Procedure

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 ;-)

A new bow...

Just a few hours later...

still feeling yucky, but smiling at her

new hairbow.

This little empress just blows me away...

Yuck

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!

Sleeping Beauty

Sleep in heavenly peace...

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.

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!

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

 

 

Mighty Mack's Surgery Consultation

This past Friday, I took Mackenzie to the Georgetown University Hospital for her Cholesteatoma surgery consultation.  Mackenzie's ENT referred us to Dr. Kim, even though Dr. Kim typically only agrees to operate on adults.  The difficulty that we discovered while trying to find a surgeon for Mackenzie's surgery is that the Neurotologists who operate on children have never seen a Cholesteatoma as severe as Mackenzie's in a child.  So the choice was up to Jacques and I as to whether we trust a Pediatric Neurotologist who had never operated on a child with such a severe Cholesteatoma, or did we trust a Neurotlogist that had experience with severe Cholesteatomas but did not operate on children.  This proved to be a very difficult decision for us.  One that was bathed in lots of prayer.  I was hoping that during this consultation on Friday, God would make it perfectly clear the direction we should pursue.  And he did! 

Dr. Kim spent an hour and a half showing me diagrams, and Mackenzie's CAT Scan while going into detail about how he would perform the Cholesteatoma surgery.  I told him to please be honest with me about everything, and to not sugar coat anything.  I did really well until he told me that he felt Mackenzie had completely lost all hearing in her left ear already.  Even though it is outside of my typical character to be an eternal optimist, I really felt that he would tell us that he could save some of her hearing in her left ear by reconstructing the broken bones in her inner ear.  Instead, he spoke about how he would more than likely close off Mackenzie's left ear canal to help prevent future Cholesteatomas from forming.  Even with this drastic surgery, the Cholesteatoma could still come back, but this would lessen the likelihood.  Dr. Kim then told us that since Mackenzie has a gaping hole in her right eardrum, she will need a hearing aide.  This did me in...the tears starting flowing, and poor Dr. Kim didn't really know what to do with me.  Poor man!  Depending upon how well Mackenzie does with the hearing aide, he would wait until she is about 7 years old before patching her eardrum.  Right now, the hole in her eardrum is acting like a drain for any future infection she may get.  Since this is Mackenzie's only "partially hearing" ear, we need to try to save it.  Dr. Kim was very honest, and said that he is amazed at how many words Mackenzie has learned over the past four months given her hearing status.  I explained to him how Jacques and I say words over and over again straight into her face so that she can literally feel the words.  He said to keep up whatever we are doing because it is working!

Dr. Kim took some more swabs of Mackenzie's ear to see what type of bacteria is present.  When we first returned from China, we were told that she had three resistant strains of bacteria in her ear and he wants to see if we are still dealing with the same bacteria or if this has changed.  Mackenzie will have a hearing test completed on Thursday, October 4th.  If she can cooperate well enough then she will not need to be sedated.  Dr. Kim is booked for surgeries in October, but said he will work at freeing up some space since Mackenzie needs emergency surgery.  Mackenzie's Cholesteatoma has perforated her skull and the risk of the bacteria spreading to her brain is high.  If Mackenzie develops a high fever she will be hospitalized and the surgery will need to be done immediately.  Besides her horrible balance, which is a result of the cyst being in her middle ear, we have also noticed that Mackenzie has began to drool a lot lately.  Our prayer is that the Cholesteatoma can be removed as soon as possible, and that no permanent neurological damage has occurred.     

Mackenzie and I ended our physically 

and emotionally exhausting day at lunch!

Our church small group met up at a park on Friday evening.  Since Mackenzie has such bad balance, she constantly falls and walks into things.  Friday night was no exception.  Mighty Mack walked into a metal part of the park jungle gym and got a black eye.  If it were up to me, I would bubble wrap her and not allow her to set foot on the ground until after her surgery.  Good thing Mighty Mack has two parents!

The Lord your God is with you, he is mighty to save.
He will take great delight in you, he will quiet you with his love, 

he will rejoice over you with singing.
Zephaniah 3:17

Happy Lily Day To Me!!!

Exactly one year ago today, on my birthday,

my husband Jacques gave me "the gift of life".

In my mind, my birthday will never be about me anymore.

For the rest of my life, I will always think of this day as

Lily Day!

