Tuesday, March 1, 2016

Opportunities To Trust

Paisley's big 'Heart Day' was four months ago. In many ways it feels like it was all some sort of bizarre dream. I often find myself asking, "did that really happen?" ... Then I catch a glimpse of the scar so perfectly engraved down her chest, and I am quickly reminded that Heart Day was anything but a dream.

And suddenly it all feels so very real and confronting and impossible to escape.

While that scar - affectionately known around here as her 'special scar' - continues to show signs of healing, so too have my own scars. Invisible scars, but scars nonetheless. It is impossible, after all, to have your child undergo open heart surgery and not have your own heart ripped out, completely broken, stretched beyond recognition and then put back together again - bigger and stronger and more resilient.

So as I sit here four months out from Heart Day, I have yet to find adequate words to explain the whole experience. And as I sit here four months out from Heart Day, I'm realizing that I probably never will. In fact, after staring blankly at my computer screen for far too long, I have officially deemed it an impossible task to write anything cohesive about this leg of our journey.

Type. Read. Sigh. Delete. Repeat.

It's an odd thing, really, trying to put words around something that just can't be put into words.

So rather than waste my life away staring at a screen trying to muster words that I just don't have, let me share with you something that I do have - memories. Plenty of them. They’re the kind of memories that can never, ever be forgotten because they're not floating in my head where they will get misplaced along with inconsequential details like which floor the CICU was on or the name of the cafe in the hospital lobby that we ordered [carbo-loaded comfort food] from every day. 

No, these memories aren't fighting to survive in the muddle that is my brain - they're tucked deep in my heart ... my soul ... our journey. So while I haven't found words, I have found that my heart still remembers and my soul still walks the journey of Heart Day.

I still feel the nauseating swing of the plane as we took off from home and - 2,000 miles later - touched down on a leg of our miracle journey we never wanted to embark on.

I still hear the uncomfortable silence of the night as I tossed and turned counting down the hours until we had to arrive for her 5:30am check-in.

I still smell that heavy hospital air as we checked in the morning of surgery. It's a smell we have grown all too familiar with over the past three years, but one that still takes our breath away.

I still taste the saltiness of our tears as I kissed her cheeks so long and so hard before watching her get wheeled away.

I still feel the unknown that hung in the private waiting room as the nurse told us all the prep work had been done and the surgeon was beginning his work.

I still feel the incredible support of our family rallied around us - all in our special "Heart Day" shirts. [sidenote: I am beyond thankful we did this surgery in WI - I cannot imagine not having our family around us, especially with the added element of caring for baby sister, Ivory - then, 5 months old]

I still see the smile on the surgeon's face letting us know the surgery went well, and that - after six hours - we could finally exhale.

I still feel that lump in my throat as we saw her for the first time post-surgery, dressed in more tubes and IVs and monitor wires than I'd ever seen her dressed in before (and she's been dressed in a whole lot across her little lifetime!). I wanted so badly to scoop her up and take her place.

I still hear all her incessant monitor beeps that would either put me at ease or leave me scrambling.

I still feel the clutch of her weak hand in mine as I tried to comfort her through all the pains of recovery.

I still see the color show itself again in her pretty, swollen little face after receiving a blood transfusion. For the first time in what felt like forever, we saw a glimpse of our Paisley.

I still feel her unstable legs resting against my hands as she stood for the first time and then wowed us all with a few wobbly steps. About 48 hours later she was dancing down the hallways like she owned the place.

I still hear the team that was huddled around Paisley's bed excitedly tell us, "she can go home today!" 7 days post-surgery.

I still taste that sweet celebratory kiss from my hubby as the team walked away - our girl did it! It's all behind us now!

I still smell the crisp autumn air as we rolled the windows down and drove away from the hospital - our brave girl sleeping in the back seat, surrounded by her collection of "get well" balloons, cards and toys.

I still feel that knot growing in my stomach, knowing something was desperately wrong with her a few days after being discharged.

I still hear her struggling to breathe - breathing has never been an easy task for Paisley, but this was a new type of struggle. I'd never heard this sound. I never want to hear it again.

I still see the devastation on her daddy's face when Paisley's cardiologist told us her heart was swimming in fluid and she needed to be re-admitted and get a chest tube immediately.

I still hear a familiar nurse greet us at the CICU [cardiac intensive care unit] floor with a disappointed, "You're back!" - those are two words you never want to hear after being discharged.

I still see the team putting all those heart stickers and monitor cords back on her weak little body as she laid in my arms, growing wet with my tears. Just days earlier we were beaming watching the team free her of them. How could they be back on again?!

I still hear words like "cardiac arrest" ... "ventilator" ... "organs shutting down" as the doctor explained to us that if she had come in even a day later that would have been our reality. And in the midst of our devastation, I was once again made very aware of God's goodness, grace and protection.

