Saturday, February 25, 2012

and so we danced.

Last Friday, Abigail had been running a fever for a few days, wasn't eating as much, and had a cough and runny nose.  I thought it was viral.  I also knew that a Friday meant I went to the doctor then, or to the e.r. if things changed over the weekend.  So we went to the doctor.  Friday night her temp hit 106.  She likes to spike them high.  And she continued to run at about 102 all weekend.  Monday brought about a fever less little girl.  Just a virus.  She has a lingering cough, but only required a few extra breathing treatments and some extra snuggles.The issue with a virus though, is that if you have a heart defect, and pulmonary hypertension, a respiratory virus means much worse things.  So when Shilo started coughing, Tuesday, we checked her temperature obsessively.  She still was happy and alert.  She was eating.  Wednesday her eating dropped off so we put the ng tube back in.  Thursday morning she started working a little harder to breathe so we made an appointment with our family doctor.  By the time we saw her, Shilo was going down hill quickly.  They called ahead so that Riley's e.r. would be ready to admit her.  So yes, here we are, in Riley.  Mama has the virus as well, but, thankfully, for an adult, it is just a cold.  No fever, just a runny nose, and a cough. 
Since when we were here in December, Shilo decided to post the highest tsh level anyone here had ever seen (that is causing two doctors to team up and attempt to make a federal law that tsh levels must be checked at birth by all states: this is a long story with lots of explanations so moving on), I hoped that maybe she wouldn't be quite the attention seeker this time.  I knew, though, that day 3-5 of the virus it tends to reach its peak.  So yesterday she spent a lot of the day uncomfortable.  Mama was all she wanted.  I help her upright on my shoulder, and patted, and patted, and patted.  The nurse kept telling me she was 'spoiled.'  I kindly ignored her.  They finally came and turned her o2 back up and she settled in to rest a little more comfortably.  For a bit.  All night long it was up and down.  Snuggle, pat, love, rest for a bit.  Then the nurse would come in to check her blood pressure, and we would start all over again.  At three we were up for about an hour and a half.  I stood with her patting, and swaying.  I turned on my 'Shilo' list on Grooveshark and sang softly as we danced.  I was beyond tired.  My body ached.  And I was loving this moment of her resting comfortably on my shoulder while we danced.  Slowly, tenderly, and with an intimacy that only a Mama and her daughter share, we danced.  I closed my eyes tightly and kept saying to myself, 'I choose joy.'
Things only got worse from there.  She had to be intubated this morning.  It didn't go well.  They had to do chest compressions on her because her heart rate dropped too low to pump blood throughout her little body.  She is laying in her bed sedated and breathing through a tube.  I can't hold her.  I've spent the day doing the snotty awkward cry.
But if I close my eyes and lean back, I can still feel the weight of her little body on my left shoulder.  I can feel the tiredness in my arm from patting, and patting, and patting, and patting to keep her happy.  And I can feel the joy of the hour and a half that we danced in the PICU together.  Just Mama and her youngest daughter.
We are by no means out of any sort of woods yet.  All we have at this point is our prayers, and your prayers, and our God to be able to heal her.  Virus don't go away with medicine.  They have to run their course.  So please join us in praying that Shilo would recover quickly.  I want to dance again.


  1. Prayers being sent for you to hold & dance with your baby girl again soon. I hope it's a very speedy recovery.

  2. Sending prayers your way! Hang in there guys! Shannon

  3. Praying for you all!!! My heart hurts that you guys are going through this!! Praying you and your beautiful baby girl will dance together very soon!!

  4. You just broke my heart with this post. Praying!!!!

  5. Sending prayer. You are both so strong! Something tells me there are many dances for joy in your future :)