Grab a cup of coffee. This is a long post! I promise a shorter post next time. :)
When your baby is in the NICU for a long time, you learn that things can be like a rollercoaster with the day-to-day status of different issues. The status of a certain thing can go up and down, but you have to look at the general picture over time or you'll have a very hard time dealing with the dips. This is not totally surprising to me because God was so kind as to warn me about this a long time before she was born. I never researched what being in the NICU would be like. I was already prepared for that rollercoaster because God let me know it would be a tough road. I know the only way I can handle this all is by asking God for his help with every challenge I face. I hope as I continue to provide updates, that everyone reading will keep these things in mind and not get discouraged. I find my strength in God. I'm so thankful that Jesus came and died on the cross so that it's possible for me to receive His forgiveness and have a right standing with God, so that I can pray to Him, and receive everything I need for my soul during this difficult time (comfort, encouragement, strength, you name it!). Every day I can't help but be so grateful for Jesus making it possible for me to have a relationship as such with God. He's always reminding me every day that He's in control, and caring for Gisele and for our family, and it's very comforting. People say "God will not give you more than you can handle". I think what's more accurate is that He will give you more than you can handle. One reason is that you'll quickly realize you need His help to be able to handle the situation. God wants us to draw near to Him and He wants us to know He's got things handled. As I receive strength and peace that surpasses understanding I know it's not of my own ability. Having a child in critical condition makes you quickly realize you can't gloat about being strong of your own right. You need someone stronger to hold you up.
Isaiah 41:10, 13 Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.’ ... For I, the LORD your God, will hold your right hand, Saying to you, ‘Fear not, I will help you.’
So here goes bringing everyone up to date. Gisele is usually not in pain unless they've had to do a procedure. She sleeps a lot but sometimes not so easily. Not until almost two weeks ago was she off heavy pain meds. Since then she has periods of being awake. After that it took time for me to get to know her, and now I've learned how to comfort her and help her sleep. Gisele has had a rough couple of days. Her chylothorax (fluid around the lungs) is challenging to manage, but CHOC does a great job. They're trying to manage some backed up fluid today that's not draining (and I'm sitting here, not allowed in the NICU for sterile reasons...the only reason they could kick me out and you're seeing an update! lol.) She had a procedure to add a "PIC line" yesterday but it was unsuccessful because her veins are too tiny as a result of the tumor restricting her movements in utero. So she was in some pain and she received pain meds for that. Today she had an issue with breathing because of lung fluid building up, so they're trying to make the tube allow outflow again so her lung can fully expand again. The surgeon said the chylothorax could take weeks or months to clear up. She's on medication now. It doesn't work for every case but it's the only one for chylothorax. Her reduced output could be a response to the drug, or just because that left tube isn't allowing draining. We'll see in the next 24 hours. If it doesn't work, it just depends on how long her body takes to repair the problem. We're hopeful for a quick recovery, but not holding our breath.
On a more pleasant note: Dr. Gunner (her surgeon) found that her Broviac is now allowing blood draws so she doesn't have to get poked every day for labs. It's painful for her getting all those pokes. Watching her get poked so much was so awful, this is so much better! Yeah Dr. Gunner!!!
Some things to clarify: The neurologists said that she behaves appropriately for her age, despite seeing some very concerning things on the MRI. They said they're more focused on how she behaves and moves over the images, though they are of concern. So, the major vein that drains blood from the brain, that all other veins drain into, has a very large clot running from top to bottom at the back of her head. They're giving her an anti-clotting protein to break it up. She has two "stroke" areas in the brain that may affect mobility (therapy can often train other areas of the brain to perform the job of the damaged portions) Her brain status is questionable and will have to be watched for years to come. We'll know as she gets older, whether or not she's hitting those developmental milestones. Then we will do therapy if any problem arises. The most important thing is that nothing is manifesting at this time. There are some kids that survive things like this unscathed.
What God recently shared with me
When Peter was walking out with faith in Jesus, he did the impossible by walking on water. When he got his eyes on the problem (the huge waves) he began to sink. Then Jesus pointed out his lack of faith as the reason. God reminded me that as things happen with Gisele to focus on Him and who He is and His abilities. If I do that, I don't worry. I'm actually quite happy as I can be, knowing that Mighty God of the Universe is in charge here. It's such a wonderful assurance. :)
Jesus Walks on the Sea, Matthew 14:24-31
But the boat was now in the middle of the sea, tossed by the waves, for the wind was contrary. ... Jesus went to them, walking on the sea. 26 And when the disciples saw Him walking on the sea, they were troubled, saying, “It is a ghost!” And they cried out for fear.But immediately Jesus spoke to them, saying, “Be of good cheer! It is I; do not be afraid.”And Peter answered Him and said, “Lord, if it is You, command me to come to You on the water.”So He said, “Come.” And when Peter had come down out of the boat, he walked on the water to go to Jesus. But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!”And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?”
