Once Upon A Prayer

Wednesday, October 10, 2012

Lily's Heart Catheterization

A photo taken for Mommy since she she was at a different hospital 
taking care of Mackenzie.  Lily melts my heart.

Lily was the second case of the day.  They anticipated that her heart catheterization would last for two hours.  They took her and Papa back to pre-op for her "princess gown"...topped off with Papa's flip flops.

Three hours into the heart cath, the nurse came to get Jacques because the surgeon wanted to speak to him.  Jacques called me so that I could be on a conference call.  What the cath team found is nothing short of shocking.  Lily's Fontan that she had done in July has absolutely no continuity with her right pulmonary artery.  The photo below gives a vivid image of what Lily has been living with since her open heart surgery.  Her right lung is not getting any blood flow.

After 5 hours in the cath lab, the surgeon finally gave up. The team attempted to fix Lily's right pulmonary artery but determined this will need to be done through open heart surgery.  As the surgeon tried to lace a wire through her pulmonary artery he said that a "fresh" artery would be like mud, but Lily's is like concrete.  After the procedure, the surgeon conference called with me again, and the devastation in his voice was palpable.  He said that there is not a clear path to go from here, and the open heart surgery she needs will be very risky and difficult.  Our hearts are very heavy tonight.

Lily woke up from her anesthesia madder than a hornet. Baby girl has been eating her Wheaties, and Papa reports that the make-shift straight jacket for her leg (she cannot move her leg for 6 hours) could not contain her. They placed her in a chair on Papa's lap and he became her harness. Woah nelly! After two and a half hours of screaming and fighting, she finally gave in to sleep. Lily is in the Caridac Intensive Care Unit just a few doors down from where she and I lived in July & August. The surgeon said that the cath was very invasive and the several hours of trying to lace her right pulmonary artery with a wire will leave her in a lot of pain. Prayers for comfort and sleep tonight!

"There is wonderful joy ahead even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold, though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring much praise and glory and honor on the day when Jesus Christ is revealed 
 to the whole world." 
1 Peter 1:6-7 


  1. I found your blog several months ago and have followed your sweet girls' medical journeys. What a trial you have had and are still living. What beautiful little girls with a mommy and daddy to now be with them while they get the medical help they need. Stay strong. Praying for you - Julie.

  2. We pray she's plodding around in daddy's sandals again very soon. Sweet baby.

  3. I, too, will be praying for you and your precious Lily and Mack. It's obvious that God worked through you to get these little ones out of orphanages and with a loving family who could provide them with the medical care they need. I pray you have the strength you need to get through these difficult times, and I pray for complete healing for Lily and Mack. And many blessings to you as you help these precious girls through their surgeries and recoveries.

  4. praying for peace for you all, comfort for sweet lily, and guidance for her doctors. i remember the day lily's file first hit the shared list. an absolute angel. i prayed that her parents would find her quickly and swiftly to get her the care she so needed. i am so grateful that you all have found one another...

  5. Hi, I am following a blogspot (you can google for it to read it yourself) "Loving Life with Lexi and Ivy Joy". Ivy just recently had 2 open heart surgery repairs at Boston Children's subsequent to a terrible open heart repair done at Phoenix Children's. So, please review the miraculous healing of Ivy that is taking place at this remarkable hospital. Hoping you can get a second opinion for your sweet Jillian there!!