Monday, December 6, 2010
There have been no real big changes in Noah's care these past few days, except they have taken away the scheduled Atavan (sedation drug) and boosted his methadone and clonodine. He is going through some fierce withdrawals... poor buddy :(
Today, he received yet ANOTHER ultrasound on his liver and pancreas. His liver enzymes have gone up again. Still trying to figure out what is contributing to these elevated numbers. The previous ultrasound from 2 days ago, they just HAPPENED to discover a blood clot in his IVC (inferior vena cava... caries de-oxygenated blood from his lower body to the right atrium). We are praising God for this discovery, as they were not purposely looking for this. So his heparin drip has gone up to prevent the clot from getting any bigger.
Foot splits are still in use... it's going to take a while before his legs and feet muscles are loose again.
Yesterday, Noah had begun to focus a little and start tracking movement! He is doing great with left to right eye movements, but has yet to move them up and down.. SOON though!
Withdrawals are the pits! Have I mentioned that yet?!???! Poor Noah... It is one thing to hear your baby cry and watch them squirm, but to NOT hear them cry intensifies the visual experience... you can see ALL their pain and discomfort in their eyes and body. I just wish I could hear him... gotta get that breathing tube out first though!
I was passed a message from someone I do not know but they are constantly praying for Noah and sharing our story with others, and was told, "Stand in Faith, and when all else fails....... Stand some more! You never know when your miracle is going to come!" So... I am going to KEEP on praying for that miracle! And ONE of those miracle I would LOVE to receive for Christmas is for Noah to give me at least ONE smile for Christmas! Sure, I would LOVE to have him whole and healed and all that jazz, but I would be more than happy and content with just one smile... I have not seen his breath taking, contagious, gorgeous, silly, heart melting, soul warming, smile for 32 days! Please, God, I would LOVE to receive ONE!!!
Today, he received yet ANOTHER ultrasound on his liver and pancreas. His liver enzymes have gone up again. Still trying to figure out what is contributing to these elevated numbers. The previous ultrasound from 2 days ago, they just HAPPENED to discover a blood clot in his IVC (inferior vena cava... caries de-oxygenated blood from his lower body to the right atrium). We are praising God for this discovery, as they were not purposely looking for this. So his heparin drip has gone up to prevent the clot from getting any bigger.
Foot splits are still in use... it's going to take a while before his legs and feet muscles are loose again.
Yesterday, Noah had begun to focus a little and start tracking movement! He is doing great with left to right eye movements, but has yet to move them up and down.. SOON though!
Withdrawals are the pits! Have I mentioned that yet?!???! Poor Noah... It is one thing to hear your baby cry and watch them squirm, but to NOT hear them cry intensifies the visual experience... you can see ALL their pain and discomfort in their eyes and body. I just wish I could hear him... gotta get that breathing tube out first though!
I was passed a message from someone I do not know but they are constantly praying for Noah and sharing our story with others, and was told, "Stand in Faith, and when all else fails....... Stand some more! You never know when your miracle is going to come!" So... I am going to KEEP on praying for that miracle! And ONE of those miracle I would LOVE to receive for Christmas is for Noah to give me at least ONE smile for Christmas! Sure, I would LOVE to have him whole and healed and all that jazz, but I would be more than happy and content with just one smile... I have not seen his breath taking, contagious, gorgeous, silly, heart melting, soul warming, smile for 32 days! Please, God, I would LOVE to receive ONE!!!
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About Me
- Pray For Baby Noah
- Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...
Click on a link below to learn more.
Double Outlet Right Ventricle Tracheoesophageal Fistula Scimitar Syndrome Dextrocardia
He is getting so BIG!!!!
Getting a short break from his O2 :)
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My handsome men!
Me and my boy :)
Dec. 6, 2010
I got to hold Noah!!
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2 comments:
Aaron, my prayers are with you and your family!! I know God has a path for Noah that we do not understand, we just have to trust in his love.
Thinking of Noah always,
Christine (Price Change)
now, when he's older you remind him of the horrible struggle he had to endure to get off the meds. Use this for drug prevention as a teen. God is building his testimony day by day. Sorry its so excruciating right now!
Love ya! We need to go out again!