August 2010 – Good Days & Bad

Sophie playin' with NTSC

Despite Sophie’s belly fluid issues, she’s been in pretty good spirits. Lots of cooing, smiles and a general sense of playfulness. There have definitely been a LOT of good days this month.

Unfortunately by the end of August her belly was getting too full. Lil’ Sophie had to be admitted to St Louis Children’s for an infusion of strong diuretics and over night monitoring. This process was supposed to only last 24 hrs. But this time her body wasn’t responding as quickly as it has in the past. After 4 days one of the nurses noticed that the IV administering the medication into Sophie’s foot was not inserted all the way. It looked as though it had leaked into all the bandaging & and was really hard to detect. Thankfully it was caught. Once a new IV was inserted and another dose of meds given, her belly started going down rather quickly and she was released.

While she was there the staff also drew blood for the genetic tests to check for Noonan’s and Alagille syndrome. We’ll know the results in a couple of months.

Next week we will have a discussion with Sophie’s heart specialist to go over the results of her last cardiac cath. We need to know the risk of future procedures and how/if her heart can withstand the corrective surgery that needs to take place on her heart and liver.

We’ll also meet with a specialist in Chicago on Sept 14th to talk about the possibilities of putting in a shunt from her heart to her liver. This could relieve her body from the defect of being born without her portal vein. However, this surgeon has heard of Sophie’s issues before and turned her down because she was too high risk. Now that we have a lot more information about what’s happening inside her little body we’re going to see if he’ll reconsider. If he decides he can not help her it’s likely she will be put on a liver transplant list.

We have a lot more discussion and meetings regarding her future plans. But it seems as though we’ll know more by the end of September.

Sophie’s officially 8 months but still a little peanut weighing in a little over 9lbs. But that doesn’t stop her from being busy and curious about the world around her.

Yummm.....

Jumpy, jump, jump

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~ by Jenny Bagwill on August 30, 2010.

6 Responses to “August 2010 – Good Days & Bad”

  1. Praying for you every day!

  2. What a precious little girl!!! We will be praying for good news this month.

  3. Jenny, Bryce and little peanut Sophie, I have all of you in my prayers for betters days ahead. Sincerely, Melissa Scheuer.

  4. Sophie is so sweet. Would love to see a video of the happy little girl. I have you in my prayers.
    Hugs Shelly

  5. Looking at these pictures show that Sophie is a HAPPY little 9# ‘peanut’ … PTL! She knows nothing but the love and dedication of all who surround her. She’s a lucky little girl and I pray it will be nothing but good news & LOTS more sweet smiles ahead!! Big hugs for you and peanut hugs for her 🙂 Lee

  6. Hi Jen, I just wanted to tell you that we are praying for Lil Sophie as well as for you. She truly is a beautiful baby. God hand picked you to be her mother. She could not have been more blessed. I know that God has your little angel firmly in his hands. He can heal her and to this end we are praying every day. With love in Him.
    Tracy and Frank

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