Sun, May 04, 2014

5/4/2014

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

Ryan Reyna link

5/7/2014 10:07:54 am

As I read your post, and see that you were able to get some kisses in, my eyes and heart fill with tears. As a father, one of my pride and joys is coming home from work and giving my boys kisses. It brings so much joy to me that you got to share this moment with Gisele.

And yet, I can't help but feel my heart break for this time you and your family are going through. For what it is worth, I'm sorry you and Gisele have to go through this.

Although at times I don't understand what is allowed in life, I know with all that I am that you are not alone. Gisele isn't alone. Jesus is right there with you guys, guiding every physician, orchestrating every mommy and me time.

Gisele - you are a warrior. You are a daughter of the King. You are beautifully and wonderfully and fearfully made. May the one who created you, God the Father, touch your body now, igniting healing and restoration.

Family - May the grace of our Lord be with you. Daily. Minute by minute, hour by hour. Know that our hearts break with yours, hurt with yours, question with yours, and trust with yours... That Jesus is true to His word.... MY GRACE IS SUFFICIENT FOR YOU!

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.

Sun, May 04, 2014

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