s extremely scary. Sophie is failing to thrive and if we don’t take this risk it’s understood that her life expectancy will be cut short. So with much prayer, we’ve decided to go forward with this next step. Please continue to pray for wisdom and clarity for us and her medical team. This is the biggest decision we’ve had to make so far and we need God’s guidance every step of the way.

It is also a bittersweet decision knowing the gift of a liver means another child had to pass away for her to have this opportunity. Please be praying for the grieving family that will have to make such a hard decision during the worst time of their lives. Our hearts break for them. What an honorable decision made at the worst possible time. They will need your prayers too.

Our transplant coordinator gave us a run down on what to expect. We’ve been instructed to immediately pack a bag for the hospital, never turn off our cellphones….and wait…

It can happen at any time – from a few hours to several months.  The St Louis Children’s Hospital’s average wait time is 3 months. However, Sophie’s needs are very specific (she needs the liver AND the portal vein). So they can not accept a cut portion from another donor liver. Her surgeon told us that he is going be extremely selective because of her unique medical issues, and may have to pass on several offers before he finds the right match. Because of this, we’ve been told to expect false starts. We may get “the call” that they have a liver, but find out many hours later (after we’ve been at the hospital for a while) that it isn’t a good match. So don’t be surprised if our updates include being sent home without any procedures taking place.

We’ll keep you posted as we walk through this journey. Thank you so much for your thoughts, prayers, and encouraging words. We are so grateful!!

Dreamin' of my future

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~ by Jenny Bagwill on April 29, 2011.

7 Responses to “April 2011 – Listed!”

  1. Wow.It truly will be a roller coaster ride for you all.We will be praying for you everyday.You are such great parents and have a very special little girl.Thinking of you everyday.

  2. She is so gorgeous I can barely stand it! I’m so glad she’s on the list, I hope the (right!) call comes for her soon. 🙂

  3. Congratulations, Sophie-in-the-box! Our thoughts are with you 🙂

  4. There is uncertainly ahead – but God’s plan for Sophie is certain!! He is preparing the way & will guide every step! Our hearts & prayers are with you … take care & God bless – Lee

  5. Please know our prayers are with everyone including the Dr. and medical team. God be with all. Sandra

  6. I can’t imagine what you all are going through. The excitement, the uncertainty, anticipation, fear, and hope floods my thoughts as I think of your family. I will be remembering your family daily in my prayers.
    Love you guys!

  7. […] officially placed on the Organ Donor Transplant list for a new liver. This morning I went back and read about it here. It’s an awesome feeling being on the other side. Especially since her doctors were very […]

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