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.