My heart was forever changed on Sunday, August 7th, 2011 when I received a reply to an email I sent to my sweet friend Patty...who was actually a complete stranger at the time.  I saw this precious face below on a China Waiting Child Advocacy website, with a plea that this little girl was considered "terminal" and desperately needed a family to bring her home.  Patty offered to share two cardiologist reports that she had obtained on this child they called "Juliana" with anyone who was seriously interested.

This pint sized angel wrapped her little self so tightly around my heart, that at times it was physically difficult to even breathe.  If you have never adopted a child before, you probably think that I am a nut, but any parent who sees the photo of the child you KNOW God has intended for you, has experienced exactly what I am talking about!  Pure bliss...

Patty and I emailed back and forth over the next few weeks.  After dozens of emails had been exchanged, I no longer considered this woman a stranger.  She was my friend, a prayer warrior, and ultimately the woman who would "deliver" my daughter Lily to me.  You can read about that here.

So the night of August 7th, I asked Jacques to listen to the cardiologist reports on this little girl, who unbeknownst to him, had already stolen my heart.  I don't think that the term "doom and gloom" could even begin to describe the reports that I read aloud.  In no uncertain terms, the cardiologists described how Juliana only had a maximum of two years to live.  Her heart defects were extremely complicated and rare, and they did not feel that she was even a candidate for the third open heart surgery she needed to give her a chance at life.  The first words out of Jacques' mouth when I finished reading were, "How do we bring her home too?"  

I was shocked...

 Stunned. 

Never in a million years did I ever expect Jacques to think it was a good idea to bring home this terminally sick and dying child.  Only God could have orchestrated that moment.

And they all lived happily ever after...

 Not even close!

Jacques and I already had permission to bring home a little girl from Shanghai (Mackenzie Ty) through our adoption agency, and Lily was listed with another agency.  Family after family turned her down after having her medical file evaluated by a cardiologist.  And so she sat, on this other agency's list for a very long time.  At that time, Jacques told me to be patient and wait to see if her family found her.  He didn't want to create any waves, and it was very unlikely that the agency she was listed with would release her back to the Shared List so that our agency could lock her for us.  Our agency was aware of our interest, and our consultant would call once a week to check on Lily's status.  Each week we were told that a family was seriously considering bringing her home.  My heart ached week after week.  I wanted nothing more than to call this little girl my daughter.

Obviously Jacques got the hint, and on September 12th, 2011, the very last birthday gift I opened was a card from Jacques saying that he wanted to “Double our pleasure and double our fun” by bringing home Juliana (Lily) too.  Jacques was on board all along to bring home Lily, but this was his way of saying that he gave me his 100% support to pull out all of the stops and start fighting to bring our daughter home.  

The agency that Lily was listed with got updated photos of her on, you guessed it, September 12th...my birthday.  My day could not have gotten any better after seeing this sweet face:

 

After what could literally be described as the fight for her life...

Lily became our daughter.

Today,  exactly one year later,

I have the absolute honor and pleasure of spending 

the afternoon with my girl.

As you know, Lily has been very cyanotic (blue) 

ever since her open heart surgery.

After a call in to her doctor on Monday with some 

new, alarming concerns,

her cardiologist wanted to see her in the clinic today.

The only thing I want for my birthday this year,

is "the gift of a normal life" for my precious daughter.

Happy Lily Day To Me!!!!!

"Do not store up for yourselves treasures on earth, 

where moth and rust destroy, 

and where thieves break in and steal.

But store up for yourselves treasures in heaven, 

where moth and rust do not destroy, 

and where thieves do not break in and steal."

Mathew 6:19-20

Mackenzie's DIAGNOSIS!

Finally, after 17 agonizing weeks of doctor appointments, Mackenzie has a diagnosis.  It is certainly not easy news to digest, but Jacques and I are both relieved that we can now begin down the journey to healing our Mighty Mack.

Mackenzie has a left ear cholesteatoma.  This occurs as a complication from unsuccessfully treated, or in Mackenzie's case, untreated severe chronic ear infections.  The cholesteatoma in Mackenzie's ear is very infected and filled with old skin cells and other waste material.  Mighty Mack's cyst is massively large, and has already broken down most of her middle ear bones and other structures of the ear, affecting hearing, balance, and possibly function of the facial muscles.

The ENT who has been treating Mackenzie has only done this surgery a few times, and the youngest patient was 7 years old, and not nearly as badly infected as Mackenzie.  Within the next few days we are being referred to Children's Hospital in DC, which just so happens to be where Lily had her open heart surgery a few weeks ago.  As my mom put it, I will definitely "feel at home".

