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.