Still on that Roller Coaster...

Wow, it's been nearly a month since we last blogged.  I guess that's what happens when you get home with your baby and suddenly you're parents -- like, real parents.  Between feedings, changings, and playtime... there isn't as much time for blogging, hobbies, or general hygiene ;) 

I wrote about how this journey is very much like a roller coaster and that certainly holds true.  We were discharged from the hospital September 2nd and have already been back twice... once for an extended stay and a cath lab procedure.  It's scary how quickly things can change for these kids.  One day Sawyer's O2 saturations were in the 80s... the next day low 70's... then the day after that we were headed to the emergency room for sats in the 60's.  We are so very fortunate to live close to our hospital and to be in a hospital that's filled with truly AMAZING doctors and nurses.  I know for them it's a job, but I wonder if they know how many people consider them family?  Do these nurses realize how we trust them with our most precious gifts when trust is so hard for us?  Do these doctors realize that we sing their praises every day... even when we're resting comfortably at home?  We sure do hate going back to the hospital, but how wonderful that, when we do, it's like going to see family. 

I have to admit I've been staring blankly at the screen for about 5 minutes trying to think of something to write.  We've truly just been living life like any other family does.  Granted, we don't get out much.  We don't take her to the store or even to the park.  You just can't be too careful with hypoplast kids between their first two surgeries.  Germ free is the way to be.  Catching even a small cold can land these kiddos in the hospital (Just ask us!!! She had a cold when we took her to Emergency).  So we don't really leave the house, but we still live.  We read books and do playtime.  We sing, bounce, and snuggle like other families do.   It all feels so very normal. It's our normal.  Drawing medicine, checking sats, charting her intake and weight gain... it's a special kind of normal. It's easy to look at her and see just a regular baby.  We have to constantly remind ourselves (and others) that she is, indeed, fragile.  Because, honestly, she is the strongest, toughest person I've ever met. 

I suppose the big difference between us and other families is that we're crazy... at least I am.  I'd be lying if I said the last two months have been easy. In the back of my mind, at all times, is the thought that something could go terribly wrong any second.  I'm constantly asking myself, "Does she look puffy?  Has she been peeing as much as she did yesterday? Is her color off? I wonder what her sats are at this very second?  She's grunting... is she in distress?  Why is she so fussy... is it just gas or is her heart failing? She didn't gain weight, SHE HAS TO GAIN WEIGHT."  Then there is the added stress of nobody truly understanding what we've gone through and what we continue to go through.  People will judge us or question our decisions because they don't know what it's like to care for a critically ill child.  They don't know what it's like to watch your child slowly heal from an open heart surgery knowing they will have to go through it all again in just a few months.  They don't know what it's like to be sick with worry before each echo... knowing that something might have changed for the worse.   We've already seen strain on some of our relationships because a lack of empathy and understanding... I'm sure this will continue.  But on the opposite end, we've been blown away by the kindness of many, the outreach and support, the thoughts and prayers.  We are blessed by the love of these friends, family members, and even complete strangers.  Whoever chooses to follow Sawyer's story, whoever chooses to be in her life -- they are so lucky.  She is incredible.  Every day she shows us how strong she is.  But that's not all... she's sweet, too.  And smart.  She has the most precious smile and the FIERCEST cry.  With all this personality, all this spunk, you'd never know she only has half a heart.  And with only half a heart, she has this amazing ability to make others' whole.  She has touched so many people in such amazing ways... and we are so incredibly blessed to call this inspiring, beautiful, and perfect girl our daughter. 

Home is Where the Heart Is

After 7 days of home being the NICU, 19 days of home being the CVICU, and 7 days of home being the Step Down Unit, we have finally made it to our true home... with puppies abound, ferrets resting, an empty refrigerator, and the power to make Sawyer a bottle whenever she wants one!  As I sit on my OWN couch, snuggled up to my sweet puppies, watching Sawyer swing away in her very own Mamaroo, I can't help but feel a sense of normalcy.  This is the first feeling of normalcy I've felt since we found out about Sawyer's heart defect many months ago.  Mind you, normal for us involves multiple medications, pulse ox checks, and charting her intake/output for the day... but it still feels so normal.  We wake up in the middle of the night with our girl like any other parents would.  We console her when she's crying (or at least try our darnedest).  We finally get to put some clothes on this little nugget.  It's nice.  Normal. 