I still see the doctor's concern as he told us the fluid that was found around her heart was chyle - an incredibly rare type of fatty fluid that is extremely hard to get rid of - and warned us that "this will be a long, unpredictable journey." We did our best to prepare ourselves for a very long hospital stay.

I still hear my husband crying at the side of Paisley's bed, face buried in her fuzzy blanket. I pulled up a seat and joined right in. No words exchanged. Just tears. It's moments like these across our miracle journey that continue to grow something inside of us that can't quite be explained. It's a supernatural, out-of-this-world kind of strength that can only take root in the soil of a desperate, end-of-our-rope kind of weakness. To that end, my husband is the strongest man I know. 

I still see the glow of my phone in the back corner of the hospital room as I'd read through so many beautiful comments and prayers going out for our sweet girl on social media. Truly, the outpouring of love and support we felt from so many - including several we have never even met - was overwhelming to us. 

I still see the puzzled look in the doctor's eye when she told us Paisley had a staph infection around her heart. Really?! On top of this all she now has an infection?! A four-week antibiotic course began ... and I began to feel like I was on a course to lose my mind. 

I still feel the fire that was lit in me to fight for her every single day as the different specialists took opposing opinions on the best form of treatment for her - her case was rare and puzzling them all.

I still carry the exhaustion from emotionally draining days and long nights.

I still feel the bitter cold as I'd walk the bridge that connected the hospital to the Ronald McDonald House. We walked that bridge what felt like a million times.

I still hear the doctor telling us her chyle fluid had drained significantly faster than expected. And with that, after nine days, her chest tube was removed and we began to see a light at the end of the tunnel.

I still feel the chill as I walked with the team down to the floor where she was having a PICC line inserted. Although I was a little nervous about the possible risk of a PICC line, we were more excited that it would allow us to bring her home before her antibiotic had run its course. Once the procedure was over, we were trained in how to give her the antibiotic ourselves, and we smiled knowing this would be our ticket home.

I still see the faces of the amazing team that cared so beautifully for our girl and the faces of all the amazing kiddos + parents who we met along the way, either in the hospital or the Ronald McDonald House.

I still hear the team gathered outside Paisley's door, agreeing she could be discharged. And, really, this was probably the first time the whole team agreed on something in regard to her care, as it was all so confusing. Couldn't have thought of a better thing to agree on!

I still hear, "Everything looks great!" at her follow-up cardiologist appointment. 

I still hear, "Everything looks great! You are all clear to head back to California!" at her next follow-up appointment two weeks later. 

I still hear, "Everything looks great!" at her next follow-up appointment in California about six weeks ago.

Since she was just 12 weeks in utero, we have heard nothing but negative reports about Paisley’s heart. To finally hear not just something positive, but "everything looks great!", has been the most surreal experience for us. There are no words to describe how thankful we are, and we anticipate nothing but great reports about her heart across her future follow-ups.

Last but certainly not least, I still remember the first time Paisley walked for about 15 minutes non-stop on a recent family walk. Typically, in the past, she would only last about 5 minutes before getting tired. As David and I strolled along beside her in amazement, I asked, "Paisley, do you have so much energy?" Her response - "Yup! Heart all fixed!" And we all just kept right on walking [with a few tears in mommy and daddy's eyes!] … 

Best. Moment. Ever[!!!].

My heart still remembers it all. And so, so much more not written here.

Although we have more of this miracle journey with our miracle girl to walk out, it is with the biggest sigh of relief and gratitude that I can look back at our freshest set of footprints from the last several months and know one of our biggest hurdles is behind us.

Thank You, God. Thank You.

Out of all the things I have felt and discovered and learned across our miracle journey with Paisley - and particularly across Heart Day - I suppose the greatest word I can can use to describe it all is TRUST. 

So, I will end all this rambling with these words that I wrote after one of those bitterly cold bridge walks from the hospital to the Ronald McDonald House after one our toughest days ... 

Today I was thinking about God and trust and all the things I don't understand ... I don't understand how God can feel so near and yet feel so far all at the same time. How we can feel His Presence like a thick warm blanket while watching the cold reality of our child suffer. How we can rest in the calm of His peace while being shaken by an unrelenting storm. How we can stand securely on His Truth while sinking beneath the weight of our situation. I don't understand how God can feel so near and yet feel so far all at the same time. It's a mystery far beyond my ability to solve. But I've found that in the mystery lies beautiful opportunities to trust. 

So, that's what we are learning to do - trust. And we're not just learning how to trust, but we are learning how to keep trusting ... trusting a God Who is always, always near.

As always, thank you for standing with us on this ever-winding miracle journey! We love that Paisley gets to keep walking with a bit more energy now!
... And here are some more pictures of our Heart Day journey [don't mind all the disheveled, un-showered, puffy-eyed looks that are inevitable with a hospital stay!] ...