Monday, August 25, 2014

Roller Coaster

All the time, we hear people use a Roller Coaster as a metaphor. 

"Will I ever get off this roller coaster?"
"My life is such a roller coaster." 
"I'm a roller coaster of emotions." 

And we're just expected to nod our heads and understand what they mean by this metaphor.  They don't explain.  They don't go further.  It's just a roller coaster. 

Friends, this HLHS battle is a roller coaster.  A big, scary roller coaster. 

We waited in line for what seemed like forever.  Finding out at 24 weeks that our child would be born with HLHS was not easy.  That left us 15 weeks of anticipation.  15 weeks to ask the "what ifs" and the "why mes".  15 weeks to wonder and 15 weeks of knowing there was nothing we could do about our situation except prepare ourselves to face it.  

After waiting impatiently in line... anxious with anticipation, we finally made it.  It was our turn.  I don't know about you, but when I get settled into my seat on a roller coaster, I go from excited anticipation to fear!  What if we go off the rails?  What if my seat belt malfunctions?  What if I blow chunks all over the people behind me?  On the day of our induction, I had a million thoughts running through my mind.  Not particularly good ones.  I was fearful.  I was scared of experiencing labor for the first time.  I was scared I would not get to see my baby before they took her to the NICU.  I was scared that her fragile body wouldn't endure the stress of labor.  Suddenly, I wasn't so ready for this ride to start.  I wanted to turn back, but knowing I couldn't, I fastened my seatbelt, said a little prayer and waited for the wild ride to start. 

And so began the ups and downs, the twists and turns, the changes in speed.  Sometimes it felt like things were happening too fast, while other times dragged by so slowly.  In the morning we'd celebrate great milestones, only to cry over setbacks later that evening.  And occasionally we'd round a sharp corner to an unexpected surprise.  Making it through surgery is not the hardest part of the HLHS journey.  It's everything that comes after.  It's the constant adjustment of the countless medications that keep her heart, lungs, and tiny little body operating as it should (under the circumstances).  It's going on the vent, off the vent, on the vent, off the vent, onto vapotherm, off the vapotherm, room air to 50% oxygen, 38 breaths a minute to 14, she's too tachypneic, she's not breathing enough.   It's the frustration of knowing why my daughter is crying and wanting so badly to help her, but having to wait for a nurse to do it.  It's forcing myself to wake up on time for rounds so I can hear all the doctors spout out all the numbers that I don't understand but refuse to miss.  This journey is HARD and, like a roller coaster, you're not sure what's coming until you're headed up the hill, flying down it, or winding a sharp turn. 

But as the roller coaster comes to an end, and you have a minute to catch your breath, you smile.  When I look over at my sweet girl, swinging away in her mamaroo, snoozing just as cozy as can be, with no oxygen in her nose, and no feeding tube down her throat, I smile.  We have seen highs and lows.  We have survived twists and turns.  We may be a little worse for the wear, sore backs, wind-blown hair, a little dizzy, but that roller coaster was so worth it!  The fear, the anticipation, the constant unknown, it is ALL worth it!  I'm not hurrying to get back in line for this one, but I'm sure glad I took the ride.  

I know that our journey is not over.  We will board many other roller coasters over the next days, months, and years.  We will see many hills and turns in our lifetime.  And they will all be worth it.  My daughter is absolutely perfect.  I would not change one single thing about her or our journey.  Not one single thing. 

Wednesday, August 13, 2014

Hospital Living with the Bravest Girl Ever

Since we last "spoke" I had a baby! A beautiful, sassy, perfect baby!  

Sawyer spent 1 week in the NICU with the world's most fabulous nurses.  Then she had her first open heart surgery. 

We have since been in the CVICU being taken care of by some more seriously fabulous nurses!  She is doing well all things considered.  This surgery is no small potatoes -- it's a huge deal.  Open heart surgery on a 7 day old is pretty serious business and the recovery will be a long process with many ups and downs along the way.  Don't ask if she's "on course" or if she's "doing as well as expected".  There are no answers for those questions.  HLHS is a beast of a heart defect.  It presents itself in many different ways and each child and family walks a different path when it comes to treatment and recovery.  There's no predicting who will do well and who will struggle.  There's no predicting how well Sawyer will do from one day to the next... or even from one hour to the next.  We live minute by minute here, and while it's scary and frustrating at times, we also get to celebrate a lot.  

Sawyer has been in the hospital almost 2 weeks. Today is day 13 of hospital living.  When she grows older, she won't remember any of this, thank goodness.  We, however, most definitely will!  

We will remember the nurses fondly -- particularly Nurse Phyllis.  Nurse Phyllis is a NICU nurse at Riley who allowed Patrick and I to be parents instead of bystanders.  It may seem small to the parents of healthy children, but Nurse Phyllis always let us feed our child, let us change her, gave us opportunities to snuggle her.  Nurse Phyllis let us love on our daughter and we will be forever grateful for that.  Nurse Phyllis also did her fair share of loving.  When we were out for lunch one day, we returned to find Sawyer snuggling a little teddy bear, with a sweet little bow on her head.  We looked up to find a painting of flowers made with little Sawyer footprints.  I take Sawyer's teddy with me everywhere.  I held it through her whole surgery. The flower painting will decorate her nursery.  Nurse Phyllis gave us memories to cherish. 

We will remember the cramped living quarters and forever appreciate our king-sized bed.  Making your life fit into a little nook is no easy task, but we make it work.  Care for a tour?

Here is our nook.  I literally spend all day here.  Pat sleeps on that blue "futon" and I sleep on that lovely green recliner then proceed to spend the rest of my day there twiddling my thumbs and watching HGTV.

Here is our storage.  Our mini fridge is filled with Pat's Coca-Cola because "You can't get a coke for a square mile" and the closet houses all of our stuff and our snacky snacks because "There are no candy bars here!" (complaints from pat on hospital living day TWO!)

This is a view from the front of the room.  We are SO SO SO grateful for private rooms.  It just gets a little snug.  You can see Sawyer's little hangout on the left side.  

We will remember the noise.  The constant rhythm of her heart rate over the monitors. (How will I know if her heart rate is good at home?!  How will I function without the beep?!).  The bing bongs of her oxygen monitor when she is breathing too slow or too fast or there's water in her vent.  The quiet hum of all the equipment running around her.  The click clack of the nurses typing out their charts.  The footsteps of nurses, doctors, and respiratory therapists entering and exiting the room at all hours in their clunky hospital black shoes.  Will we ever be able to sleep in silence again?  I think now I will need the noise.  

But above all, we will remember how brave our little girl was through this whole ordeal.  We will remember how her strength left us at a loss for words.  We will remember how this tiny, sweet baby was born fighting and how she never gave up... how she gave us the strength we needed to fight.  I don't know how much longer we will be "hospital living" but as long as I get to look over and see my girl -- it doesn't matter where we are.  We can't wait to get her home, but when it comes down to it, home is wherever she is.

Please continue to pray. We have a long road ahead of us!