Wednesday, February 26, 2014

Day 26 - Lizzie


I am honored to share Lizzie’s story but I must say I’m having a difficult time putting an account into words that will adequately give people even the smallest glimpse into what an unbelievable child she is.  I suppose I will start at the beginning and try not to make this too long.  I’m afraid that probably won’t happen. 

On February 24, 2013, I was home from church with my son Luke who was sick with an ear infection.  Oddly, my dear friend Erica Hammond was also at home with an ear infection several hundred miles away in Alabama.  Erica had been and continues to be an inspiration and an amazing source of encouragement throughout our adoption process and way before dating back to our college days.  We happened to check in with each other that morning.  I had determined not to look at any of the waiting children’s lists, wanting to be matched with just the right child God had designed for our family.  Erica knew this, she was also one of the few who knew exactly what limitations we set for our future daughter, she knew we were only willing to accept minor/correctible special needs (cleft lip, minor cardiac issues, and the like), and in spite of all this she knew there was something greater in store for our family. 

She told me to look at a little girl called “Cullen” on one of the waiting lists. I said “nah”, and tried to carry on our conversation and switch the focus to her sweet Yuan Yuan, the precious gift she was waiting for.  Didn’t work.  The Lord had already used my friend to plant the seed.  So as we talked I snuck a peak at “Cullen”.  I did not hear anything else Erica was saying.  I proceeded to email a request for her file.  Can’t really say I can remember any thought process, it all sort of just happened.  Thinking I would hear back later on Monday, I was stunned when I received a copy of her file within minutes.  It was Sunday morning for heaven sake.  I squealed when the file came in to my inbox, I had already confessed to Erica what I had done, so she squealed too.  I then let her go so I could look over it. 


Terrified doesn’t begin to cover it.  This child had a multitude of untreated heart defects, severe developmental delays and the file was over a year old. There was no way of really knowing what we were dealing with. Cullen was older than we were asking for and much sicker than we thought we could handle.  So many people had passed her file over.  But then there was her picture, with her big bright eyes. Josh came in from church with the other boys; he looked at me and could tell I had been up to something.  I pointed to the computer.  Could this be our Susan Elizabeth?  There was excitement in the air, though nobody really knew she was the one.  Actually, I take that back, deep down I know we knew. 

We went through all the hoops, dotted all our i’s, crossed all our t’s, sent her file to every physician I knew.  The answers all came back with a similar response, “this is a very sick little girl” or “there are too many unknowns” or “she will require too much of your time”.  On the last day of the 2 week period, we had to make a decision.  We spent every moment praying for the ability and strength to say yes or the courage and ability to say no.  We had a conference call with an international adoption doctor, she basically told us Cullen was not a good match, she was beyond our help.  With every delay or issue she pointed out I wanted to yell “shut up!”  We got off the phone and Josh said, “this does not change things for me, I want to proceed but don’t want to force you into something you don’t think we can handle.” He heard my tears and was willing to accept what ever I decided.  He didn’t realize that I had left the final decision up to him.  With him on board I knew exactly what God wanted us to do.  I told Josh “I am not crying because of what she said, I am crying because we can’t get to her fast enough.”  And with that, we sealed the deal; we had a face for our Susan Elizabeth.


From there we went through the monotonous adoption process.  I became friends with people along the way with similar timelines who I now consider sisters. We did a few fundraisers and started a virtual run for our girl, the support we received from family, friends, and strangers still amazes and humbles me!  We learned her oxygen saturation was in the 60% range, on a good day.  She had multiple VSDs, transposition of the great arteries, severe pulmonary stenosis, and the slight possibility of her having double outlet right ventricle, as well as associated minor pulmonary hypertension issues associated with all the above. She was also not walking, eating, or doing much of anything a 2 year old child does. We managed to get a medical expedite for our daughter. Then we were informed about 3 weeks from our travel time that Lizzie would not be able to fly commercially.  What?!?  Panic set in.  But even that detail was taken care of, Susan Elizabeth’s cardiologist knew a thing or two about flying sick babies out of foreign countries.  So off we went with one-way tickets to Hong Kong.  Sounds like a bad movie title, doesn’t it?  The medical flight was still in the works and we left prepared to be gone weeks.

We took a train into China, and got ready to meet our little girl face to face.  I hate to sound cliché, but the second we met eyes I was a goner.  The same intense and amazing attachment I had with my biological children occurred when I was handed a frail, blue, 14 pound, 30 month old little girl.  And there simply are no words for what transpired between father and daughter.  From that moment on we never questioned if we had done the right thing.  We went through all the same rigamaroo all the other adopting families go through, though at the medical appointment the doctors and nurses could not believe she had not come straight from a hospital.  They were not happy with her condition.  Not only was she blue, she was severely malnourished.  Thankfully we got through all of that and were cleared to bring Susan Elizabeth home.  During this time we were also informed to pick only one short and sweet name for her, at least until she learned her new name.  This is why “Lizzie” has predominately been the name of choice. 