But I also know that beneath the cloak of normalcy, we still have a sick kid.  Our journey with HLHS is not complete, nor will it ever be.  Something could go wrong at a moment's notice, sending us rushing to the Riley Emergency Department. We have to watch her every single cue -- we have to know our child like nobody else in the world could, because tiny, minute changes could mean serious problems.  The time between her first and second surgeries is so crucial.  These kids are super susceptible to illness.  Even a small cold could land her in the hospital, a trip her little heart can not afford to take.  Her body is in a constant balancing act and it's scary.  It's scary to be home.  It's scary that right at this very moment, it's just me, the pups, and the kid.  No nurses, no doctors, no cardios.  It's scary that I rely now on her physical cues to know if she's okay, rather than the constant reassuring beep of monitors.  It's scary that there's no "quick fixes" here like there were at the hospital.  Being home is such a paradox.  On one hand, I wouldn't trade it.  On the other hand, I wish Nurse John was here with us! 

I wish I had something profound to say about being home, but the truth is... it's all just really, strangely normal and I don't know what to make of it yet.  Plus, I have a crying baby and there are no nurses to tend to her... so, with that.... gotta go! :) 

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. 

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!

Twas the Night Before Induction...

..and all through the house...

No, sorry.  This will not rhyme.  I'm good but not that good! ;) 

Well, here we are.  I can't tell you how we got here and I certainly can't tell you how it happened so fast, but here we are.  The night before our induction.  The last night pregnant in our home.  

Sleep now, they say. 

You'll never get to sleep again, they say. 

My question for "they"... How on EARTH is someone supposed to sleep the night before their life changes forever?!??  Is ambien on the approved medication list for pregnancies?  Kidding.  But, seriously.  Tonight I'll lay my head down on my pillow for the last time as just a wife and puppy momma.  The next time I lay my head down on my pillow, I will be a mom, to a real HUMAN.  A tiny, tiny little human.  Not any old human, but one with complex medical needs.  And somehow, I'm supposed to sleep?  

No, instead I'm sure I'll lie awake, mind racing from here to Lord knows where.  In a half awake/half slumber stupor, I'll picture our little girl's face, I'll worry about labor, I'll imagine her first surgery, I'll see myself in waiting rooms, I'll get up to pee (because that happens a lot), I'll look over to see if Patrick is in the same state as I am (he won't be.. he's sane).  But I highly doubt that I'll sleep.  Oh well, there's always tomorrow, right? ;) 

As we prepare for our big life altering moment, I want to ask for some prayers.  Please, first pray for baby Sawyer... that her entrance into this world is one of joy, not fear.  Please pray for her momma and daddy -- for strength and courage through the difficult times ahead.  That we can lean on each other rather than push against one another.  Please pray for her grandparents.  Their skin isn't as tough as ours yet.  Please pray for the doctors and nurses who will care for Sawyer.  That God does His work through their skillful hands.  This is SUCH a big adventure and it's hard to imagine that this time tomorrow, our adventure truly begins.  Thank you SO much for your support along the way.  We hope you're ready to embark on the rest of this journey with us! 

(I think it's about to get a little exciting)

OH!  And for those who have been touched by CHD or touched by our story, please consider supporting the cause by raising awareness and funds for research!  Patrick designed these shirts and I absolutely love them!  The funds raised from these shirts will be donated to The Children's Heart Foundation to support future families affected by CHD and research for a better future for our CHD babies! 

Click the pictures to check out the shirts! 

Phew, that was quick.

In November, when we found out we were having a baby we couldn't wait.  And then time craaawwwllleeed by.  The first 20 weeks were dreadfully slow.  We waited the longest 13 weeks ever to tell anyone.  We waited even longer to tell everyone.  Time. Stood. Still. 