We are asking all of our prayer warriors to storm the gates of heaven for the doctors to have clarity on how to proceed with our little miracle girl who should clearly not be alive today.  The cholesteatoma nearly fills Mackenzie's entire left middle ear and extends through the attic into the mastoid air cells.  The cyst has caused a diffuse loss of bone as well as sclerosis of the inner and outer tables of her skull.  At this point the doctors will decide whether the surgery will be completed by an ENT or a neurosurgeon (or both).

On top of the left ear cholesteatoma, Mackenzie has patchy soft tissue within her right middle ear as well.  So, where do we go from here?  Surgery!

The primary purpose of surgery is to remove the cholesteatoma to eliminate the infection and create a dry ear. A second surgery is sometimes necessary both to ensure that the cholesteatoma is gone as well as to attempt reconstruction of the damaged middle ear bones in an effort to improve hearing.  In cases of severe ear destruction, reconstruction may not be possible.  Reconstruction of the middle ear is not always possible in one operation; therefore, another operation may be performed six to 12 months later. This operation will attempt to restore hearing and, at the same time, allow the surgeon to inspect the middle ear space and mastoid for residual cholesteatoma.

In rare cases of serious infection like Mackenzie's, prolonged hospitalization for antibiotic treatment may be necessary.  Mighty Mack will also need surgeries at some point to repair the holes she has in each eardrum.  From what we gather, it sounds like Mackenzie will be scheduled for multiple surgeries over the next few months to a year.

Go ahead and ask me 

if we would have walked down this adoption journey 

knowing how grueling and arduous it would be 

both emotionally and physically...

ABSOLUTELY!!!

God has never felt closer as he does now.

How, you might wonder?

This is explained in 

Psalm 34:18.

"The Lord is near to the brokenhearted 

and saves the crushed in spirit."

Kisses for Everyone

Imagine that for the first 3 1/2 years of your life
you were told that anyone who cared for you was "mama".

"Mama" changed your diapers.

"Mama" changed your clothes.

"Mama" put you to bed.

"Mama" gave you your bottle.

"Mama" wiped your runny nose.
 

"Mama" picked you up.

"Mama" just so happened to be 6-8 different women 

to our little girl they called "Shu Shu".

What most biological children learn within the first few months of their lives,  adopted children need to be taught. 

Attachment is not easy, and is never guaranteed.  

Complete strangers have made comments to us about how "friendly" and "loving" Mackenzie is to them.  If you have never adopted before, you probably see this as a good thing.  I mean, who wouldn't be thrilled with a precious, sweet, social child?

With this being our first adoption, I freely admit that we thought the authors of the attachment books must be weird, or crazy, or psychotically possessive.  They tell the newly adoptive family to hunker down and isolate themselves from the world.  They cautioned us to not allow anyone outside of our immediate family to hold our girls, change our girls, feed our girls, comfort our girls but us.  They recommended high fives, quick hugs, and "love" from a distance. 

Sounds silly, right?

However, after enduring the sting of a cold shoulder time after time from our precious daughter as she nestled up to someone other than us, we started to wonder if perhaps those authors were right.  When she began reaching for our friends and kissing them on the lips we knew we needed to change our approach to attachment since our method was clearly not working.

Jacques and I so desperately want Mackenzie to understand that:

Papa and Mama kiss boo boos.

Papa and Mama are her biggest cheerleaders.

Papa and Mama will make sure she never goes hungry.

Papa and Mama will keep her clean.

Papa and Mama will make her smile when she is sad.

Papa and Mama are madly in love with her.

Papa and Mama are forever. 

We are not there yet... 

Nowhere close to be exact.  

So for now, we will just hold onto her a little bit tighter, 

and keep her a little closer.

  

We will continue to fight for this precious little girl 

that God has entrusted in our care. 

 

Mighty Mack Attack

Mackenzie is having a CAT scan tomorrow morning in order to see past the infection in her left ear.  We ask you to pray that she can do this without sedation, or else we will need to reschedule her scan for a time when a team of anesthesiologists are available.  We are also praying for answers and hopefully solutions to what can be done to get rid of Mackenzie's inner ear infections that she has had for well over a year.

On Wednesday, Mackenzie will have her appointment with the Geneticist.  Since Mackenzie has multiple birth defects, we will be checking her for various syndromes that can be associated with these birth defects.