We got home after taking the long way back and quickly fell into being a family of 6.  The boys adored their little sister and she stepped up like she had been in command of them all along.  She met her cardiac team and several meetings were held to determine just what type of surgery she would need.  It was also determined she did indeed have the double outlet right ventricle issues we were concerned of and her ventricular septal defects were also severe and very large.  In the end the Rastelli was decided upon and the choice to have her surgery here in San Antonio was made.  Other than not being able to eat from anything but a bottle, the rest of her systems looked good.  Her lungs appeared surprisingly strong considering and neurologically she was ok.  Her delays only seemed to stem from a lack of exposure and interaction.  Day by day Lizzie grew and blossomed.  She started walking and saying “momma”.  We learned she loves music, laughter, Cinderella, and Mary Poppins.  She also likes pretty clothes, hairbows, and shoes.  Did I mention she LOVES her daddy?


Lizzie’s surgery took place on September 17, 2013.   We had a scare in the beginning when they thought the VSD closure wasn’t going to happen, we were warned of the possibility of a single ventricle repair.  Things were worse than what they expected once they got in.   Somehow they were able to do it and were pleased with the results.  All of Lizzie’s numbers looked perfect.  She was extubated the next day, she was happy but groggy.  All was going well…


It took awhile to figure out things weren’t good because she was such a fighter.  I knew something was wrong after the first day off the ventilator but couldn’t quite make the medical team grasp my “something’s just not right but I only know because I’m her momma” urgency (that and I am also a PICU nurse, several years out of practice, but some things you just know).  All her numbers still looked “ok” she kept fighting but she was not my Lizzie.  That night I struggled to keep her post surgery O2 sats above 85% while everyone was busy with the patient next door who was crashing.  The next day she stopped responding, she stopped breathing, she went into respiratory failure and was eventually reintubated.  Her lungs completely shut down.  The new blood flow was simply more than her little body could handle.  Though it did not present in the typical fashion, Lizzie was suffering from what is known as a reperfusion injury.  Her lungs filled with fluid, collapsed, and she was unable to get rid of the CO2 building in her blood stream. 


The very next day she was placed on an oscillator, which is a type of breathing machine that actually stops the patient from inhalation and exhalation.  It keeps the lungs inflated while it shakes from the inside promoting gas exchange. The oscillator is only used on the sickest of the sick and there is a lot of risk involved.  It was the most unsettling thing I have ever seen, though it was better than seeing her struggle.  Lizzie was given a paralytic and did not actually breath for 6 days. I have never felt so utterly helpless in all my life.  Complete surrender.


Over the next several weeks for every one inch forward Lizzie was slammed with at least a yard of setbacks. She endured hundreds of xrays, multiple chest tubes, labs, CT scans, failed attempts to come off the ventilator, unexplained fevers, terrible intestinal infections, random viruses, major withdrawals, constant vomiting, multiple line placements, moving hospitals, continuing failing lungs, and a worsening heart.  Almost everything was unexplained.  Everything was good with Lizzie until it wasn’t.  In all things.  Her labs looked good until they didn’t.  Her echocardiograms and her pulmonary hypertension all looked ok, until they weren’t.  Her oxygen saturation was great until it wasn’t.  She breathed fine on the nasal cannula until she couldn’t.  No real warnings from Lizzie until she just gave out.  Every time.  Our favorite anesthesiologist dubbed her “Murphy’s baby”.  Whenever a new doctor/specialist came in and they would say “such and such never happens, but it is a risk we have to warn you about…” Everyone within hearing distance would gasp and cross themselves.  Never say never to Lizzie.  She is no text book child.  


Towards the end of November the decision to cath Lizzie and do a bronchoscopy was finally made.  We needed answers.  The bronchoscopy was done first, the pulmonologist came out with some good news/bad news.  Lizzie had two right lungs, meaning her left lung had three lobes.  The normal left lung has only 2 lobes and is smaller allowing room for the heart.  They also found Lizzie had bronchomalacia leading into her left lung, meaning her left airway was completely blocked/collapsed. This completely made sense now.  It explained why she did well with the bipap mask because the pressures it provided inflated her airway for her.  When on just the nasal cannula her right lung was doing all the work, she was ok for a little bit but then she pooped out.  An answer.  We were told to anticipate Lizzie needing to wear the bipap mask for 1-2 years until her lungs strengthened.  Then came the cardiac cath.  Though the previous echos did not indicate such a severe problem, they found the VSD repair had completely opened up amongst other things. Everything needed to be redone.  Her heart was enlarged (which we somewhat knew already), adding to the bronchomalacia issues.  Her heart was adding pressure to her left lung.  None of this was great news, but we had another answer.  Finally.  And that felt better than none.  Oh, and because of the upcoming surgery we then realized she needed, they went ahead an inserted another PICC line (the others had been removed because of fevers, infections, etc).


