Inspired By Gisele
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April 30th, 2014

4/30/2014

5 Comments

 
    Gisele seems to be in less pain lately. She's had lots of calm awake time so it's been really nice being able to visit with her and not needing to console her the whole time she's awake. When I was outside her door earlier, trying to let her sleep, I saw flailing arms and feet and when I went in all she wanted was attention. She hears me talking outside and it's like she's saying, "Excuse me, I'm right here!!!" Lol. It's nice to see her acting like a normal baby. :)
    She might be going to the CPAP ventilator today and if she does I'll be able to hold her again. We haven't held her since the first week of March. I'm really looking forward to it.
    An MRI was done on Monday to make sure her brain was in good condition and could manage the functions of her body should she undergo another operation. Dr. Ahmad was happy with the results. He said the brain size is fairly decent, with "minimal loss" around the outer edges. He said he could barely tell there is any loss at all. He said despite everything (that has happened and is happening) her brain appears to be growing at a good rate. With the areas that got damaged he said he does not see a big loss. He also commented today that she looks very alert and seems in good mental condition.
    An MRV was also done to check the blood flow in the brain and it's good. Hematology stopped by today and said the clots are no longer problematic.
    Dr. Ahmad has assured us that he's doing everything he can to make sure he finds out what is causing the Chylo so it can be effectively treated. The challenge is that it's a rare condition with many possible causes. The team has already tried all conventional treatments and has gone as far as surgery with obviously no success. It's correct to say we're in uncharted territory. There's not adequate research/studies/information on how to stop the Chylo at this point. He is reaching out to specialists that might offer different ideas about what it could be caused from due to the niche they work in. She had a high resolution CT scan today to check for one possibility. I'm sure there are other exams that will come along in the future.
5 Comments
Louise, Tiffany's mom
4/30/2014 10:24:04 am

I think she's practicing for the Swim Team!! She's gonna be like a fish in water just like her mommy! Lol! I'm so happy for all of this wonderful news! No doubt that the Lord's healing hand remains on our beautiful little cherub, Gisele.

Heavenly Father, we ask that you would send your Holy Spirit to intercede and guide her doctors in finding the answers to help her. Give them wisdom Father. We trust you, we thank you for faithfulness. We give you all of the praise and glory.

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Brenda
4/30/2014 11:01:38 am

Thank you Jesus!
This is a wonderful update! I am speechless once again, The power of Prayer. The Lord is GREAT!

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Linda
4/30/2014 11:13:48 am

Great news! Hoping for the best. : )

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Erika
5/1/2014 02:44:10 am

Great news and I pray for the team of doctors. Your miracle baby girl is a fighter! I ask God to comfort you and Ron each day and provide you with strength and love for Gisele. SO happy you will get to hold her soon

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Polished Concrete Minnesota link
1/27/2023 12:44:49 am

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    Medical History:

    Born 2/7/14 eight weeks early with a large SCT tumor (Sacrococcygeal Teratoma) and lymphangiectasia causing severe chylothorax (aka pleural effusion).

    She weighed about 4 lbs plus the 2.5 lb tumor.

    Major five hour surgery to remove it on 2/13. Had to be resuscitated for about 90 mins when surgery was almost complete. It's a miracle she survived, and did not have significant brain damage. 

    The chylothorax caused a weak immune system and she passed away from a pneumonia infection on 5/21/14.

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