Thursday, November 8, 2012

Has it really only been a week?

It blows my mind that it was a week ago right now that I was filling out paperwork to admit Caleb to the hospital for a heart cath... it feels like a month has passed.  The days are inching along and at times I feel like I'm going to lose my mind in this hospital.  I knew I would have good days and bad days (or good hours and bad hours).  On Tuesday night I started to feel like the walls were closing in on me and I couldn't possibly imagine doing this for an indefinite amount of time.  And I started thinking about how even if a new heart comes, there's no guarantee his body won't reject it.  And the fears and worries and depressing thoughts started to build and build into an oppressive weight on my shoulders.  But yesterday people started praying for me, and I felt a peace with me throughout the day and by the evening the oppressive weight was lifted and we had a great night.

Caleb is doing really well.  It is OBVIOUS the grace of God is on him.  He is laughing, playing, a happy little guy.  The nurses think he's adorable.  And they are correct.  There is such a huge improvement in his mood and of course that makes me relax.  We have moved up to the Heart Center and this is where he'll be until he gets a heart.  We had some great news yesterday... Medicaid is going to cover the transplant!  His condition qualifies him as "disabled" and the Riley people worked their magic and got Medicaid to speed things up.  Caleb should be able to be officially on the transplant list very soon.  

We also had another great moment this morning... the Transplant Coordinator, Debbie, whom we now meet with a lot, talked to another couple whose son, Logan, is Caleb's age and just received a heart transplant in May.  They were here today for a checkup and Debbie asked them if they would meet with us.  It was wonderful.  Their names are Justin and Holly and their kids are the same age as ours.  Their little guy, Logan was amazing; he was running around the room, looked so strong and healthy and it made my heart swell with hopefulness that Caleb can have that energy someday too.  Holly told me how before his transplant, Logan was tired and weak and never able to run or climb... just like Caleb.  Within days, he had more energy than he'd ever had and now he looks like a normal little 2-year-old.  Meeting them was so encouraging and I'm looking forward to getting to know them better.

Today is a day where it's just so apparent that people are praying for me.  Your prayers keep me from being afraid and weary.  God keeps giving me strength and endurance even when darkness tries to creep in and steal my joy.  Keep the prayers coming- they really do make a difference in our life.

Prayer Requests for Today:
1- Pray that the listing process moves quickly and that Caleb can get on the transplant list right away
2- Pray for us to not get discouraged and lose hope
3- Pray for Jonah to feel secure even though his little life is so disrupted right now.  Pray for us to find time to connect with him.

I'm wearing my Pray for Caleb bracelet proudly today and thinking of all the amazing friends who are supporting us and praying for us.  We love you all!  And thanks John Dugan for the great bracelet! 


  1. I viewed your blog thru a couple of my family members, dena, Debby and Emily. My name is Angie Hammond (dehart). I actually work on the heart center at Riley and have been anticipating you coming! It was interesting to hear you met Logan and his family because I took care of them and they are wonderful! I have been praying for you because I know the struggle you are facing. I have a 22mo old little boy as well so it does hit close to home! If you need anything please let me know, I work weekends usually Saturday and Sunday.

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  3. Hi I am a friend of Stewart & Anna Livingston and that is how I came to your blogg. I really felt the witness of the Holy Spirit when I started to pray over your list. I am telling you this so that you know that God is on your case in a BIG WAY!!!
    Blessings on you all

  4. Thank you so much for keeping us up to date on Caleb. I have never stopped praying for you and your family. Hang in there God is working. Prayers, Prayers, and more prayers are continueing to go up for you.. Love you all so much.
    Shirley Dobbs

  5. I have this uncontrollable joy lately. Seeing Caleb today full of smiles, talking, interacting with me more than he ever has really brought more joy to that. I am so amazed at how this little guy that barely talks is bring our community together and even reaching further than just Indiana. I can see God all over this situation and I truly feel we are bringing him sooooooo much glory through this circumstance. Katie and Dan seeing your strength, trust and faith in this has really encouraged me and even restarted that fire in me. I love you and your family.

  6. So happy Medicaid will cover Caleb's transplant! And what a joy for you to meet Logan and his family-that little blessing brought lots of hope to you I'm sure!
    I have to tell you, I know what you mean about feeling prayers being lifted for you. When I was rushing to Riley for Eli's emergency surgery, I was on the phone with my co-workers. They told me that they were praying right then and there; they had a prayer circle going. Once I hung up the phone, I could feel the love and mercy God had for me and Eli. It is amazing what He does for us.
    You are such a strong Mommy and Caleb is lucky to have you and his family. Prayers are continued that Caleb continues to do well and once he has his heart, he will thrive and be a miracle that people will talk about for years and years!