Post-op Cardiologist Appointment

Yesterday was the day that Lily had her post-op check up with her Cardiologist in Washington D.C.  Her appointment was at 1pm, and was supposed to only last about an hour.  Lily was VERY excited to be alone with Mommy, and go to the "hosibal".  Mommy was excited to have Lily evaluated, and get to Washington D.C. and out of Washington D.C. before rush hour traffic begins around 3:30pm.

The Cardiologist  looked at all of Lily's vitals, and decided that she needed a full work up in order to get to the bottom of why her oxygen saturations are so low.  The low oxygen saturation causes her to be very blue, and not have enough energy to make it through the day.  So off we went for an EKG, Echocardiogram, bloodwork, and chest X-ray.

This is Lily in the chest X-ray machine

After hours upon hours of testing, the Cardiologist still does not have a clear explanation as to why Lily's oxygen saturation is so low.  She decided to send Lily home on a Holter Heart Monitor  to wear for 24 hours in order to see if Lily is having arrithmiyas that could be causing the low saturations.  

Lily wearing her Holter Monitor "purse"

Needless to say, we arrived home from our appointment around 8pm after sitting in traffic for 2 hours...YUCK!  Lily will wear the heart monitor until 5pm today, and then we will put it in a box and ship it back to the hospital.  We should have the results from the data in about 2 weeks.

We will continue to have a nurse come to our home two times a week to evaluate Lily. 

Next week, Mackenzie is up for appointments!  She will have a CAT scan of her ears on Tuesday, and an appointment with a Geneticist on Wednesday.   As always, we covet your prayers for our family!

Safe In My Arms...

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Abounding In Hope

In typical Rancourt fashion, today was all about dividing and conquering.  This happens frequently when you have two little girls who need to be at two different doctor appointments on the same day.  I volunteered to take Lily back to Washington DC for her post open heart surgery check-up, while Jacques took Mackenzie to her ear appointment.

Let's start with the good news...no, no, no...

make that AMAZING news!!!

The nurse practitioner said that Lily "looks great"!

Her right lung is still partially collapsed.  I didn't think about it at the time since I was so excited to hear the words "Lily" and "great" in the same sentence, but I wonder how long it will take for this lung to mend itself!?  Lily has a little bit of fluid in her left lung, but nothing to be concerned about, and very common after open heart surgery.  Her blood pressure was a little high, which I am not too thrilled about since she is on a medication for her arrithmiyas that lowers blood pressure...hmmmm!  Last but not least, Lily's oxygen is still low...like mid 60's, low 70's.  This explains why our little Empress is very blue a lot.  

A sweet little boy (maybe 4) asked her today at the hospital if she was wearing lipstick.  Lily looked up at me, and I said, "Nope, God just made her extra beautiful don't you think?"   He agreed.  

Lily will return to see her cardiologist on Thursday, August 16th.  Jacques and I have a million questions to ask her, but for now we are content.  Our hearts are overflowing with praise to the One who fearfully and wonderfully made our little girl....inside out and backward!

Sisterly love...

the best medicine money can't buy!

So, what is the bad news you must be asking yourselves?  Yup, you guessed it...Mackenzie's left ear is still showing no signs of improvement.  As a matter of fact, the last time I posted about her ear we were hopeful that the infection was beginning to respond to the treatment.  Unfortunately, this pesky resistant bacteria became resistant to the antibiotics she has been on and now her ear looks just as bad as before.  The doctor gave us a script to take her in to have a CAT scan to get a better look at what is going on.  To say that I am frustrated would be a total understatement.  We have decided that after 11 1/2 weeks of being home with aggressive treatment, it is time for a second opinion.  

I want so badly for our little girl to be able to hear clearly.  I want her to be able to mimic the words we are saying, and be able to express herself to us through verbal language.  Mackenzie has come such a long way over the past couple of months, and she tries so very hard to speak and pronounce things clearly.  She went from saying, "Ma" and "Ga", on Gotcha Day to saying many two to three word phrases.  Jacques, the girls, and I definitely speak, "Mackenzie", although you might struggle if you are not around her a lot.  

Our family is filled with so much hope for both Lily and Mackenzie.  God has shown up in so many big and amazing ways already, and we know that he is not finished with us yet!

 

 May the God of hope

 fill you with all joy and peace in believing, 

so that by the power of the Holy Spirit 

you may abound in hope.  

Romans 15:13

Day 19 - Home Sweet Home

Lily was released from the hospital today!

This day is met with great joy...

PRAISE to God...

and much trepidation!

Lily should be oxygenating in the 90's.

