Once Upon A Prayer

Tuesday, April 23, 2013

Lily Grace's Heart Check-up!

Yesterday morning Lily had her Cardiology Clinic visit.  After multiple emails and phone conversations with her Cardiologist over the past two months, I was prepared for "hard".  Several weeks ago, Lily's surgeon decided that the risk of death from another attempt to repair her right pulmonary artery and connect it to her heart was much higher than the slight chance that her anatomy would actually accept the repair the second time around.  Jacques and I understand his trepidation and trust his judgement.  The Cardiologist's are consulting with Children's Hospital of Philadelphia, as well as Boston, just to make sure that nothing is being overlooked at this point.

Lily getting an Echocardiogram

 Lily's special heart!

 One bit of exciting news is that over the past two months, Lily has gained a pound!  Check out her little tummy roll.  A pound might not sound like a lot, but every single ounce counts.

Lily and her fistful of "Clinic Day Suckers"

Lily's resting oxygen saturations were in the 70's during this visit....considerably lower than her goal range of 85-100.  We met with a Pulomonologist who put Lily on two nebulizer medications twice a day for the next few weeks to see if this improves the function of her one lung.  I have also been asked by her Cardiologist to chart her bedtime oxygen saturations to see what they are doing.  He is considering putting her on oxygen during the 12 hours she sleeps at night (yes, we are blessed with two VERY good Chinese sleepers).  The oxygen will give Lily's body 12 hours a day of relief from low oxygen saturations, and the ill effects that these cause long term.  

This visit was so different from all of the other clinic visits we have had over the past 11 months.  Our discussions were focused on pallaiative care, and how to help Lily live comfortably and maximize her time left with us.  Typically, we are discussing surgery options and how to "fix" and "repair" Lily's heart.  Over the next few months we are going to be discussing Lily's options for a heart/lung transplant with several nearby transplant hospitals.  The consensus so far is that her chances of getting a heart lung transplant is about as likely as winning the lottery for #1 her to even get one and #2 for her to survive the transplant. LOTS to pray and ponder because the last time I checked, the lottery was nothing to our God!

After the hospital radiologist gave Lily a tooting Pumba 
(during her long stay),
she gets an absolute kick out of this guy!

 Although Lily is Chinese and Dora is Hispanic, 
the resemblance is remarkable!

As we were leaving the Clinic office, Lily sang "Jesus Loves Me" at the top of her lungs while twirling herself out the door.  The Cardiologist turned to me and said, "Lily is the most healthy looking, very sick child I have ever seen".  I was not really sure how to respond, until I got to the car and it hit me. ..
He gives power to the weak, 
And to those who have no might He increases strength.

Isaiah 40:29


  1. Amazing....that verse from Isiah is SO your sweet Lilly! Believing for healing right alongside you! Hugs!

  2. I recently stumbled on your blog...I remember seeing her on the shared list a while ago and am so very happy she has a family! Praying for her, and you.

  3. I absolutely LOVED this post! Not the palliative care part, of course, but the JOY that flows in spite of it! I am inspired! God is so very GOOD! So glad He caused our paths to merge for this journey....


  4. Wonder of wonders...Lily shouting the goodness of God in her weakness. Welcome to the special family of those who live and love little ones as if there is no tomorrow.
    Be filled with Him,
    Sarah Risley

  5. What a beautiful way to summarize the doctors thoughts. Our God is a miracle working God and we will pray you through these obstacles. Keep your mustard seed of faith and you can see mountains move. Sending prayers for healing!

  6. I love your sweet Lily's smile and endless joy! He gives us so much strength when we are weak, and a peace that passes all understanding. We are praying for each of you.

    Much love, Angie J.

  7. We are on this train, too, in the car right behind you. What a joy-filled smile and love the "roll". Praying that God makes His plan for Lily and your family very clear so that peace will surround all of you.