Once Upon A Prayer

Thursday, December 20, 2012


Lily's left chest tube that has been in place for 3 weeks now has pulled out and is no longer draining her lung. We are gearing up to head to the procedure room where Lily will be drugged (but not sedated) for them to try to reposition and re-suture her left tube. Lily's right chest tube is full of huge blood clots, so they will also strip and flush her right tube. Lily hates when anyone even breaths near her right side so this is bound to be awful too. I am choosing to be with her even though they recommended that I do not come. This will be very painful and probably horrible to watch as well. Lots of prayers requested!!!

A few hours later:
Not that I need to tell all of you this, but Lily Grace is the bravest, strongest, and sweetest little girl ever!!! The procedure was extremely painful, and the drugs hardly touched the pain. Her tubes are now both repositioned, and she drained a ton more fluid during and immediately after the procedure. Her eyes are still swollen and puffy from screaming and crying, but the nurses showered her with gifts and gummy bears as soon as we wheeled the wagon out of the procedure room. 
Thank you for praying...I only cried a little bit ;-)

Wednesday, December 19, 2012

A new bow...

Just a few hours later...
still feeling yucky, but smiling at her
new hairbow.

This little empress just blows me away...


Lily woke up feeling very yucky this morning.  
What's a girl to do when she wakes up feeling yucky?
Decorate your throw up bucket...
of course!

Monday, December 17, 2012

Bummer Bear

Lily got a special gift from Mommy and Papa this morning. 
This special little bear has a matching scar and mended heart 
just like our brave little empress Lily Grace. 

Pain is still a major issue, and our focus for today. 
Lily's lungs are still full of fluid so she will need to get out of bed soon! 
Prayers for protection from pain would be great.

Sunday, December 16, 2012

Magic Hairbows

Out of bed, but not thrilled about it. 
However, she was very interested in the hair bow 
on top of this beautiful present from her friend Daisy!

Lily loves hairbows...
they hold magical healing properties for her.

Wagon Ride of Torture

Rough morning for Lily Grace. After her chest X-ray, it was discovered that Lily's right lung is getting progressively worse. It is now partially collapsed and still full of fluid. Our sweet girl is also painfully coughing up lots of blood. We tried to get her in a wagon since sitting up should help open her lung, but just the act of raising her bed necessitated two doses of dilaudud, and a dose of toradol....enough medicine to knock two grown men flat on their backs. Lily is resting now, but in a couple of hours she will be forced to get in that wagon. Please pray for her pain to be managed, and for mommy to keep it together. 

A wagon ride should never feel like torture to a child...this is just wrong!

Saturday, December 15, 2012

Lung Trouble

I know you have all been waiting patiently for an update, but Lily has been in so much pain that we haven't been able to leave her side. Lily has developed several pockets of air outside of her lungs along with lots of fluid inside. The two chest tubes she has are not working to release the air. They have put her on high flow oxygen to try to dissipate the air...if the air is not gone in a few hours, they will need to sedate her to insert another tube in her chest to drain the air. Our little princess is also full of fluid again due to the fluid boluses they gave her to save her life yesterday post-op. 

Please pray for peace and comfort...

Friday, December 14, 2012

Post-Op Difficlutlies

Sweet baby girl has had a very rough few hours post-op. Her blood pressure was too low, her heart rate was too high, she is in and out of JET (bad rhythm), and she spiked a fever. Suffice to say that the empress has kept the doctors and nurses on their toes. I guess she didn't like all the attention the First Lady was getting all day, and so she decided to put on her own show! We got the picture Lily...

Lily's 4th Open Heart Surgery

Lily has been held captive in the hospital for the past three weeks with pleural effusions (fluid in her lungs).  The hospital wifi has not been working, and therefore our blog has been severely neglected. 

Lily is currently in the operating room under the skilled hands of Dr. Jonas, undergoing her fourth open heart surgery.  Today, Dr. Jonas will attempt to use donor tissue to attach Lily's right pulmonary artery to her Fontan (the gortex tube that was placed in her chest in July to re-route her blood flow).  Unfortunately, donor tissue likes to be attached to human tissue, not gortex.  The surgery team is giving this surgery a 20% chance of working, and even if it does work, it will only last for 1-2 years maximum.  Lily needs a God-sized miracle in order to get her right lung to properly function again.

As it turns out, Lily, Jacques and I all have the same blood type...B+.  Because I am pregnant, I was not allowed to donate my blood...no matter how convincing my pleas may have been!  The awesome news is that Jacques was able to donate his blood to be used during Lily's surgery.  Very soon, Lily will have her Papa's blood coursing through her veins!  I get chills every time I think of this beautiful symbolism.

The hours, days, weeks, and months following this surgery hold a lot of unknowns for our little empress.  I will try to keep the blog updated as best as I can, since I know she has prayer warriors around the world who are storming the gates of heaven on Lily's behalf. 

Lily in the surgery prep room this morning...
being a rock star as usual, even though she clearly knew
what was about to happen.  Sooooo brave!

What's been amazing to us throughout all of this, 
is that although Lily is going through intense heart surgeries, 
she is doing work on the hearts of everyone who meets her!

Blessed are the pure in heart, for they will see God. Mathew 5:8