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Mon, May 05, 2014

5/5/2014

9 Comments

 
The Broviac came out without complications. Yeah!
Overall she's had a good day. Rough start but had some calm awake time today before the procedure. Hopefully she gets lots of uninterrupted rest tonight.
9 Comments

Sun, May 04, 2014

5/4/2014

1 Comment

 
There are no changes since my last post, except her Broviac is somehow stuck. It might be relatively uncomplicated to remove. We'll know tomorrow when Dr. Guner and Dr. Gholizadeh go in to remove it. Please pray it comes out easily with no complications.

God bless you all for remembering our baby in your prayers.

10:00pm update: We went to see her three times today. We need to catch her while she's already awake, but she sleeps so much. You have to just catch her at the right time because she really needs her rest to get stronger. It was nice being able to see her while she was awake a couple of times. It's comforting to us to be able to provide comfort during/after something painful or bothersome. But what's best is that we also got to visit with her for a long time while she was calmly awake, and sneak in some kisses while we got the chance without waking her up. :)

1 Comment

Thu, May 01, 2014

5/1/2014

1 Comment

 
She still hasn't been able to go on the CPAP but this has worked out quite well. She needed a couple procedures today that require her being intubated. 1. The Broviac is going to be taken out. It would not allow blood draws so she had to get poked all the time for labs. Very sad. Poor baby. A line was placed in her arm, sucessfully!, so now she doesn't have to get poked. It seems it wasn't possible/safe to do sooner. 2. She needs a small procedure to remove fluid that got stuck in a pocket on the top of the right lung.
Being reintubated would have been quite miserable for her so we're totally okay with the fact she's not on CPAP today. We'll be able to hold her when the time is right.
The team is still working on a diagnosis. A CT scan shows sign of some lung disease but it's going to require other tests to find out what it is.
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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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