We just left the hospital where we sat in on morning rounds and talked to the doctors. We have some time before they finish up rounds and we can go back and see Caden, so we slipped away to grab some breakfast and process.
The good news is that Caden is back in a sinus (normal) heart rhythm, thank you all so much for praying for that specifically. His blood pressure is a little low, but the doctors said that is probably the result of the sedative they had to give him because he was moving around too much. They want him to move around a little because it will help with drainage, but the doctor said "he's an active little guy" and was moving too much so they had to give him the sedative. His swelling went back up, probably because he was in JET rhythm for so long and didn't tolerate it well. So they have put him on diuretics to help him get rid of the fluid in his tissue so they can close his chest (so pray that he will pee so that the swelling goes down and they can close up his chest). They weaned his ventilator a little bit more today, he's breathing on his own quite a bit now. Today is mostly a day for him to rest and recover from being in JET rhythm for so long. We need everything to stabilize, and blood pressure to go up.
He also had an echo again this morning and they said the mitral valve is a little leaky and in surgery they noticed abnormal tissue around the mitral valve. That's another thing that time will have to tell what needs to be done. It could fix itself or it could need further intervention. We felt a little blindsided by this one because we thought the mitral valve was completely normal, and I just want my poor little man to have something go right for him. It's so hard when it feels like it's one thing after another after another for him. We just need y'all to pray for his heart that God would heal it, especially the mitral valve and left ventricle.
This journey feels like we take one step forward and one step back and it's been difficult for us to be excited about any gains because we're so concerned about the losses. Looking ahead all I can see right now is a long dark road, and it's terrifying. I know the only way to get through is to step forward and walk THROUGH the darkness and remember that God says that "even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you" (psalm 139). But that's a little easier said than done.
There's something called "floundering" where you hunt flounder at night using a lantern and a spear, and you wade through knee deep water in the darkness. The lantern produces enough light for you to see about three feet in front of you and to the bottom of the water. When you look too far ahead, all you can see is darkness and you lose track of where you are, and you certainly wont catch any flounder. But when you stay focused and keep looking just at the three feet ahead of you, you dont notice the darkness (Adam said someone emailed or messaged this to us, but we can't find it anywhere now - so thank you if you're the one who sent it to us!) This is such a picture of where we are right now.
Please continue to pray for us, we're both feeling a little numb and everything seems surreal. It's like trying to live two lives, one at home with Jayci and one at the hospital with Caden. And it's emotionally and physically exhausting, and we're about cried out right now. So pray for strength and for the Lord to continue to carry us through it step by step, because that is the only way we're making it.
And pray for Caden, for rest and recovery. And for miracles. We are so thankful for the miracles we have already seen in and through Caden. He is an amazing testimony to the Lord's goodness and I am amazed at the way he has touched the lives of more people in his week of life than I have in 26 years.
The board of our non-profit put together a letter with ways y'all can help and support us, I think they will post it on here later today. We cannot thank you enough for the way we can feel you holding us up and cheering us on.
We made Caden a CD to play by his bed, and last night accidentally put it on repeat of track one - it took it playing about 4 times before we realized what was going on and fixed it. But I told Adam this morning I was glad that it got stuck on that song because the words were "you are safe in the arms of the Father." That has been playing through my head ever since - our sweet baby truly is safe in the arms of our Father. And as much as I wish that he was in our arms, I am glad I know the One who is holding Him, and I'm glad that He is holding Adam and I too.
God is good.
The good news is that Caden is back in a sinus (normal) heart rhythm, thank you all so much for praying for that specifically. His blood pressure is a little low, but the doctors said that is probably the result of the sedative they had to give him because he was moving around too much. They want him to move around a little because it will help with drainage, but the doctor said "he's an active little guy" and was moving too much so they had to give him the sedative. His swelling went back up, probably because he was in JET rhythm for so long and didn't tolerate it well. So they have put him on diuretics to help him get rid of the fluid in his tissue so they can close his chest (so pray that he will pee so that the swelling goes down and they can close up his chest). They weaned his ventilator a little bit more today, he's breathing on his own quite a bit now. Today is mostly a day for him to rest and recover from being in JET rhythm for so long. We need everything to stabilize, and blood pressure to go up.
He also had an echo again this morning and they said the mitral valve is a little leaky and in surgery they noticed abnormal tissue around the mitral valve. That's another thing that time will have to tell what needs to be done. It could fix itself or it could need further intervention. We felt a little blindsided by this one because we thought the mitral valve was completely normal, and I just want my poor little man to have something go right for him. It's so hard when it feels like it's one thing after another after another for him. We just need y'all to pray for his heart that God would heal it, especially the mitral valve and left ventricle.
This journey feels like we take one step forward and one step back and it's been difficult for us to be excited about any gains because we're so concerned about the losses. Looking ahead all I can see right now is a long dark road, and it's terrifying. I know the only way to get through is to step forward and walk THROUGH the darkness and remember that God says that "even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you" (psalm 139). But that's a little easier said than done.
There's something called "floundering" where you hunt flounder at night using a lantern and a spear, and you wade through knee deep water in the darkness. The lantern produces enough light for you to see about three feet in front of you and to the bottom of the water. When you look too far ahead, all you can see is darkness and you lose track of where you are, and you certainly wont catch any flounder. But when you stay focused and keep looking just at the three feet ahead of you, you dont notice the darkness (Adam said someone emailed or messaged this to us, but we can't find it anywhere now - so thank you if you're the one who sent it to us!) This is such a picture of where we are right now.
Please continue to pray for us, we're both feeling a little numb and everything seems surreal. It's like trying to live two lives, one at home with Jayci and one at the hospital with Caden. And it's emotionally and physically exhausting, and we're about cried out right now. So pray for strength and for the Lord to continue to carry us through it step by step, because that is the only way we're making it.
And pray for Caden, for rest and recovery. And for miracles. We are so thankful for the miracles we have already seen in and through Caden. He is an amazing testimony to the Lord's goodness and I am amazed at the way he has touched the lives of more people in his week of life than I have in 26 years.
The board of our non-profit put together a letter with ways y'all can help and support us, I think they will post it on here later today. We cannot thank you enough for the way we can feel you holding us up and cheering us on.
We made Caden a CD to play by his bed, and last night accidentally put it on repeat of track one - it took it playing about 4 times before we realized what was going on and fixed it. But I told Adam this morning I was glad that it got stuck on that song because the words were "you are safe in the arms of the Father." That has been playing through my head ever since - our sweet baby truly is safe in the arms of our Father. And as much as I wish that he was in our arms, I am glad I know the One who is holding Him, and I'm glad that He is holding Adam and I too.
God is good.