So we prepared for surgery on the Tuesday before Thanksgiving, then the Friday after, then the next week… But then came the rhinovirus.  Then more unexplained fevers. And swelling.  Aaaahhh!  She was getting sicker and sicker and there was nothing to do. Her heart was getting weaker but she wasn’t healthy enough for surgery.  I would come home and look in her closet and see the clothes she would never get to wear.  The chance of being home for Christmas was gone.  I switched her wardrobe out for fall/winter clothes anyway.  I tried to come home and pretend I was ok so my boys could be ok.  But we weren’t.  Nothing was ok.  To watch your child dying, and that was what was happening over and over, is a feeling I never want to go through again.  Just when we thought things were better… BAM! Every. Single. Time. Then one morning Lizzie woke up and was swollen beyond recognition.  An ultrasound was ordered of her right arm where that PICC line had been placed.  It was in an artery rather than a vein. What?!  Because of her extremely complicated anatomy and her two vena cavas, apparently on xray it looked to be in the correct spot and was cleared for use by several people.  This was the only time I felt the ball had been dropped in the course of Lizzie’s care.  I was angry.  But God used this to teach me.  And He used this situation to show His power and protection to group of people who often rely on science for answers.


So, with all that behind us, surgery was scheduled for December 16th.  And everything went as perfect as it could!  Praise the Lord!  There was an immediate change in our girl!  December came and went and plans for her discharge were in the works.  Because her inability to eat the old fashion way (can you believe after months of being in the hospital and intubations she never took the time to learn how to chew and swallow), a plan for a g-tube placement was made.  GI surgery was set, and true to Lizzie fashion, it was cancelled due to some random virus and scheduling error.  Finally it was placed and another bronchoscopy was performed. After her heart was repaired, it was no longer enlarged, and some room opened up allowing for her lung to expand and her airway to open partially.  Woohoo!  Lizzie would be able to exercise her lungs with periods of time off the bipap!


Could it be truly possible, was bringing Lizzie home really going to happen?  We were in the home stretch!  Then guess who decided to run a fever? Then start coughing? Then start vomiting?  Guess who ended up with influenza A?  Guess who had a flu shot and got it any way?  That would be our girl.  The thought of spending another 2 weeks in the hospital was enough to do us all in.  Her room was set up, there were arrangements for homehealth nursing already made.  We just needed Lizzie to catch a break, or rather, to not catch anything else.  The decision was made after another 5 days of close observation to try to send her home anyway.  She was stable from an ICU standpoint, even with her flu symptoms. It was literally a game time decision.  We woke up the morning of January 20, 2014 still uncertain we would be leaving the PICU, Lizzie’s home for the past 18 weeks.  After spending every holiday from Columbus Day to Martin Luther King Day (including her 3rd birthday) in the hospital, Lizzie was going home!  She could throw-up there (but I really  wish she’d stop it already).


Our days and nights are filled with constant care for our precious daughter.  It has not been the homecoming we expected and it certainly isn’t what we pictured this time last year when we first saw her sweet little face. When we started the adoption process nearly 2 years ago, all I wanted was a baby girl.  I knew not to expect perfection, or did I?  I envisioned pink nurseries and pretty dresses.  A little girl that would make her daddy have tea parties and her big brothers watch princess movies.  We expected sniffles and fits. Maybe a small surgery to fix what needed fixing.  Little did we know, our hearts were what needed fixing.  Y’all, if I could take away the pain Lizzie went through and the hardships she faces I would; but otherwise I would not change a thing.  We are different now.  To have answered the call to be the parents to such an amazing little girl is humbling.  To see so many lives touched by her story is awesome.  To know that God has something incredible in store for a child that was once written off as helpless is beyond exciting. To be used to promote the beauty of adoption and ultimately Christ’s love for us all is indescribable.   


Lizzie has been home now for exactly a month.  As we were getting her ready for bed the other night, Josh was rocking her as she had a breathing treatment.  He looked at me and said “you know, she’s still on all these machines, and this isn’t what we were expecting… But look how happy she is.  This is good.”  I couldn’t have said it better.  This is good.  And yes, there is a pink nursery, there are princess movies, and pretty dresses.  There are even sniffles and fits.  And so much more, including tea parties to come, I am certain!  Please do not let the fear of the unknown keep you from saying yes to a child who needs your love.  Do not set limitations when following God’s calling.  He will never leave nor forsake you.  That is a promise.



I am sorry to have made this so long, it is all too fresh to condense just yet. Writing this has been somewhat of a release for me, what amazing things she has overcome! If by some chance I still have your attention and you want to follow Lizzie’s journey further, please visit www.iwillruntoyou.com.  To those who have been with us from the beginning, thank you. 



2 comments:

LisaE. said...

I had never heard the beginning of Lizzie's story. Tears in my eye from the beauty of it all. Love that sweet little face. She always makes me smile. Praises for changed hearts and the beautiful souls that these little ones are.

Drea said...

It has been wonderful watching her bloom!

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