September 2010 – Matters of the Heart

Daydreaming

As we close out September it’s becoming more obvious that we need to focus on Lil’ Sophie’s heart.

Here’s a quick run down of what we’ve learned this month.

Chicago specialist who would have put in a shunt: He went over all of Sophie’s information and provided us with a second opinion that mirrored her St Louis specialists. Basically, he could not insert a shunt to help her liver until Sophie’s heart valve is working properly.

St Louis GI specialist: they believe that Sophie’s heart is possibly contributing to the fluid in her belly. And if the valve in her heart is fixed the asites (back up of fluid) will be less aggressive or possibly even go away. Once this happens they can concentrate on her liver.

St Louis Cardiologist: they disagree with St Louis GI specialists in regards to the asites. Although Sophie’s pulmonary valve is showing signs of deterioration and needs to be replaced, they don’t believe the back up of the pressures in her heart are significant enough to be the source of Sophie’s belly fluid.

The 1 thing that ALL the specialists agree on is that Sophie will need a liver transplant in order to thrive. And they ALL believe that her current heart valve will diminish her survival of a liver transplant at this time. So the next logical course of action for Lil’ Sophie is to have an open heart surgery, in which they will give her a new valve from a donor. Once successful, Sophie will be added to the liver transplant list.

Sophie’s heart surgery is scheduled for October 22nd at St Louis Children’s Hospital. The minimum estimated time of recovery is 7 days in the hospital. And another 2 weeks at home. So we are gearing up for this next – very scary – step.

Lil’ Sophie has officially crossed the threshold of 9 months with all the gnawing and drooliness that teething brings with it. Although we have not seen a glimmer of those first pearly whites, she’s clearly uncomfortable and is shoving anything she can in her mouth (except food!!!) We have been trying to introduce her to new foods but so far all attempts have been greeted with great disdain. But we’ll keep at it.

We ask that you please keep her and us in your prayers as we approach Oct 22nd.
We really appreciate it.

Bubbles

Snuggly Clean

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~ by Jenny Bagwill on September 30, 2010.

12 Responses to “September 2010 – Matters of the Heart”

  1. Even though I have never met Sophie in person, I love her. I will continue to pray for her and for God to give you both strength. Sophie is a beautiful little girl – there is an old soul behind those gorgeous eyes…love you too, Jenny!!!

  2. Thank you Jenny for sharing this. I will send this out to the prayer warriors I know. We love you all. Mandi

  3. Bryce & Jenny – the Lord has placed Sophie in your good care and whatever’s ahead, He will be there with you. Our prayers are our thoughts are with you all!! Love & blessings, Lee

  4. Hang in there sis, let us know if you need anything. We are all praying

  5. Good luck to all of you! My little nephew seemed like a new baby within days of having his open heart surgery in June, at three months old. Though he and Sophie have different issues (he had only Tetrology of Fallot, no liver issues), I sincerely hope that you have a similar experience with your little one.

  6. Jenny, Sophie is absolutely precious.

  7. Praying for Little Sophie… and for mom, for dad, and for her doctors and care takers at St. Louis Children’s Hospital.

    Sending love and encouragement all the way from San Francisco. 🙂

  8. And P.S. That kid is cah-yute! 😉

  9. We will keep praying for Sophie and you all. It is so hard to be a parent who would willingly give anything for their daughter and not be able to fix the problem. May God grant you peace, strength, and mercy.

  10. Our family will be praying for your adorable lil’ Sophie!

  11. Thank you for visiting the House. I’m sorry that you found us through such a sad entry. Sophie is absolutely beautiful and she looks like one tough little cookie. We’ll be thinking of you and sending lots of peaceful healing thoughts your way.
    Would it be okay if I added a link to your blog on mine?

    • Thank you!
      Yes, you can link to mine.
      I’m hoping to connect with more people who know what it’s like to deal with CHD and also parents of children that have dealt with liver transplants.
      We have a long road ahead, but I’m hoping that some how through it all we’ll be able to help or encourage others who’ve also had to deal with these life changing issues.

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