Tuesday, February 9, 2016

Day 9 - Mary-Kate Martens

Today is a big day in our family.  This day a year ago marked the beginning of a new chapter in our journey as the parents of a heart baby.  In the few short weeks since we'd brought her home from China, we'd already experienced emergency room trips, an ambulance transfer, a hospital stay, general surgery to remove the majority of her baby teeth and a heart cath.  And then, on February 9th, 2015, we handed her over to a nurse who carried her down the hall to an operating room where she would come close to losing her life before her surgeon even began the repair on her heart. 

A couple of days later I curled up on my bench-turned-bed in Mary-Kate's room in the CVICU to write my last year's post for this blog.  If I knew then what I know now, this is what I'd have to say to myself.

GIRL.  You don't even know.

I mean, I'd read SO many blogs, followed SO many stories, scouring each for details that would help prepare me for what was to come.  I'd researched her heart defect.  I knew to expect complications.  I realized we were in an unpredictable set of circumstances.  I was fully aware that literal heart-stopping moments were possible.  But until I had lived it and breathed it and walked it?  

This time last year, we were three days in to what would turn out to be a very eventful 33-day hospital stay.  I know that pales in comparison to the number of days some of you reading this have spent in the hospital with your own heart warriors.  I am honored to just be among you who fight with all you have for these little ones.  I will say this.  About five minutes of watching your child lying in a bed with lines coming from every direction, pumps and monitors and beeping and nurses and doctors filling the room and being told you have a very, very sick baby is all you need.  Gold card issued.  And then there's watching your child code and be resuscitated.  

I wrote the following words in the early hours of our last day in the hospital.  I never got around to sharing them publicly.  I think now is the perfect time.  Sometimes you have to look back in order to be able to look forward.

March 13.2015: uncharted

We've been here for 33 days.  It isn't the average stay for a heart repair (Tetralogy of Fallot).  It certainly isn't the longest stay.  There are many of you who will read this and think, "Thirty days? Please." And, truth be told, it wasn't entirely unexpected.  Somewhere deep inside I think I knew we'd be here longer than seven to ten.  I think I knew it would be anything but an "average stay". 

  Prior to her code, she did NOT want to be held.  

None of the events of the past four weeks were necessarily on the horizon, however.  While a heart defect as severe as Mary-Kate's often dictates complications, our girl made it clear from the beginning that she was rewriting the textbook for all of us.  No one, our brilliant surgeon included, expected our daughter's heart to be fused to her sternum from her previous surgery in China. No one anticipated three failed extubations.  And absolutely no one saw the "event" coming.  Still, every one of those circumstances was within the realm of expectations. 

Hours after her code, they were warming her body from 91 degrees.

But this last couple of weeks?  This was uncharted territory, especially for me.  Never did I ever see it coming.  After all the tests are said and done, there's no pathology to explain why my daughter can't walk or talk or even sit up.  There's no explanation for the hallucinations or the repetitive actions or loss of a "threat response" or the way she looks right through a person instead of tracking on anything or anyone.  It's a mystery as to why she can't sip out of a straw or why her actions are more instinctive than purposeful. It's a toss up as to whether to call it ICU psychosis or PTSD or stress-induced encephalopathy.  

Several EKGS, an MRI and a lumbar puncture were among tests run after the code.

Whatever you want to call it, it's blindsided me.  All of us, really.  You can see it in the eyes of the doctors and nurses and support staff who have come to care so much for this sweet little baby who was once not so long ago an orphan.  The jokes about her not "reading the textbook" on how this was supposed to go have become not-so-funny references as to how she's rewriting a few chapters. But while it's her story, it's become more and more evident that God is writing every detail, and He isn't done yet.  I'm struggling some days - some hours, even - to trust Him in this, and yet the only thing left to "do" is cling to Him and fall on my knees.

In the last thirty-some days, I've learned a few things.  I've realized that there's a whole population of parents that live at this hospital.  Some are in and out sooner than others.  Some are here for the long haul.  The little red wagons go in and out all day and night, carting dirty laundry and fresh laundry and take-out food and overnight bags.  The parents sit at tables in the Ronald McDonald House, sometimes anxious to chat and sometimes with a vacant stare and tear-stained faces.  I've ridden those green elevators well over a hundred times in the last month, and I'm still uncomfortable when I look at the directory and see "burn unit" or "oncology".  Even on my own floor, I've heard whispers of signing a DNR outside the room of the tiniest most beautiful baby.  Imagine how hard it is to cling to hope for those parents.  

I've come to a new understanding of how hard these experiences are on whole families. I'm sure there will be some reading this who will scoff at a mere 33 days.  I know a family that's been here at Riley for months, with no real end in sight.  I know of some families who've endured surgery after surgery and month after month and setback after setback and traveling far from home and missing birthdays and holidays.  It's hard stuff.  I've only really had a taste of what some have endured.  

What I've also learned is that whether God asks us to do this for a week or for months or for a lifetime, most days all we can do is put one foot in front of the other.  I've been reminded that He gives us light for that step ahead of us, and while we might not be able to see very far ahead or exactly where we're headed, the light is most easily seen when we keep our eyes on Him.  I wrote about being in over my head not so long ago.  I almost want to laugh because, wow, was I still in shallow waters.  It gives new meaning to the fact that a person can drown in just a few inches.  It's definitely deeper out here. And I've most certainly bobbed beneath the surface a few times. 

