Doing Well...daring to look back a bit

I have been extremely thankful that we have been able to communicate our journey through this blog.  I haven't been able to read any of it yet, but have heard bits and pieces from others from time to time.  I will one day be able to go back to the details and sit in awe at how much God did for us.  We spent sixteen days in the ICU and in many ways that seems like a lifetime, but also seems like a short time.  For a while, we were unable to think of anything past what was going on in the immediate. We just prayed for a break in the roller coaster ride because Isaiah needed it and we were beginning to need it.

When Isaiah was brought back from surgery after his initial stent surgery and was on the ventilator, I wasn't too surprised.  Once all the suctioning, alarms beeping and distress from Isaiah began, I found myself losing the mental battle to stay afloat.  Small things became big concerns for me and I lost the "forest through the trees" as they say.

That is when our "third brain", my sister, became exactly what we needed.  I had to keep the details simple so I could manage and Chloe and Steve remained by Isaiah's side and kept up with every detail. Guests who came came at the perfect time to distract me from those moments when we were investigating and, ultimately, ruling out the "big, bad, uglies".  It was really amazing how visitors came at just the right time.  We could never have done this alone.  I feared the nights...the length...the changes...the unknowns.  Friends even spent the night with us.

Once Isaiah came off the ventilator and developed withdrawal symptoms and a severe case of ICU delirium, Steve found himself overwhelmed.  He did not expect it and in the beginning doctors weren't sure what was all going on.  It is tough to see your child spitting and non-verbal; eyes dilated and no acknowledgment of their surroundings.  We prayed him through the nights and I found out that this was when my abilities to care for him would take over...Steve and I were created perfectly to "tag team" this journey.  During the first night off the vent, Isaiah made a delirious face that we had seen Evelyn do one night when she was sleep walking and we put her back to bed.  I knew instantly God had given me a nugget of hope and that our little boy was in there...he just needed help.

I worked with him the next few nights and during the day to get his sleep-cycle and days/nights back in order.  Those nights proved to be a very beautiful thing.  I once told him I was going to sing him, "Jesus Loves Me" and that I wanted him to join me.  I had no idea if he could.  While singing, he sprinkled in a word or two and then finished the song in a hurry with the last three words.  Although he told me repeatedly that he could not sleep and his eyes and body confirmed that, I placed a blanket over his eyes and continued to try to help remove the external stimuli to slowly work him back to a place of peace and rest.

We prayed over him and he would request us to pray for his blood pressure or other things.  When his arms could not be controlled and seemed to be floating in air, I asked him what I could do to help him with his arms.  He replied, "Throw them in the garbage."  When he calmed enough to pray and try to sleep we would remind him that God is stronger than the "monsters" that were tormenting him.  By the second night he began to fall asleep and asked, "but what if the monsters come back?"  Then he said, "Never-mind.  God is stronger than the monsters."  He took hold of that truth and was able to find peace and rest.  What a beautiful thing to watch.

Soon we would like to head back to the ICU and say "hi" to all the nurses and doctors that will forever be endeared to our hearts for their involvement with helping our son.  Dr. S, who slept at the hospital when Isaiah was most critical...who was awake with us at all hours of the night and who never stopped trying to figure out each hurdle.  The nurses who could keep track of every IV and line coming from his little body.  Those same nurses who never left his room or sat for more than two minutes during an entire shift.  Nurse J was divinely scheduled for the nights when Isaiah was most critical.  One morning when she signed-off to the next nurse and gave her a briefing, her comment was simply, "I'm just having a hard time wrapping my brain around what all happened last night."  Those ladies worked. They were more than a blessing.

Here is a picture of Isaiah asleep with a blanket over his eyes.  We'd like to bring sleep masks back with us. Some parents may not know to use a blanket to help "force" sleep.  We had to cover Evelyn's eyes with a burp rag when she was first born or else she would wake up the second her eyes caught sight of anything!  Because of this we knew exactly what to do for Isaiah.  The ICU does not currently have any sleep masks.  If you know how to sew and you feel inclined you can send a sleep mask to our house to bring up during our visit.

Thank you again for your love and support.  Each day is a beautiful day to be back as a family watching Isaiah get more and more energetic and making progress to restored health.  We will know more next week how his "inside owie" looks.  We are thankful he has remained healthy and no fevers!