January 2011 – Happy New Year

Lil' Sophie's 1st Christmas

As so many of you know, 2010 has been a wild ride. We were blessed with our little 5lb 4oz Lil’ Sophie this year. And we are truly grateful to have her in our lives. She’s been through a lot (she’s 11 months now and has had 10 admissions into the hospital).  At this point,  we’re happy to close the chapter on 2010 but unfortunately 2011 is starting off much of the same way. So here’s the latest update….

Lil’ Sophie is healing nicely from her heart surgery. Her heart is strong and sounds great. We’ve all been waiting in anticipation to see if her ascites would be more manageable now that her heart is in better shape. But unfortunately, her belly continues to fill with fluid. This means that even though her heart had a defect it did not contribute to this issue.

Sophie was born without a portal vein which has led to an abnormal liver and a host of other problems. One scenario she’s dealing with is being malnourished. Even though she eats really well, Sophie is not able to absorb nutrients and vitamins needed to grow and be healthy. She’s losing bone density and is borderline for rickets. She has several other issues going on because of her underlying liver problem as well. Sophie’s team of specialists are narrowing in on how to handle her rare medical situation.

Her liver transplant team has met together, and most believe that a liver transplant will be the ultimate solution for her. And she was just about to be evaluated for the list – but is now being put on hold. After the latest meeting, the transplant team decided that Lil’ Sophie needs to have surgery to put in a central line first. This line (similar to an IV except in her neck or chest) will feed her vitamins and nutrients straight into her bloodstream near her heart. They believe that bypassing the digestive tract with these fluids, will determine their path. If she grows due to these nutrients going straight into her blood then they can be sure that giving Sophie a new liver will correct her problems. If she does not grow…. we are back to the drawing board with genetics and more tests.

Bottom line, the liver team needs to be sure that performing such a big surgery, like a liver transplant, will actually work before they do it. So tomorrow (Monday Jan 3rd), we will take Sophie into the St Louis Children’s Hospital. They will administer some meds to correct her recent abnormal labs, then watch her overnight. Once her labs are stable she will have the surgery for the Central Line (the surgery will probably take place on Tuesday). We’ll be in the hospital most of the week as they work with her on administering the nutrients and meds. We’ll be taught how to handle the line at home, and she’ll be discharged with it still in her chest. The plan is for Sophie to have this line for 3 – 6 months as we wait and see if she grows.

I’ll try to send updates as best as I can from the hospital as we go along.

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~ by Jenny Bagwill on January 2, 2011.

6 Responses to “January 2011 – Happy New Year”

  1. constant prayers going up for lil sophie and you and bryce…

  2. Wow.That seems like a lot but I like there way of handling things.They want to be absolutely sure before they put her through the transplant.I wish you all the best and will be thinking of you all this week.I really hope the central line does help her.She is a strong little girl and has a great mommy.

  3. I will pass the word around out here to the people that have been praying. We will continue to boldly go before the throne in your behalf!!

  4. Jenny – thank you for the update. We’ll be praying God leads everyone in the correct direction for Sophie’s healthy life ahead! Hugs & blessings, Lee

  5. We’re in your corner and rooting for Sophie that all good things will come true! Her Christmas portrait is precious; she looks so pretty!! Love, Judy & Pete Johnson and the whole family…

  6. You are in my prayers. You have shown so much strength and courage thru all of this I truly admire you.

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