Thursday, August 4, 2011

Update from Adam on Caden

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/rossprocedure.html 

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

27 comments:

  1. Keeping you all lifted up in prayer!

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  2. we love you guys so much, and are gonna drive as fast as we can to atl tomorrow! this sounds like good news. adam, you are the perfect dad for caden--so scientifically minded, able to understand anatomy and also so sweet and compassionate. and becca, i am so proud of your strength. i can't wait to hug your neck. i am praying for caden constantly and WILL NOT STOP.

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  3. We are praying and praying and praying! I just know God has an incredible plan for that little man of yours.

    While it's nothing like what you're going through, we had the same separation, NICU, no nursing, no skin-to-skin contact thing for Weston's first few days too, and he was (and still is!) a champion little nurser. I know you guys can overcome this! Praying for healing!

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  4. Oh Becca and Adam. My heart hurts for y'all. But I know that you two as a couple have the strength to handle this. I will be praying. For Caden, for y'all, for Jayci and for his doctors. God is on your side and He is so, so good. Go love on that little boy. We'll be thinking of you...

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  5. Dear Adam,
    I am grateful for FB because this is how I learned that you had another baby... I am sending up all the positive thoughts and prayers you have requested.
    ~Joanne
    (from KMHS)

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  6. I can't imagine all you are going through right now. I am so sorry. We are crying, hurting, trusting, and praying with you!

    Much love,
    Matt an the rest of the Deuels

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  7. Adam and Becca,
    We are praying for both of you guys, know that. It sounds like you guys are in great hands and have some really good options. I can't imagine what you both are going through, but to keep it together enough not only to deal with the situation at hand, but to keep the Internetz updated is truly remarkable. Be proud of the parents you are.

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  8. Preston & Sarah SmithAugust 4, 2011 at 8:52 PM

    Adam & Becca,

    I am so glad we met this morning, and although we wished it would've been under different circumstances, we're convinced that the Lord meant for us to be in that waiting room at the same time. We will pray for your little guy. He already sounds like a fighter!

    I'm not sure if you're familiar with the Christian band Sanctus Real or not, but the lead singer (Matt Hammitt) and his wife recently had a son born with HLHS (the same condition as our son Elijah). After receiving Bowen's diagnosis, Matt began writing songs about their journey with a heart baby. These songs have been so encouraging to Sarah and I on our journey, and when we read your specific prayer requests tonight, specifically numbers 3 & 7, these songs came to mind. We know you have a lot to process right now, but if you happen to get a moment, give these a listen. Matt posted them on his blog, and they're available on iTunes. We hope they encourage you as much as they did us.

    All of Me:
    http://bowensheart.com/2010/09/15/the-morning-of-september-14th


    Holding You:
    http://bowensheart.com/2010/09/12/bowens-first-surgery/

    We hope to see you tomorrow. We're praying for your little champ!

    -Preston & Sarah

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  9. praying for all of you. one of our twins had 2 small holes in her heart as well. while a very different situation, i vividly remember the fear and worry that could easily consume us during that time of the unknown. praying for God's strength and peace to surround you all and praying for that little fighter of yours!

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  10. Praying for you all and healing for Caden!

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  11. Praying for you all! Baby Caden is in amazing hands with the doctors at Children's and you have so many people thinking and praying for you guys! -Carla

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  12. Becca and Adam, you are in my prayers constantly. I pray that you are given the best option for surgery and doctors with divinely skilled hands. I pray for Caden to be a little fighter and that he knows you are there with him. I also pray for Becca as I know she is aching to be with him and to let him know it is all going to be okay, the way only a mom can. God is going to protect and look out for your family and use you for his good.

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  13. We are praying for you. We hurt for all you are going through but trust as you do in God to take care of each need and to give you the strength that only he can give. Donny & Bekah Hamrick

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  14. Adam and Becca,

    Praying for you guys. Tomorrow my "baby" will turn 12. This is the baby who had an asthma attack at 3 months and turned blue and almost died. This is the baby that was in and out of the hospital over and again during the first 2 years of her life. This is the baby that had a seizure so bad that no one to this day understands why she is not neurologically damaged. She is growing into one of the most Godly young women I have ever met. The Lord had her all of those days- the same as he does now and forever. Every time he sent us the most amazing doctors and nurses and staff. Every single time. He had it always. The way he has Jayci and Caden.

    I have been that exhausted Momma with the newborn in the NICU (the youngest). I have cried out to the Lord begging me to let me nurse her. I have on more than one occasion literally slammed my heel to the ground and told Satan this child belongs to Christ- NO! I have lost words and just clung to Jesus with a weakness. He has you. When you are faithless and afraid. The Bible tells us do not fear 365 times for a reason. It is the statement made more than any other in scripture. When you are falling down he will fill you up. You belong to him. You are his- he is yours. Caden is his . The Lord is with the crushed in Spirit. He has his arms wrapped around you. He loves you. Desperately. Please know that I am praying. John is praying. We won't stop praying. Let us know if there is anything else you need.

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  15. We love you all and are praying the presence of God on your behalf. There are so many who are holding you before the throne of God and I pray mostly for His peace for you. Amy sends her love too. We are praying for strength for you. Thanks for sharing your journey with us. The Mercers

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  16. Waiting and praying with you. Lift your entire family up in prayer. Thank yopu for the specific requests.

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  17. Friends of Jordan and Steven. My wife and I just want to tell you that our prayers are with you all!

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  18. Praying for your sweet family.

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  19. Just read this, will now get down on my knees for Caden and all of you. May the Lord surround you with His perfect peace that passes all understanding. Much love to you today.

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  20. I will be praying for you all!! Congratulations on your little boy, too!! He is so precious!

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  21. I heard your story from keli h. and started following Becca on Twitter.

    I just shared Caden's story with my husband and all we could say to one another is that we know, in part, what all of this is like.

    A baby. Open heart surgery. No indication of how or why or when this happened. Not knowing what God has planned tomorrow or the next month or in the next year. All of that and more that is hard to articulate.

    Our own daughter, Iris, was born not only extremely premature but with several ASDs and VSDs. Open heart surgery when she finally was heavy enough and a serious 8 hour surgery and one year later and she is sassy and kickin'--a miracle to her cardiologists--with zero residual problems from it all.

    Our family is thinking and praying for you so, so hard.

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  22. Praying for you and your family!

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  23. I am a friend of your mother and I am lifting Caden and your family in my prayers.

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  24. Please let us know if the Young family can do anything to help friend!!!!!!!! We will be praying!!!!

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