Once Upon A Prayer

Thursday, January 10, 2013

7 weeks

When we walked into the hospital 7 weeks ago for what we thought might be a short stay for a chest tube placement, NEVER in a million years did I think I would be sitting here typing this blog post tonight.  I actually laughed at the women in admissions when she handed me my visitor's badge that said it expired on 12/23/2012.

"Surely, we won't be here that long", I voiced.  HA!

Lily has endured so much in the past 7 weeks to include 4 chest tube placements (2 on each side), an open heart surgery through throacotomy to attempt to reattach her right pulmonary artery to the gortex tube in her heart called the Fontan, an NG tube for feeding, a chest x-ray every...single...day (sometimes multiple times a day), blood draws every...single...morning, a new IV placed on average every other day, a PICC line, IV antibiotics to treat a bacterial infection, which ended up leaving her susceptible to C-diff that she acquired, a bleeding tushie from diarrhea, multiple echocardiograms, and several episodes of learning the hard way that she is very allergic to morphine, oxycodone, and ativan.

Lily spent her first Thanksgiving and Christmas 
"stuck", as she says, in the hospital.

Lily was a trooper and smiled through just about everything for the first 3 1/2 weeks.  And then she realized she was DONE!  The sweet smiles, and "sher sher" (thank you in Chinese) are gone.  I can't say I blame her, as I have felt the exact same way.  The difference from our first extended hospital stay over the summer while Lily recovered from her Fontan surgery and this stay, is that over the summer she made daily progress toward going home.  This time around, we continue to experience setback after setback.  Lily begs, "Get me outta here Mommy" incessantly, and cries for me to take her home several times a day.  The only thing that brings her joy right now is when we discuss how we will bust out of here once all the "yuckies" are out of her belly and lungs.

For a little girl who has only known what "home" is for 7 months, she really has a solid grasp of it.  Even through our darkest hours here, I still find myself smiling because after all, that was what Jacques and I so desperately wanted and desired for Lily since the day we saw her precious face.  We wanted Lily to KNOW and experience the unconditional love of a family, and learn that she is s cherished child of God.  Even at the young age of 3, she gets it, and perhaps appreciates her family more than most grown adults even do. 

The nurses here are amazing.  They truly love Lily, and take such good care of me even though I am not their patient.  They treat us like royalty.  There is no doubt in my mind, that I would have gone absolutely crazy without their concern and compassion. 

So, what happens from here?  Lily's electrolytes, potassium, sodium, and albumin are still dangerously low.  She will continue getting her main nourishment through the NG tube.  Lily's appetite has increased, and she craves "salad with dress-up" (balsamic vinegarette) for breakfast, lunch and dinner.  Her resting heart rate ranges from 155-170, and her respirations are about 50 per minute...obviously this is not good at all.  Her chest tubes drain between 700-1,000 ml per day.  The most current plan is for Lily to have a heart catheterization next week in order to open the man-made hole in her heart, called a fenestration.  The hope is that this will help her pleural effusions to stop.  Unfortunately, this is only a temporary fix since the fenestration will eventually close again on its own.  We will pray that when her fenestration closes, Lily's body will accept the new anatomy that Dr. Jonas gave her over the summer.

Why?  Because her life depends upon it.  
Please pray!


  1. Praying for sweet Lily and you all! Praying SO HARD!!!!

  2. Your entire family is in our prayers. Two weeks in the PICU was enough for me and felt like an eternity. I can only imagine what seven weeks (and counting)in the hospital must feel like. Bless you all and keep your strength!

    -Andrea Olson

  3. She is darling and I can see why you fell in love! I am sending you my prayers that Heavenly Father will heal hear and that you soon can return home.

  4. Praying boldly for a complete healing!!!

  5. Look at that sweet face . No wonder she had your heart right away ! May she be blessed and may healing prevail.
    Praying for you all!