It's really hard to believe that Caden has already been alive for 9 days. On the other hand, it's hard to believe it's only been 9 days. Actually, I dont even know if 9 days is right because I'm too exhausted to pull up the calendar and check. He continues to amaze us every day with his little fighting spirit and the miracle that he is in our lives.
We are about to go back to the hospital, so I only have a minute, but I wanted to pop in with a quick update on his progress, as well as some updated prayer requests.
The big news right now is that they were able to close Caden's chest! This is a HUGE praise and we are so glad not to be able to see his little heart beating anymore, because that means he is that much closer to being back in our arms.
After the chest closure yesterday afternoon, the doctor upped his epinephrine and a few of the other drugs (closing the chest put added pressure on the heart) and they also paralyzed him again so he could rest through the night. They turned off the paralytic this morning and he was just starting to open his eyes and move around a little bit when we left this afternoon. His goals for the next few days are to wean him off the ventilator so he is breathing on his own, and to start getting him off more of the medications. I think I've mentioned before that his body needs to adjust to his "new plumbing" because his heart has been working one way for the past 9 months of his life, and now it has to learn to do everything differently.
Continue to pray that his left ventricle will heal and "fix itself" so he doesnt need additional surgery. Pray that his blood pressure stays where it needs to be, and that he doesn't go back into JET rhythm. Pray that they can successfully wean him off medications and that his body can tolerate all the changes well. Pray that he is able to be weaned off the ventilator. Pray for peace and no pain for him and that he will know how LOVED he is by us, by y'all, and by his heavenly Father.
The last few days, Jayci has been extra clingy and sad and insecure. We'd love for y'all to be praying for her, and for wisdom for us in taking care of her and giving her grace and boundaries during this difficult time. For me, this is one of the hardest parts of the whole process - I'm just not sure how to be a good mom to both Caden and Jayci, especially when I'm exhausted emotionally and physically.
Adam and I are holding up ok. We are both tired (well that's an understatement really), but the Lord has really used Caden and his little heart to knit Adam and my hearts even more closely together. I am so thankful for him and to be doing this with him. Pray for both of us for rest and peace. I think sometimes when things seem less desperate, it's easy to become less dependent on the Lord, and that's when I start falling apart. Because there's no way I'm strong enough to handle all this on my own.
Thank you again so so much for your prayers and encouragement and for the notes y'all have sent Caden. We read them to him every night and it encourages us immensely to know just how many people are surrounding us and loving on us.
The one thing I wish I could just ignore in the midst of all this is money. It's the last thing I want to worry about, seriously (ask Adam, I get all grouchy when he tries to tell me we need to talk about it and figure out what we're going to do). But I wanted to just clarify quickly a few things because I've been getting lots of questions. We posted this note from the board of directors of our non-profit. Many of y'all have been asking if 100% of the money donated to Blueprint 58 goes to us. Well, Adam and I live on 100% support. Meaning if we don't have money in our Blueprint 58 account (which we are dangerously close to right now), then we don't get a paycheck. If we don't have a paycheck, we cant pay our bills - especially right now when we're starting to get medical bills in the mail. I don't know if that helps clarify at all. The post explains how to give to Blueprint 58, but we will also hopefully have a paypal account set up soon so you can give online.
We are about to go back to the hospital, so I only have a minute, but I wanted to pop in with a quick update on his progress, as well as some updated prayer requests.
The big news right now is that they were able to close Caden's chest! This is a HUGE praise and we are so glad not to be able to see his little heart beating anymore, because that means he is that much closer to being back in our arms.
After the chest closure yesterday afternoon, the doctor upped his epinephrine and a few of the other drugs (closing the chest put added pressure on the heart) and they also paralyzed him again so he could rest through the night. They turned off the paralytic this morning and he was just starting to open his eyes and move around a little bit when we left this afternoon. His goals for the next few days are to wean him off the ventilator so he is breathing on his own, and to start getting him off more of the medications. I think I've mentioned before that his body needs to adjust to his "new plumbing" because his heart has been working one way for the past 9 months of his life, and now it has to learn to do everything differently.
The last few days, Jayci has been extra clingy and sad and insecure. We'd love for y'all to be praying for her, and for wisdom for us in taking care of her and giving her grace and boundaries during this difficult time. For me, this is one of the hardest parts of the whole process - I'm just not sure how to be a good mom to both Caden and Jayci, especially when I'm exhausted emotionally and physically.
Adam and I are holding up ok. We are both tired (well that's an understatement really), but the Lord has really used Caden and his little heart to knit Adam and my hearts even more closely together. I am so thankful for him and to be doing this with him. Pray for both of us for rest and peace. I think sometimes when things seem less desperate, it's easy to become less dependent on the Lord, and that's when I start falling apart. Because there's no way I'm strong enough to handle all this on my own.
Thank you again so so much for your prayers and encouragement and for the notes y'all have sent Caden. We read them to him every night and it encourages us immensely to know just how many people are surrounding us and loving on us.
The one thing I wish I could just ignore in the midst of all this is money. It's the last thing I want to worry about, seriously (ask Adam, I get all grouchy when he tries to tell me we need to talk about it and figure out what we're going to do). But I wanted to just clarify quickly a few things because I've been getting lots of questions. We posted this note from the board of directors of our non-profit. Many of y'all have been asking if 100% of the money donated to Blueprint 58 goes to us. Well, Adam and I live on 100% support. Meaning if we don't have money in our Blueprint 58 account (which we are dangerously close to right now), then we don't get a paycheck. If we don't have a paycheck, we cant pay our bills - especially right now when we're starting to get medical bills in the mail. I don't know if that helps clarify at all. The post explains how to give to Blueprint 58, but we will also hopefully have a paypal account set up soon so you can give online.