Dr. Lutfi was just one of several amazing doctors who cared about more than the physical state of her heart. 

Today we head home. Part of me is thrilled beyond reason because I am so ready to be home and to sleep in my bed and to not live hospital life.  Part of me is anxious about the transition back into real life.  Part of me will miss late night walks through the hallways and some of the people who have cared so much for our daughter and our family.  I probably won't miss the constant interruptions and med students waking me from a sound sleep.  Still, I wouldn't trade a minute of it, even the scary ones. 

heading home

How do I even describe what it's like to know that so many people, the majority of whom I've never even met, are praying without ceasing for my daughter?   For our family.  Grateful? Yes.  But that doesn't seem to do it justice.  It's a peace in the face of fear and uncertainty that keeps us going.  And it's exactly what we as Christians are supposed to do for each other.  Thank you's aren't necessary.  It's enough to see the hands and feet of Jesus working together to seek the will of our Father.  Because what's uncharted for us is fully written in His plan.

So here we are a full year later.  Has Mary-Kate made a full recovery?  Physically, for the most part, yes.  Her heart is much healthier, post-repair.  She was discharged with a mild-to-moderate residual VSD.  From her last echo, her cardiologist thinks that might be closing up some, so that's fantastic news!  She still has mild regurgitation from her synthetic pulmonary valve, and they'll watch that until time for it to be replaced.  We pray that is a long time down the road.  Her pulmonary pressures seemed a bit higher at her last appointment, as well, so she is on sildenafil, a medication to help with that.  We're hoping to wean her off of it in the next few months.  She is completely off of lasix and aspirin, though, and we are grateful that has gone well!  She will most likely continue to experience pulmonary issues due to the damage to her lungs, described as "permanently hazy".  

Miss Mary-Kate is just over 20 pounds now, and she's grown over three inches in the last year!  She weighed 17 pounds at adoption and surgery, and a little under 16 pounds when we brought her home from the hospital.  We managed to convince them to take the NG tube out before discharge, and, thankfully, she takes enough formula by mouth to maintain and grow.  She eats solid food, but not a lot and definitely on her terms. 

What we know now, without a doubt, is that the encephalopathy and everything that came with it can be attributed to post-traumatic stress disorder.  And I believe that is where the majority of her story to tell will be written.  I will take the risk of being completely transparent here by saying that the night we brought her home was not the mountaintop experience it should have been.  In fact, it was a deep, dark valley.  I admitted to myself and to my oldest daughter that there was a part of me that feared we had done the wrong thing by putting her through the surgery.  That maybe we just should have loved her through whatever days she'd had left.  Of course, most of me didn't think that.  But I needed to own my fears and give them over to God.

Those first few days at home were hard.  I was alone most of those days with a two-year-old who couldn't sit up, walk, play, feed herself or communicate with me. I didn't know if and when there would be an end.  I clung to hope because it's all I had.  But within a week or so, we saw glimmers of our sweet girl.  And eventually she began to let us back in.  It was, in so many ways, a beautiful but painful process to witness.  I watched her go through behaviors and stages I've seen my biological newborns go through.  I found myself grateful just to be there for her.

the return of her smile

So much of who she is and was has returned to us.  Her speech has not.  It wasn't long before she began using mama and no, but virtually no other sounds, including those she was using prior to surgery.  Just in this last week, we've seen what we consider major progress. In terms of language skills, this means baby babble.  Please know, however, that this does not limit her in getting her point across.  She signs when she feels like it.  She can combine signs and her few sounds into sentences when prompted.  She can follow three-step directions like a boss. And she is quite creative and makes sure we understand what she wants or needs!  Most significantly, we've noticed that if she makes a new sound and we bring attention to it, she cannot, physically and consciously, repeat the sound.

her first steps

 It is abundantly clear that her language is deeply connected to her trauma and her trust.  What is also connected to trauma and trust is her sleep, or lack thereof.  One of my biggest fears going into our surgery and hospital stay related to her sleep issues.  Twenty-seven months after bringing her home, she still has not slept through the night.  We've had nights with the most gut-wrenching of night terrors, but every night she wakes several times to make sure we're there and take a couple of ounces from her bottle.  Her hyper-vigilance is just another manifestation of her trauma. It isn't ideal, and by ideal, I mean some days we are tired and grouchy and worn.  But it's our mission to, first, love her where she is.  It is becoming increasingly apparent that my next mission includes research on PTSD in adoptive, hospitalized and post-surgical children in order to improve the way they are cared for, especially in health care settings. 

taken on her third birthday last week

We heart moms (and dads) all have places where our stories overlap.  And we adoptive moms (and dads) also have places where our stories overlap.  Sometimes, our prayers aren't answered the way we hope they are, and our stories take turns we feared or didn't expect. Yet, because of my faith, I believe that each story is intricately written with details we don't want to overlook.  With facets of His truth and strength that serve to help us know Him more deeply.  With threads that connect us in the telling of His story.  

"For whatever was written in former days was written for our instruction, that through endurance and through the encouragement of the Scriptures we might have hope."

Romans 15:4


Andrea O. said...

Precious, precious child! Thank you for sharing her story with us all!

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