We talked with the cardiologist around 1130. They did another echo on him to look specifically at his aorta. They found that his aorta has a kink in it. It is like a dent or narrowing just before the arch in his aorta. They also diagnosed his aortic valve as small and unicuspid meaning it has just one flap. A normal one has three flaps. This is the cause of the high blood pressure in his left ventricle. Due to the lack of blood flow through the valve the aorta didnt develop to the proper diameter, and is narrowed as well as dented. They saw two small holes in his heart, a PFO and one between his left and right ventricle. They are both fairly common anomalies (1 in 5 adults has a PFO) and they are not concerned about either of those. The also looked at his mitral valve and found that it looks great.
What next: Well there has yet to be a recommendation, but they are considering two options. Unfortunately both require open heart surgery and will probably require him to be put on bypass. Also, with either option he will likely need surgery again in the future.
1) They will focus on repairing the dent in his aorta. They will take an artery from his arm to replace the narrow and dented portion of his aorta. Taking an artery from his arm will not cause any issues with circulation. His arm will be perfectly fine. While they have the aortic valve exposed they will try to dilate the valve. This is not a permanent fix of the valve, just one that will buy time to allow something more permanent to be done in the future. He would remain in the hospital for at least 5 days after the surgery.
2) The Ross procedure - In the ross procedure they will use Cadens pulmonary valve (the pulmonary artery takes blood from the heart to the lungs to be oxygenated) and use it to replace is aortic valve. They will remove the diseased aortic valve completely. The pulmonary artery will be sewn back to the heart with no valve. Caden would require a second surgery to add a pulmonary valve at some point in his life. The doctor told us many people with the ross procedure are healthy and normal without any limitations up to their teens without the pulmonary valve.
Here is a quick pictoral description of the procedure: http://www.cts.usc.edu/
In the first picture you will notice there is a little vein between the aorta and pulmonary arteries. That is called the PDA. It normally closes off a couple days after birth but they have him on meds to keep it open. It is helping provide blood flow to the aorta for his lower extremities.
We are told to prepare for a 2-4 week hospital stay depending on which operation they choose and how successful the surgery is.
We are encouraged! There are options, he has a healthy heart just a pesky valve, he is stable, strong, and like his daddy is already, as the kids would say, "messing with people" by fighting and peeing on the doctors (a payback for all the poking an prodding im sure). This morning in the waiting room a couple came up to us and encouraged us with the story of their 3 year old son who is 5 days younger than Jayci. Their son Elijah birth story is incredibly similar to Cadens, no predelivery diagnosis, in the room with them for about an hour, taken to the NICU, then transported to CHoA the same day. We exchanged contact info and know that as a community we are stronger than we are on our own. Please pray for Elijah who had his third and final open heart surgery yesterday.
We are staying away from google searches related to Cadens condition and trusting completely in the Lord and Cadens doctors. We have been contacted by 4 nurses that work at CHoA that we either know personally or are friends of family that have told us they will keep an eye on him and pray over him when they are there. Better yet one of our close family friends is assigned to be Cadens nurse today. This is no coincidence. God is good and loves us and Caden. It's tough to say that right know but I know in my heart and believe it is so true. We are laughing a little, crying a lot, and clinging to each other and your prayers and encouragement. I am reduced to tears hourly by everyones encouragement, prayers, love for us, and for our child that you have never met. We are completely overwhelmed by God's goodness in providing you, our incredible community to surround us and cover us.
Becca will be discharged today and I will head back to the CHoA soonish to talk with the social worker about insurance and other crap like that.
We love you all and know with out doubt that Caden is in the great hands of his Creator, and the doctors at CHoA.
-Be praying for the surgeons who are going to make the recommendation on which procedure they believe will be best.
-Pray for us in making the decision on the surgery
-Pray that we will bond with our son and not let ourselves put up walls because we are too afraid to lose him
-Pray for Caden, his heart to remain strong and the PGA to remain open, that he knows and feels our love in the short time we get to visit with him, that while we cant hold him our touch would be sufficient, that he would come to know his Creator intimately
-Pray for Jayci -we miss her too and want her to transition to our new "normal" well, for her to comprehend well that brother is sick and the doctors are taking good care of him, for her to know that she is loved by us though we are not with her as much and cry, that we still love her so much.
- Pray for Becca - to heal from the delivery, to rest, even though she is desperate to nurse him and hold him and have the skin to skin contact that holding his hand will be sufficient for now, for her not to let her thoughts go to bad places, for her to bond with her son without fear of hurt or loss, to completely trust in the Lord with Caden
- Pray for me - to allow myself to be ok with not fixing things, to share my emotions with Becca and not try to be strong all the time, that holding his hand will suffice for the snuggling i long for, for my thoughts not to go to bad places, for me to bond with my son without fear of hurt or loss, to completely trust in the Lord with Caden
What can you do for us?
