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!

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...

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

Ifectious Disease

For those of you that know me well, already know that I hate germs.  Particularly those associated with stomach "bugs".  However, the mere thought of any kind of germ on one of my babies is enough to make my skin crawl.  Our family does a lot of hand washing, sanitizing, and avoiding places where germs breed (like toys at the pediatrician's office...yes, I am THAT mean mom who won't let my kids touch the toys).

So you can only imagine how thrilled I am that Mackenzie has a whole team of Infectious Disease doctors working on her case...bleh!  That just sounds so gross!  During Mackenzie's surgery the surgeon took various cultures of the bacteria in her ear.  The bacteria cultures grew, and they determined that she still has the three resistant strains of bacteria that she came home from China with along with a couple new "super" bugs that have mutated and made themselves even more difficult to kill.

The ID team talked to Jacques and I yesterday at length, and they are currently doing tests on Mackenzie's bacteria to see what antibiotics will be effective at getting rid of her nasty infection.   We should have more answers by Saturday or Sunday.  Until then, Mackenzie will stay in the hospital and receive IV antibiotics (Zosyn) every four hours.  This antibiotic is very hard on the veins, so Mighty Mack had to get a new IV started this morning.  It took five different nurses attempting for an hour and a half before they finally got it.  Oh my heart!

Immediately following the screaming and crying...pure joy!

The tentative thought is that Mackenzie will be sedated this weekend to have a central line placed.  Mommy and Papa will be taught how to care for the PICC line at home.  Mackenzie will be put on a 3-4 week course of IV antibiotics along with a couple oral ones as well.  I worry about what this will do to her little system, as she is already experiencing extreme tummy troubles.  I requested that they start a probiotic, and I will venture out to find some yogurt today at some point.

As I watch my beautiful, happy daughter who always has a smile on her face, my mind wanders back to the terrified little girl with a vacant stare in her eyes that I met only 5 months ago. 

A teeny tiny peanut at only 18 lbs and 32" at 3 years old. 

A child thrown away, and held captive in her crib.

With legs severely riddled with Rickets,

completely deformed and unable to hold her weight.

A child I was told by the orphanage could not speak,

feed herself, and had a 104.5 degree fever.

A child only weeks away from death,

with an infection racing toward her brain.

So many concerned friends and strangers have been so worried about our family.  We love each and every one of you for caring so much!  But rest assured that we are GREAT!  We have the enormous honor of having a front row seat to one of the greatest transformations you could possibly imagine.  

A life renewed...

Mackenzie is now a child who knows 

the love of a Papa and Mommy!

Her vacant stare is gone,

and is replaced by a sparkling smile.

She has gained 6 1/2 lbs and grew 2 inches.

Mackenzie talks, and often will not stop.

She runs, and plays, and is absolutely

full of joy!

Our only regret, is that we wished we named her

JOY!

Consider it pure joy, my brothers, 

whenever you face trials of many kinds, 

 because you know that the testing of your faith 

develops perseverance. 

James 1:2-3

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 

Mighty Mack's Emergency Surgery

This weekend Mackenzie started to have some new, severe symptoms due to her Cholesteatoma.  On Saturday, the drainage in her left ear became very bad and changed colors.  By Sunday afternoon, Mackenzie experienced facial paralysis causing her to not be able to smile.  After a trip to see her Neurotologist on Tuesday in his Georgetown office, Mackenzie was admitted to the hospital for emergency surgery.  Not only had the infection in her left ear gotten worse, her right ear was now showing signs of infection too.  Mighty Mack needed to be on IV antibiotics, and have the Cholesteatoma removed before the new infection had a chance to migrate to her brain through her perforated skull.

My Petrified Little Monkey

Papa arrived around 5:30pm much to both our happiness.  

He is the King of making his girls smile - all of us!  

Usually at his expense.

Before heading to the OR, the doctor handed Mackenzie to me.

She clung to me, and I clung to her.

A precious child of God who is so very treasured.
Jacques had to physically pry her out of my arms.

A moment I will never soon forget.

Mackenzie will be checked weekly by the Neurotologist, and then monthly until about 9-12 months after her surgery.  At that point, she will need another surgery to ensure that the Cholesteatoma has not regrown, and an attempt will be made to reconstruct two of her inner ear bones.  Mighty Mack is not out of the woods yet.  Her Cholesteatoma was massive and filled with resistant bacteria.    Since it perforated her skull, the surgeon had to patch several areas of her skull to prevent the spread of infection to her brain.  She has been on IV antibiotics for two days now, and in the morning the Infectious Disease doctors will hopefully know which antibiotic she will remain on for her specific bacteria.  Of course we are praying that it will be an oral one so we can go home!

Speak up for those who cannot speak for themselves; 

ensure justice for those being crushed. 

Yes, speak for the poor and helpless, and see that they get justice. 


Proverbs 31:8-9