We are lucky to see her in the 70's.

Miss Lily is smiling from ear to ear to be home.

But her lips are so very very blue.

And her little piggies are blue too.

As for tonight, we will celebrate being

H..O...M...E

From the fullness of his grace

we have all received one blessing after another.

John 1:16

Day 18 - Always Wanting More

Let's start off with the good news!

After Lily was on the two "ouchy" IV antibiotics for 48 hours her white blood cell count came back normal, and her fever disappeared.  Yahoo!  The infection is gone.  Lily has also been able to get up and out of bed quite a bit over the past few days, which has kept Mommy very busy.  

Happy...but busy!

Lily was doing so well, that the rumor on the floor was that if she stayed fever free for 12 hours , and stayed off oxygen, she would be able to go home on Sunday.  I thought for sure this was it.  We were finally going home.

Not so fast...

A few hours after Lily fell asleep on Saturday night, her oxygen saturation dropped dangerously low and stayed there.  The nurse and I both sat by her bedside watching the monitor, knowing full well that if she put the oxygen back on Lily, we would not be going home the next morning.  Somewhere around 30 minutes later, the nurse looked at me and said, "I am so sorry.  Lily is not coming out of this desaturation, she needs oxygen".

Sunday morning's x-ray showed fluid in Lily's left lung.  The surgeons decided to watch Lily closely over the next 24 hours to see what would happen.  The next 12 hours showed Lily's heart rate to be very high, and her oxygen saturation to dip quite low with hardly any activity.  Just like the night before, a few hours after Lily fell asleep, her oxygen saturation inched its way down until it hit 54 and stayed there.  The nurse and I propped Lily up on some pillows, and raised her bed quite a bit.  Lily was able to bring up her saturation's on her own to 70 without any oxygen.  Without her being on a monitor, Jacques and I would never have known she needed to be propped and moved in order to breathe.  That really scares me.

Over this past week, I have found myself always wanting more.  We adopted Lily knowing that her life on earth might be short.  The Cardiologists and surgeon gave us hope, but never a guarantee.  We also knew this this third open heart surgery would not "fix" Lily's heart.  This surgery might buy us some time, but then again, it might not.  When I prayed to God for his grace and favor to make Lily our daughter, I promised him that I would love this little girl with all that I had in me even when it hurt.  I would cherish every moment we spent together, and I would make sure she understood that this life on earth is not the end.  

As I watch my precious baby girl sleeping in the bed next to me I am reminded that just eleven weeks ago, Lily was a little orphan girl that the nannies called, "Yar".  She had no hope, no chance at healing, and no future.

Tonight, Lily is our daughter...

a sister...
granddaughter...
niece...
cousin...
friend...

and an inspiration to everyone she meets.

We are troubled on every side, yet not distressed; 

we are perplexed, but not in despair; 

2 Corinthians 4:8

Day 14 - Small World

This morning I took Lily to the toy room to play.  A beautiful Asian girl was sitting at the table drawing a picture next to her mom.  The mom and I began talking and discovered that both of our girls are Inner Mongolian Princesses! 

Can you say goosebumps???

The little girl is named Kathryn, and she is eleven years old.  Two days ago she had her pacemaker replaced, and she looks fantastic.  My eyes welled up with tears the entire time I spoke to her mom.  How awesome is our God?  After hitting a scary road block yesterday, He could not have sent me a sweeter gift than to meet this precious little girl from Lily's China province.  As massive and far reaching as our world seems sometimes, I am absolutely humbled by how God continues to move mountains and send me Godwinks when I need them the most.

"We will not hide these truths from our children, 

we will tell the next generation 

about the glorious deeds of the Lord! 

About his power and his mighty wonders." 

Psalm 78:4

Day 13 - Blessing in Disguise

I don't think I have ever been as happy to see a fever as I was today.

For those of you who know me well, 

you are probably thinking that 2 weeks in the hospital

has completely robbed me of my sanity.

Maybe it has.

 

I absolutely HATE when my girls have a fever.

It makes me nervous, and breaks my heart.

Here's the story:

Lily spiked a fever yesterday.

The nurses put her on Motrin every 4 hours.  The IV Therapy team came in and drew blood to send it off to the lab to see if any bacteria would grow.  They also had Lily do a urine collection.  This morning, the charge nurse was so excited that Lily was no longer  spiking fevers, which seemed strange to me.  Motrin typically does the trick of reducing fevers, and Lily had been on it around the clock!  Regardless, the nurses said that she "looked" great.  One of the difficult things to explain to people is that Lily is often times stoic.  Just because she is not screaming and crying, does not mean that she feels alright.  

