Thursday, February 3, 2011

hard days

Sometimes Daniel and I just have to take a minute and walk away from Caleb's bed to let out some tears and gather ourselves.  We just came back from one of those little moments, and I just said to Daniel, "I can't believe this is our life."  What a surreal week.  Jonah came to stay with us yesterday and this morning we were all three lying in bed watching cartoons and there was a bear talking about hibernation.  I think it might be nice to push a button and just hibernate through these weeks.

I know people have been surprised to hear that Caleb will now be having surgery, considering how great everything seemed the first few days.  Believe me, it's hard for us to believe too.  Caleb looked great for 4 great days.  Then on Monday we had a successful heart cath and were told we were going home by Friday.  Monday night we went out to dinner to celebrate.  When we came back to see Caleb at 8:00, we came through the door of the NICU and there was a flurry of activity around Caleb's bed.  While we were gone, Caleb's heart rate suddenly shot up to 200, he became unstable and they couldn't figure out what was wrong.  I'll spare you all the medical jargon, but basically it was so bad that we almost lost him.

It was the worst, darkest night of my life standing next to his bed unable to do anything while all these people tried to figure out why my son was not recovering.  They got him stable in the middle of the night, but still didn't know what had happened.  Tuesday they thought maybe he just had a hard time recovering from the cath procedure.  We got to hold him, feed him, and thought he was on the mend.

Then again, in the middle of the night, he had another episode and had to be put back on the ventilator.  When we talked to the doctors, they were very concerned.  The cardiologists came and did an echo and found that too much blood is going to his lungs and not enough to the rest of his body.  The only real solution is surgery.  Yesterday was a rough day, watching Caleb struggle and suffer and just having to wait until the docs figured out the problem.  He is stable again for now, but we are getting ready to be transferred over to the Peyton Manning Children's Hospital this afternoon, in prep for surgery in the morning.  The doctors are all in agreement that this is what he needs so we are thankful for clarity.  Those hours of not knowing what was going on were brutal for us as parents.  Right now we're sitting by Caleb's bedside, waiting on Dr. Abraham, the surgeon, to come meet with us to go over what we can expect over the next couple weeks.

I don't think I'll ever be able to help people understand what the last few days have been like.  Your prayers and encouragement have been a lifeline to us in the most painful time in our lives.  Please, please pray for tomorrow's surgery to be a success and for Caleb to recover quickly and without any additional serious episodes.  Pray for God to sustain Caleb's life.  Pray for us.  Pray for courage, peace, and for God to sustain us for the inevitable ups and downs of having a heart baby.


  1. Oh, Katie,
    I cannot imagine what you are having to endure. I am praying for all of you and the doctors right now. Just know you are loved and covered in prayers. Amy Martin

  2. We are praying for all of you to find strength from the Father and peace that endures in all circumstances. Rest in His presence today and in the days ahead.
    Ed & Deb Breeden
    Anderson, In

  3. I haven't spoken with you on the phone but I hope you've been getting my texts. I'm praying, my Mom is praying, some of my friends are praying, my small group is are very loved and I know that in addition to those I just mentioned, you have an enormous network of people who LOVE love love love love you.

    God is watching over you no matter what and I hope you can feel my virtual hug. Hang in there guys.

    Rachel (Frederick)

  4. Katie and Daniel,

    We all feel like we know you personally here at our house. Safe in the arms of Jesus...that's what keeps running through my head. We are praying for you all. For every person in your life. We don't know all the names, but we are bonded to you in prayer. Much love to you.

    Jodi Atkinson

  5. Katie and Daniel,
    We will continue to pray for ALL of you, especially Caleb! What a beautiful baby, congrats!
    Our God is a loving, healing God and will provide everything you need as each hour, day, week unfolds. I pray for the most amazing peace and comfort for both of you.
    I remember taking care of parents and their precious little ones when I still worked as a NICU nurse. I am certain you have some amazing nurses/doctors to help you through all of this! I will be praying for them too!
    With love,
    Lisa Coy

  6. I have never meet you. Carly Sullivan post you needed some prays. From one parent to another I know the pain and the fear you are going through. My family will being praying for your family. God Bless you. I wish you all the Best.

  7. Your mother has kept me up-to-date, sweetie, but thank you for the post, it's easier for me to comprehend after seeing it in writing. I've been praying for Caleb and your family and WILL continue with the prayers.

    Love you,

  8. Katie and Daniel, Our congregation of believers have been praying for you, Jonah, and Caleb since we heard about the first sonogram that showed there was a problem with Caleb's heart. We have shared every entry on Caleb's Heart with our people and we have prayed with you and rejoiced with you. You are all in our prayers this day and we know God hears and answers them all!! It's at times like this that we know for certain why our faith must be strong because you will need every bit of faith you can call upon to trust that God will do for Caleb exactly what needs to be done. God bless you dear ones! You are loved and many, many prayers are holding you up this day!!