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God Is In Control

4/23/2014

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Picture
She's doing about the same today. Still has pneumonia and getting meds. She was awake without being in pain or distressed for a while so I got some enjoyable time where i could touch her. Yesterday was a tough day for her respiratory wise and they had to put her back on the oscilator. Today has been better. No matter what I know God is in control. She's in His loving hands at all times.
Today I got to talk with Gisele's surgeon, Dr. Guner, and one of our favorite nurses (yeah, that's you Jessica C!). We know he cares about her and is making sure he gives her the absolute best care because he's consulting with specialists about how to stop the Chylo. He suspects she may have some other underlying congenital problem with the lymphatics of the lungs. Everything happens for a reason, so the fact her last surgery was not successful doesn't change my belief. We really appreciate him and we trust him. We pray God will show him what he needs to do. God showed me a while ago that this is the person who should be caring for her so I have no doubts about what he decides.

Jessica is so sweet. We had a long talk about everything going on. It was good to talk. She  suggested taking pictures of me and Gisele and I'm so thankful she did! I love them. Gisele looks so sweet.

On another note, I just want to tell you guys what a great husband I have. He's always checking on me and he's really there for me. I just love him and I think he's great! :) 


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Today's Meeting

4/21/2014

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Today we met with the team of Dr.’s, surgeons, nurses in regards to Gisele’s outlook. Unfortunately the recent surgery to stop the chylo was unsuccessful so her chest continues to drain a large volume of fluid. This in itself is a huge problem for the baby. Keep in mind that when losing so much fluid she is also losing essential proteins, electrolytes, white cells and other immune properties and this keeps Gisele extremely sick. It leaves her with practically no immunity. Currently, she requires a lot of support.  The nurses and Dr.’s are trying to balance how much fluid Gisele loses with what needs to be replaced. If she loses too much fluid and gets dehydrated, her heart rate jumps up as her heart has to try to push what fluid she does have remaining around the body. Then they have to replace fluid back into her system, but that causes her to get edematous (her body swells up). Currently she is still very edematous from two things, the trauma of surgery and regular fluid replacement. She also has pneumonia in the right lung. It’s being treated but the lung is very wet so they have to give her a high amount of oxygen and frequently suction out the secretions. 
 
During the meeting we discussed the next step for Gisele. If she can fight off her current ailments and get to a more “critical-stable” condition then the Dr’s will consider another surgery to the left side of her chest (the recent surgery was on the right side). This will be a slightly different surgery than the one last week. In the end these surgeries serve the same purpose, to stop the chylothorax. The main point is that Gisele has to be in a strong enough condition to consider any further surgeries. She is very sick. The doctors would like to wait 4 to 6 weeks after she stabilizes to consider the next surgery.  

We also discussed the potential mental and physical problems that Gisele could have once she can go home. They do see some damage to the tissue in the brain but there’s no way to tell what affect this may or may not have at this time. 

Finally, and this was the toughest part, the Dr’s discussed what decisions we may need to make if the surgeries are not successful. Tiff and I pray that we never have to make that decision. We believe God can and will work miracles.

Tiffany: Remember, it’s a miracle they were able to get her back after she almost died during the tumor surgery on 2/13. Before she was born, God promised she’d be okay after a long bumpy road. Though this is looking very bad, we believe God will fulfill His promise and see her through. He told me the morning of her surgery that she’d almost die that day, but that she’d live, and that eventually she’d be okay. It made me trust God to get her through back then and he did. Now, we need to keep entrusting God to heal her, whether by surgery or miraculously, to fulfill that promise. 
 
Until our next update we ask for continued prayers and we thank you for your love and support.  
 
Ron and Tiffany

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Doing About The Same

4/17/2014

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She's doing about the same today. The labs they ran came  back positive for pneumonia, but it's already being treated. The drug she's been getting that i mentioned yesterday covers this bacteria. Very treatable.
She's still very swollen from surgery, which in and of itself is not harmful. It just means we're still waiting to see if the surgery worked.
We meet on Monday afternoon with the doctors. It'll be a multidisciplinary meeting that includes specialists. I'll post an update that night.
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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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