When your baby is in the NICU for a long time, you learn that things can be like a rollercoaster with the day-to-day status of different issues. The status of a certain thing can go up and down, but you have to look at the general picture over time or you'll have a very hard time dealing with the dips. This is not totally surprising to me because God was so kind as to warn me about this a long time before she was born. I never researched what being in the NICU would be like. I was already prepared for that rollercoaster because God let me know it would be a tough road. I know the only way I can handle this all is by asking God for his help with every challenge I face. I hope as I continue to provide updates, that everyone reading will keep these things in mind and not get discouraged. I find my strength in God. I'm so thankful that Jesus came and died on the cross so that it's possible for me to receive His forgiveness and have a right standing with God, so that I can pray to Him, and receive everything I need for my soul during this difficult time (comfort, encouragement, strength, you name it!). Every day I can't help but be so grateful for Jesus making it possible for me to have a relationship as such with God. He's always reminding me every day that He's in control, and caring for Gisele and for our family, and it's very comforting. People say "God will not give you more than you can handle". I think what's more accurate is that He will give you more than you can handle. One reason is that you'll quickly realize you need His help to be able to handle the situation. God wants us to draw near to Him and He wants us to know He's got things handled. As I receive strength and peace that surpasses understanding I know it's not of my own ability. Having a child in critical condition makes you quickly realize you can't gloat about being strong of your own right. You need someone stronger to hold you up.
Isaiah 41:10, 13 Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.’ ... For I, the LORD your God, will hold your right hand, Saying to you, ‘Fear not, I will help you.’
So here goes bringing everyone up to date. Gisele is usually not in pain unless they've had to do a procedure. She sleeps a lot but sometimes not so easily. Not until almost two weeks ago was she off heavy pain meds. Since then she has periods of being awake. After that it took time for me to get to know her, and now I've learned how to comfort her and help her sleep. Gisele has had a rough couple of days. Her chylothorax (fluid around the lungs) is challenging to manage, but CHOC does a great job. They're trying to manage some backed up fluid today that's not draining (and I'm sitting here, not allowed in the NICU for sterile reasons...the only reason they could kick me out and you're seeing an update! lol.) She had a procedure to add a "PIC line" yesterday but it was unsuccessful because her veins are too tiny as a result of the tumor restricting her movements in utero. So she was in some pain and she received pain meds for that. Today she had an issue with breathing because of lung fluid building up, so they're trying to make the tube allow outflow again so her lung can fully expand again. The surgeon said the chylothorax could take weeks or months to clear up. She's on medication now. It doesn't work for every case but it's the only one for chylothorax. Her reduced output could be a response to the drug, or just because that left tube isn't allowing draining. We'll see in the next 24 hours. If it doesn't work, it just depends on how long her body takes to repair the problem. We're hopeful for a quick recovery, but not holding our breath.
On a more pleasant note: Dr. Gunner (her surgeon) found that her Broviac is now allowing blood draws so she doesn't have to get poked every day for labs. It's painful for her getting all those pokes. Watching her get poked so much was so awful, this is so much better! Yeah Dr. Gunner!!!
Some things to clarify: The neurologists said that she behaves appropriately for her age, despite seeing some very concerning things on the MRI. They said they're more focused on how she behaves and moves over the images, though they are of concern. So, the major vein that drains blood from the brain, that all other veins drain into, has a very large clot running from top to bottom at the back of her head. They're giving her an anti-clotting protein to break it up. She has two "stroke" areas in the brain that may affect mobility (therapy can often train other areas of the brain to perform the job of the damaged portions) Her brain status is questionable and will have to be watched for years to come. We'll know as she gets older, whether or not she's hitting those developmental milestones. Then we will do therapy if any problem arises. The most important thing is that nothing is manifesting at this time. There are some kids that survive things like this unscathed.
What God recently shared with me
When Peter was walking out with faith in Jesus, he did the impossible by walking on water. When he got his eyes on the problem (the huge waves) he began to sink. Then Jesus pointed out his lack of faith as the reason. God reminded me that as things happen with Gisele to focus on Him and who He is and His abilities. If I do that, I don't worry. I'm actually quite happy as I can be, knowing that Mighty God of the Universe is in charge here. It's such a wonderful assurance. :)
Jesus Walks on the Sea, Matthew 14:24-31
But the boat was now in the middle of the sea, tossed by the waves, for the wind was contrary. ... Jesus went to them, walking on the sea. 26 And when the disciples saw Him walking on the sea, they were troubled, saying, “It is a ghost!” And they cried out for fear.But immediately Jesus spoke to them, saying, “Be of good cheer! It is I; do not be afraid.”And Peter answered Him and said, “Lord, if it is You, command me to come to You on the water.”So He said, “Come.” And when Peter had come down out of the boat, he walked on the water to go to Jesus. But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!”And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?”
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