Saturday, August 13, 2011

Quick Update

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.

21 comments:

  1. So glad for this update! Will lift up ALL these requests you listed. Love knowing how to pray for ya'll and will continue to do so. Caden is so so so precious and those and I love seeing his sweet eyes. Love ya'll!!!

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  2. We are praying for you. Important to know: do you have health insurance? If not, could you qualify for Medicaid? Sometimes new babies can qualify if they have serious medical issues even if their families otherwise couldn't.

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  3. I pray for you all everyday.... You are much stronger than I could be and I continue to pray for your strength!

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  4. I will include the baby on my prayers.

    Cassy from Guitar Made Easy

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  5. There are advocates that can help you figure out your medical bills when self employed or on limited income. Ask the hospital staff and they should be able to direct you to that information. Also, some hospitals can write off expenses when you are paying out of pocket. Don't be afraid to ask about the possibility of that or also for a payment plan option. If you don't feel comfortable doing that or just don't want to deal with this, assign a good friend or family member to be your advocate in this regard as I am sure everyone is more than willing to help you in any way at this difficult time.

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  6. Thank you for giving us specific prayer requests. It helps knowing how to pray for y'all. I loved seeing Caden's eyes in that one pic!

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  7. We are praying for you guys as well. We love your hearts and have since we first met you both through Camp Grace. Your faith and honesty are encouraging to the rest of us. We are praying for his healing and for your peace.

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  8. Thank you for the update and for giving specific prayer requests. I am praying for Caden to take to the changes well and to continue to get stronger! I am praying for Jaci that during this time she finds peace, comfort, knows that her baby brother is in the best hands, God's, and that you both love her and nothing will ever change that. I pray for you and Adam to get some much needed sleep, continue to get stronger mentally, emotionally, and spiritually. I also pray that God blesses you with an abundance of financial support to relieve your stress and focus on spending time with you two precious babies, Caden and Jaci. In your blog you said you can not do this, you do not have to go through this alone, God is with you and tons of people to help you every step of the way! God will continue to bless you and your family! Read over Philippian 4:4-9. These verses are helping me through something right now and think they might help you as well! May God bless you and your family!

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  9. Oh Becca.
    I am so worried about you being exhausted. You just gave birth and you haven't been able to rest : (. I am praying for Jayci right now. We were on our way to the pool today and I pulled the car over and had the kids pray. I was just thinking of all of you at that moment. You are never far from our thoughts.
    Praying. Praying. Praying.

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  10. I don't know where to start. I don't know the Stanley's. I am a simple mother of two of my own beautiful children and married to my wonderful high school sweetheart for 10 years this year. I recently was having some difficulties finding my way through some clouds in my Faith when my best friend, my father, passed of Liver Cancer. It has taken me a long time to slowly find my Faith again. I am now trying to reconnect myself and at the same time teach my 6 year old daughter how to build her relationship with the Lord. I have tried to inspire her through my own clouds. I laid my two precious angels to bed tonight sleeping soundly with the distant rumble of thunder. I sat down to check in on my friends and family online and I stumbled across this posting on a friend's wall. I read the story of little baby Caden and the struggles that he is going through. But what I embrased more was the absolute love and faith that his parents have. I am typing this email in pure tears knowing that this small precious angel from above is fighting for his life and he opens his beautiful blue eyes for his mother. Such a small act. Something most of us take for granted. I have rarely seen anything more beautiful in my life. I sit here ashamed of how much I take for granted and how silly my little clouds are for holding me back. Too many times I have been too busy working, paying bills, cleaning up after dinner, straightening my house to recognize how precious my two little angels are. And for that I say Thank you. Thank you for sharing your hardest of moments with the world and for keeping your divine love strong and for sticking together and for creating such a precious angel. Tomorrow when my daughter wakes from her precious sleep, I will read Caden's story to her. Together we will pray and the day after we will check his progress and pray again and the day after and the day after. You have given me great inspiration and I think I am once again strong enough to teach my daughter divine love for our Lord. Thank you again. Your family is a miracle and your love is undeniable. You will get through this and you will be whole once again. The Ray Family

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  12. Caden is a very quick learner...I just know it! He is fighting with the Lord's, his parents, and all of our strength. Rest, sweet Becca and Adam...your Jayci will be just fine...she's in the Lord's care....and I must say she was an absolute gem with H & T the other day..so darling! Stay strong...yet allow yourself to be human...rest and sustenance is mandatory...His grace will abound. We love you all so much!

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  13. Becca, I just have to tell you that your strength and your faith is such an inspiration. We are all praying for Caden's healing, for strength for your family, and for your sweet girl. It is ok to not be strong at all times. You ARE being a wonderful mom to both of your kids and sometimes allowing yourself to break down allows you to be so even more. In your pictures you can see so much love in those beautiful eyes of his already. He is so blessed to have you and your husband as his parents.

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  14. I've still been praying for EACH of you every day and am refreshing your blog page multiple times per day for more updates. I am not one who cries often, and though there have been some potentially devastating things in my life recently, I have cried more tears for you than I have for myself. How amazing is this love of God that is in Christ Jesus?

    Six years ago to this day, one of my best friends was admitted to the hospital where he spent the final six weeks of his life. It is a story that still reaches many, many lives.

    www.prayforbj.blogspot.com

    We would have despaired unless we had believed that we would see the goodness of the Lord in the land of the living. And we see His goodness every day. May He grant you oceans of grace to be strong (though you are weak), to take heart, and to wait for Himself. He is unspeakably tender and infinitely compassionate. You are so, so loved.

    Brittany DiSalvo

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  15. I haven't left a comment, but I have read every post and have been praying... from even before Caden made his entrance into this world.

    I know it is hard to talk about (I ab.so.lute.ly) hate talking about money, but I appreciate your honesty. It helps us know how to pray. ; )

    Please keep the updates coming. You do a marvelous job with them!!

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  16. I also continue to pray for little Caden, Jayci as well as for you and all your needs. Seeing Caden's beautiful eyes made me smile knowing God is working in his little life! Blessings as the days go by with healing for you all!!!

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  17. We went through a similar station 8 years ago with my son. We were able to get Katie Beckett Deaming Waiver ad still have it today to cover his bills. It s not dependent on income. Ave you checked into that? He would qualify.

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  18. Sweet little Caden,
    As part of another religion/faith, I want you to know that we are all united in your fight, pain and sorrow that you and your family are going through...
    We all pray for you to get better and stronger and we follow every little inch of your progress every time your mommy writes about it...
    Only 9 days into our world and you already went through soooo much....May you and your family be in peace and good health.

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  19. I came across your blog from a friends. I just want you to know that we are praying for Caden and your entire family. He is an absolute doll.

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  20. I came across your blog via another blog. I just want you to know that prayers are being said for your precious Caden here in Texas! We are praying you through little man.

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