Pray. Trust the Lord will heal Caden.
We will let you know if we have any need and keep you updated as you join us in yet another journey.
I am so grateful for you guys! I can't thank you enough for just being there.
Love you all,
Adam
What next: Well there has yet to be a recommendation, but they are considering two options. Unfortunately both require open heart surgery and will probably require him to be put on bypass. Also, with either option he will likely need surgery again in the future.
1) They will focus on repairing the dent in his aorta. They will take an artery from his arm to replace the narrow and dented portion of his aorta. Taking an artery from his arm will not cause any issues with circulation. His arm will be perfectly fine. While they have the aortic valve exposed they will try to dilate the valve. This is not a permanent fix of the valve, just one that will buy time to allow something more permanent to be done in the future. He would remain in the hospital for at least 5 days after the surgery.
2) The Ross procedure - In the ross procedure they will use Cadens pulmonary valve (the pulmonary artery takes blood from the heart to the lungs to be oxygenated) and use it to replace is aortic valve. They will remove the diseased aortic valve completely. The pulmonary artery will be sewn back to the heart with no valve. Caden would require a second surgery to add a pulmonary valve at some point in his life. The doctor told us many people with the ross procedure are healthy and normal without any limitations up to their teens without the pulmonary valve.
Here is a quick pictoral description of the procedure: http://www.cts.usc.edu/
In the first picture you will notice there is a little vein between the aorta and pulmonary arteries. That is called the PDA. It normally closes off a couple days after birth but they have him on meds to keep it open. It is helping provide blood flow to the aorta for his lower extremities.
We are told to prepare for a 2-4 week hospital stay depending on which operation they choose and how successful the surgery is.
We are encouraged! There are options, he has a healthy heart just a pesky valve, he is stable, strong, and like his daddy is already, as the kids would say, "messing with people" by fighting and peeing on the doctors (a payback for all the poking an prodding im sure). This morning in the waiting room a couple came up to us and encouraged us with the story of their 3 year old son who is 5 days younger than Jayci. Their son Elijah birth story is incredibly similar to Cadens, no predelivery diagnosis, in the room with them for about an hour, taken to the NICU, then transported to CHoA the same day. We exchanged contact info and know that as a community we are stronger than we are on our own. Please pray for Elijah who had his third and final open heart surgery yesterday.
We are staying away from google searches related to Cadens condition and trusting completely in the Lord and Cadens doctors. We have been contacted by 4 nurses that work at CHoA that we either know personally or are friends of family that have told us they will keep an eye on him and pray over him when they are there. Better yet one of our close family friends is assigned to be Cadens nurse today. This is no coincidence. God is good and loves us and Caden. It's tough to say that right know but I know in my heart and believe it is so true. We are laughing a little, crying a lot, and clinging to each other and your prayers and encouragement. I am reduced to tears hourly by everyones encouragement, prayers, love for us, and for our child that you have never met. We are completely overwhelmed by God's goodness in providing you, our incredible community to surround us and cover us.
Becca will be discharged today and I will head back to the CHoA soonish to talk with the social worker about insurance and other crap like that.
We love you all and know with out doubt that Caden is in the great hands of his Creator, and the doctors at CHoA.
-Be praying for the surgeons who are going to make the recommendation on which procedure they believe will be best.
-Pray for us in making the decision on the surgery
-Pray that we will bond with our son and not let ourselves put up walls because we are too afraid to lose him
-Pray for Caden, his heart to remain strong and the PGA to remain open, that he knows and feels our love in the short time we get to visit with him, that while we cant hold him our touch would be sufficient, that he would come to know his Creator intimately
-Pray for Jayci -we miss her too and want her to transition to our new "normal" well, for her to comprehend well that brother is sick and the doctors are taking good care of him, for her to know that she is loved by us though we are not with her as much and cry, that we still love her so much.
- Pray for Becca - to heal from the delivery, to rest, even though she is desperate to nurse him and hold him and have the skin to skin contact that holding his hand will be sufficient for now, for her not to let her thoughts go to bad places, for her to bond with her son without fear of hurt or loss, to completely trust in the Lord with Caden
- Pray for me - to allow myself to be ok with not fixing things, to share my emotions with Becca and not try to be strong all the time, that holding his hand will suffice for the snuggling i long for, for my thoughts not to go to bad places, for me to bond with my son without fear of hurt or loss, to completely trust in the Lord with Caden
What can you do for us?
Pray. Trust the Lord will heal Caden.
We will let you know if we have any need and keep you updated as you join us in yet another journey.
I am so grateful for you guys! I can't thank you enough for just being there.
Love you all,
Adam