So today, the plan was to try Lily on room air again, and if she could maintain her oxygen saturation at 75 or above, they would send her home tomorrow.  Lily fluctuated from 65-82 all day long.  The nurses were pleased with this.

Home?  Really?  

Sounds too good to be true.

This afternoon Lily spiked another high fever.  Thank goodness this happened in the hospital, and not right after we arrived home.  The surgical team decided to start her on a strong antibiotic for the next 48 hours.  Shortly after we were given this news, the charge nurse came in and told us that she had just received a phone call from the lab, and Lily's bloodwork from yesterday was positive for a bacterial infection.  Tomorrow we will find out exactly what type of bacterial infection has grown.  For tonight, Lily will be started on Vancomycin and Zosyn, which are two extremely strong antibiotics.  Lily will receive them both, three times a day, by IV.  Unfortunately, these antibiotics are very hard on the veins, and we have been warned that Lily will probably need several IV changes throughout this treatment.  Lily has been poked all over every square inch of her body that now display huge bruises.  I have no clue where else they can start an IV on my little princess.  Depending upon what type of bacterial infection Lily has, the IV antibiotic treatment will either run 48 hours or for 5-7 days.  Tomorrow we should have a better idea of what lies ahead of Lily.

A few specific prayer requests are that Lily has not drank anything since we arrived on the "floor".  She will eat a few bites of food here and there, but refuses to drink.  Last night they gave her IV fluids because they were afraid that she would become dehydrated.  Also, the antibiotics that Lily will begin are known to cause severe diarrhea.  After everything that Lily has been through, I am really not looking forward to this at all!  And most importantly, an infection after surgery is very serious.  Please be praying that the antibiotics act quickly and effectively at wiping out the infection that is inside of Lily's tiny body.

You may be wondering how Lily is doing tonight?

Well, her fever is down to 101F...

and she requested a wagon ride.

Oh how I LOVE this sweet girl!!!

A tasty treat before her IV antibiotics begin.

And how is Momma doing?

I am praising God for life...Lily's life.

Two weeks ago tomorrow,

Dr. Jonas gave Lily a chance at life.

Instead of focusing on Lily's infection,

my focus tonight is on 

praise.

Praise be to God!

“Why, my soul, are you downcast? 

Why so disturbed within me? Put your hope in God, 

for I will yet praise him, my Savior and my God.” (Psalm 42:11)

Day 13 - From Good to Bad

We started out our morning by busting out of Lily's room with the help of the Physical Therapist.  The nurse practitioner took Lily off of oxygen around 9am to see how she would do (again).  Lily was thrilled to have her "shoesies" on her little feet again. 

And off we went...

 We walked down to the playroom, 

and Lily was definitely excited to see toys!

Cooking breakfast for Momma.

Notice Lily's blue lips...Momma was nervous

but trying not to ruin the fun!

 

 By the time we got back to the room, Lily was exhausted and very dusky.  I placed her back in bed just in time for Papa and Soleil to come for  a visit.  Around 1:30pm, I asked for the nurse to come and check on Lily.  Her heart rate was very high, and her oxygen was in the 60's.  They gave her some Tylenol to see if the increased heart rate was from pain.  They also decided to put her back on oxygen.  Papa and Soleil said goodbye around 2pm.  About 15 minutes later the nurse came in to check on her again, and Lily was still not doing any better and actually seemed to be getting worse. She ran Lily's vitals, and  it turned out that Lily had spiked a fever.  The nurse practitioner called for bloodwork and an urinalysis to be done in order to check for infection.  While we waited for the IV Therapy team to come, Lily screamed, cried, and thrashed for about an hour.  They gave her Oxycodone, Motrin, and cool compresses but the little Empress was absolutely miserable no matter what.  My heart broke for my daughter as my mind wandered back to the cheerful little girl just hours earlier in the playroom who was making me breakfast. 

We spent the rest of the day and night doing "calm" activities.

No easy feat when you are "3".

Lily LOVES to listen to her recorded book

that Mimi and Bucca sent her for her birthday!

 

 Even with the Motrin every four hours, 

Lily is still running a low grade fever.

Hoping and praying that Lily is infection free!!!

Evening and morning and at noon 

will I utter my complaint and moan and sigh, 

and He will hear my voice. 

Psalm 55: 17