August 2010 – iBaby – It’s A Hard Week

 

A Hard Week

 

Well, this was a hard week for us. We met with Sophie’s GI Specialist. She believes Sophie needs a liver transplant. But since lil’ Sophie is extremely high risk she wants us to meet with a surgeon in Chicago about possibly putting in a shunt first. The shunt would go from her heart to her liver to act as the portal vein that she was born without. But she’s also high risk for this procedure too and the Chicago team may turn us down. All procedures on the table are extremely risky at this point. But if we do nothing Sophie’s blood flow issues will eventually over take her. Needless to say, this weeks news has been difficult to take. We are still praying for a miracle. Or at least some guidance through these life (SAVING) threatening decisions that we have to make.

I should also add that Sophie’s 6 month follow-up visit gave us mixed news. The good news – Sophie’s chromosome test turned out normal. The bad news – Noonan’s Syndrome and now Alagille Syndrome are on the table. We thought we were in the clear. But during a future hospital visit Genetics wants to draw blood to check for these. We are praying against any kind of syndromes – especially these!

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~ by Jenny Bagwill on August 21, 2010.

12 Responses to “August 2010 – iBaby – It’s A Hard Week”

  1. It has been very tough. Nice summary Baby.

  2. I will continue to pray for Sophie and your family. I know God is with you through these difficult days.

  3. I will also be praying for her and you and your family. Thanks for sharing and may God continue to be with you all

  4. I’m so sorry that your family is going through this. Sophie is blessed to have such strong, loving, devoted parents. Your family is in my prayers.

  5. Bryce and Jenny what an adorable little baby girl. Jerry and I have tried to keep updated through Mandi and Beth. We have and will continue to pray for baby Sophie. We have put in prayer requests through our church as well. And we, too, will pray for that miracle!!!!

  6. God has given Sophie the most incrediable parents. Just know that many many people are thinking of you – – – you are never
    ever alone – your always in my thoughts and prayers!

  7. Hey guys. As always, you have done an awesome job with your gift of technology as this blog is beautiful. Even I could maneuver around it – so you know it’s good!! You all continue to be in our prayers and on the church prayer chain. In the midst of trials and all the uncertainty it is easy to give in to fear and doubt. Just remember that God knew Sophie before He created the world. He knew the days ordained for her, and he knows how many hairs she has on her head (even if we are disappointed they aren’t red.) Rest in the assurance that He loves that precious little girl more than any of us!! In everything, this is still the day that the Lord has made, we will still rejoice and be glad in it. We love you guys, and can’t wait for some more family time 🙂

  8. Bryce and Jenny, I am sending special prayers your way. It is hard to know why God gives us these trials in life but know that you have many friends sending prayers your way.
    Sincerely, Melissa

  9. Jenny,
    I’m sorry that things have been so hard on Sophie, you & Bryce. We’re praying for you guys and will be following your updates to see her improvements.

  10. Lil’sophie is blessed to have you in her life. You both are amazing parents and wonderful people. Sophie has the most amazing little smile. I sincerely hope things swing your way.

  11. We are covering you all in prayer! Believing with you for a miracle!!!

  12. Hello. I am a friend of Sophie’s Aunt Beth. I have a 13 yr old “heart” kid. We have been in the spot where we were told “sorry, we cannot help him” from several hospitals. Then we did some research & ended up at Boston Children’s Hospital. Zach has been through multiple cardiac procedures that allow him to live a great life with only some physical limitations. There may be help out there. The key is finding the correct center. Zach was tested positive for Allagille Syndrome a couple of year ago -although I have to say it just gave everything a name & didn’t change much for him in the way of treatment. Your Sophie looks like a little doll & I pray you may find some answers soon. Please feel free to contact me at any time.

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