Inspired By Gisele
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3/30 Update: Surgery Scheduled. Update by Tiffany's Mom

3/30/2014

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Some of you may already know this, but for those who don't, the doctors have scheduled Gisele's surgery for this coming Tuesday at 10:30am to stop the excessive fluid accumulation from around her lungs. Please pray that the Lord will strengthen her body for the surgery, that she won't experience any setbacks, that the doctors will work with precision and be given wisdom to know exactly what they need to do to care for her. Please keep Ron and Tiffany in prayer as well during the surgery, that they will be filled with the peace of the Holy Spirit and be given strength. Thank you all of you prayer warriors. Your prayers are so appreciated and believe me, they really are felt.

- Sameh and Louise

I'll attest to the fact those prayers are felt. Sometimes the day is especially challenging and I feel this peace despite the situation.

Gisele seems to be feeling pretty good the past couple of days, despite still having Chylothorax and needing surgery. She's been calm when she's awake. Just looking around and not upset. If she gets upset she's consolable without medicine much more often than before. Her little nails started growing fast these past few days. I'm excited about it because it's known that nails can stop growing when you're critically ill. The body will focus on the more serious challenges and neglect things like nails. Considering this, it's a good sign that on some internal level she is doing better. I feel she is more able to handle surgery than she was a few days ago.

- Tiffany
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Good MRI results & a special prayer request for little Ethan

3/26/2014

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The MRI showed that the major clot in her brain has cleared significantly! What exciting news. She's been doing about the same otherwise. We're told one more week before surgery for her chylothorax (lung drainage) is considered. Please pray that it clears up, but if that's not what God has planned then pray for us and the doctors to make the right decisions about surgery or waiting longer.

Little Ethan is 6 months old. He was born with a cleft palate which caused the development of various internal problems. His family has been dealing with issues non-stop since he was born. He has been having nerve related problems that cause seizures and other issues. He must have surgery for this, but it's very invasive. Please pray for him. Pray for him to be healed, for the medical team involved to do an excellent job, and not least of all for his family. I will refer to them as Mom and Dad. Please pray for their encouragement and that God would please speak to mom and dad about this, and also for his big brother Damian, who is very young but can sense it and gets stressed by everything going on.

His mom will be checking the blog. Please post a comment to let her know you're placing her baby and their family in God's loving hands. Thanks everyone for your prayers.

-Tiffany

Verses and a note for Mom:
Romans 15:13
"May the God of hope fill you will all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit."
Mom, I personally found Isaiah 40 very comforting because it made me think about how incredibly able God is and reminded me that He's in charge of the people in charge of my baby, so I don't have to be afraid. Please read it. We're praying for you! :)

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Encouragements

3/25/2014

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Gisele is doing about the same overall. She has an MRI scheduled for tomorrow so we can see any improvements. Results sometimes take a while to get so we might not be able to update everyone until the following day.

Respiratory wise, she's doing about the same. She's still having the occassional spell of respiratory distress, where she needs some intervention to get back on track. Often it's caused by simply crying. When she starts crying, her throat clamps down on the tube and keeps her from getting enough air. She needs to be kept calm, preferrably without medicine given just to calm her. Her nurses have been great with comforting her, and helping me understand how to comfort her too. Tonight, Jessica E. was really helpful and encouraging to me with swaddling Gisele. Until tonight, I would try swaddling her for a couple minutes, but I believed that after two minutes of it not working I was just bothering her more than anything. I would run away (poor Gisele) and go sit down. Jessica told me to be persistent. And wouldn't you know? It worked. Seeing Gisele finally settle down made me feel more like a mom. It made me so content being able to help my baby. It was very sweet.

As I was leaving, another of her nurses, Angela, stopped me. She told me that her church included Gisele in their printed prayer requests. She was excited and amazed about it, and so was I just hearing about it. I was so touched by this I started to get choked up. She said, "Stop it, you're going to make me cry." As she got choked up she turned to walk away and I said, "Me too!" We laughed and parted ways, still teary eyed. It's so encouraging to know so many people are asking God to help Gisele.


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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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