Once Upon A Prayer

Wednesday, July 18, 2012

Day 6 - Mommy Knows Best

Thank you to all of our dear friends who have helped us out in so many ways with our three older girls over the past week.  Because of "you", I have been able to be by Lily's beside 24/7, and Jacques has been able to visit us a few hours everyday.  The nurses in the Cardiac Intensive Care Unit are amazing!  They clearly love what they do, and boy does it ever show.  As the patients improve, the nurses go from being at the child's bedside full-time, to checking on them as needed.  By all indications, everyone agreed yesterday morning that Lily had made remarkable strides, and that she would be moved to the Heart and Kidney "step down" floor on Wednesday (Day 6).  The nurses were super busy all day yesterday with two newly admitted teenagers, and they continually apologized to me for not being around more to check on Lily. 

Mommy knows best.  My gut told me all day and evening long that something just wasn't right.  I am sure I was pretty annoying at times with my persistence, even though the nurses never made me feel that way.  At first I noticed that Lily's hands and feet were very cold.  The nurses took extra temperature readings just to assure me that she was fine.  The next thing that I noticed was Lily seemed to be taking in small shallow breaths a million times per minute...yes, that is a gross exaggeration, but it sure did seem like that!  And then it happened, Lily started ignoring me.  I would ask her questions and she would tune me out.  I would reach for her hand and she would pull it away.  I would whisper in her ear that I loved her, and she would roll the other direction.  This was not my Lily girl.  She was distressed, in pain, irritable, and just plain pathetic.

The nurse ran a blood gas and discovered her lactic acid was 9.  She assumed this was wrong, and ran it again, but this time it was 10.  The Charge Nurse came in to assist and she ran two more gases, one from her arterial line and one from her Fontan line.  There was no mistake...Lily's lactic acid was 10 times more than what it should have been, and her blood pressure was through the roof.  At this point, her room started hopping.  They gave Lily lots of fluids, and they began her on Milrinone which is a drug given to patients who are in heart failure.  They also discovered that Lily's sodium was very low, and that her glucose level was a 38 (also dangerously low).  They started a glucose/sodium drip, and gave her a bolus of sugar.  I was warned that if she did not make a drastic turn around, they would need to reinsert the breathing tube again.  A chest x-ray was done, and they discovered that Lily's lungs were full of fluid.  After a bit of manipulation, they were able to unclog her chest tube hose which had backed up from a clot, and tons of fluid drained out. 

One of the sweet nurses who had taken care of Lily the other day was in the room assisting, and all of a sudden she said, "Where is Lily's bow?  This sweet girl needs her bow."  Earlier in the night her bow had fallen out, so I put it to the side since she was tossing and turning in discomfort.  Perhaps the best medicine of all, was that Mommy placed her hot pink bow back on top of her head.

Thank you prayer warriors for going to battle with us.  
The battle has just begun,
but thank goodness the war has already been won!

Whom have I in heaven but you? 
And earth has nothing I desire besides you.
My flesh and my heart may fail, 
but God is the strength of my heart 
and my portion forever.
Psalm 73:25-26


  1. I am continuing to keep all of you in my prayers. The Fontan is my daughter's next step sometime this next year. As hard as it is to see your Lily go through all of this, it gives all us other heart moms strength to see her overcome each of these obstacles. God bless your family richly in these next few days.

    ~Angie J.

  2. Yes she does:) I love you so much! God bless you and your family!
    Danielle McGonnell

  3. Hello, you do not know me (we have a mutual friend on facebook and they put up a link to your page...for prayers for you baby of course.) Anyway, I know your story all too well. My sweet girl had major heart surgery two years ago July 12 and July 17 we almost lost her because she was septic. Her lactic acid was 24 and she was also shunting her blood. Today she is alive and well only because God gave us a miracle that day and that is what I am praying for for your family. May God hold your little princess in His hands and heal her in everyway.
    Prayers from Kansas,
    Kimberly Aberle