Once Upon A Prayer

Sunday, September 23, 2012

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

Wednesday, September 12, 2012

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...

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

Tuesday, September 4, 2012

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...


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."