Now, here we are... at 38 weeks... and I'm wondering where the heck did time go?!?! How is it even POSSIBLE that we are one week away from our induction date. 

Yes. One week.  7 days.  168 hours.  

Say what?!????

As we've grown nearer our induction date, we've been hit with lots of 

You must be so excited!!

Are you nervous yet?

I bet you can't wait to see her sweet face. 

Are you ready?

And my response to all of those comments has been something like "lkasjfoiiajef...incomprehensible reply... stumbling and mumbling over my lack of words..lkasjfl..."   I have had a real difficult time putting my feelings into words -- or even making any personal sense of my feelings lately, but with one week left... Patrick and I have decided to try to express how we're feeling.  Here goes. 

From Samantha

One week. One week until we get to meet our little girl.  While most women at this point in their pregnancy are screaming "GET THIS BABY OUT OF ME!" and doing everything in the book to try to induce labor, I'm not. Not me.  No siree!  Everyone keeps asking if we're ready, and I can honestly say I have no idea.  The ONLY real answer I've gotten from any doctor this whole time is that our daughter is safe inside me.  That her heart function would be just fine as long as she remained in the womb.  So to let her out of there... well, sheesh!  That's kinda scary!  How does someone prepare for that?  How is anyone ready to expose their child to danger?  At the same time, I also know that she can't have surgery until we welcome her to this scary world.  And she can't get better without surgery.  It's all part of that "new reality" that we're dealing with.  Up until now, our reality has only been changed by news, by words and pictures.  I've gone to a few thousand extra appointments, I've spent hours of my life reading, I've spoken with doctors.  Soon, though, our reality will change in BIG ways.  It won't just be words and pictures... it will be NICUs, cardiologists, surgeries.  Real stuff.  So, no, I guess I'm not really ready, but at the same time, I am, because the only way to move is forward.  How's that?  Could I make any less sense?  

From Patrick

Only seven more days until I get to meet my daughter! I can't wait! Well as most of you know there are very few things that Sam and I are on the same page about other than post-dinner runs to Dairy Queen.  The way we approached coping with Sawyer is no different. I have always been very good at bottling up emotion and making it through whatever obstacle I was faced with, but the last 7 months has been more than trying when it comes to that strategy. From the time we knew about Sawyer's condition I was very hopeful that she would get better, partly because I was grossly uneducated about her heart and secondly because I didn't want to feel scared and heartbroken. We have had many people tell us that they are praying for us and I believe in the power of prayer, but I think sometimes you know that even though a million people are praying for you, there is a journey you are about to embark on that God has planned. So to come back to the point, I am so excited to have this waiting phase out of the way. I think once Sawyer is here, I will be able to focus on the next diaper to be changed and if she needs a bottle instead of dwelling on the things that she won't be able to do. Sawyer has also inspired me to start a foundation to help other families who are going through the same thing we are, and after she is born I am anxious to start working on building it up! I'm calling it #Heartstrong so if you see me using this hashtag on Facebook or Instagram just know I'm trying to build up some rep! As always we want to thank everyone for their continued support and well wishes. They go a long way!

It's not all rainbows and unicorns.

I try to remain positive.  I really do.  Most of the time, I can look at our journey as a learning experience.  I can see how the heart and spirit of our family is growing each and every day.  I can look at how much Sawyer is loved and supported already and smile.  

There are times, though, when I can't see past my worry or even my resentment. I would be lying if I said this experience hasn't put unexpected stress into our lives -- stress much different than the stress of regular pregnancies.  

The biggest strain I have felt has been the strain on my relationships. There are times where I feel so angry with people who complain about their problems.  To me, their problems seem so small.  Honestly, the next time I see a new mom crying over their baby getting a couple of shots, I might vomit.  Poor baby, they say.  My baby was so tough today... she only cried for 10 minutes.  It shouldn't make me angry, and it's not fair for me to feel that way, but I can't help it.  A couple of shots?!? My baby will never know a life without needles.  My baby will NEVER know what it feels like to be healthy.  I have to constantly remind myself that it's all relative.  A couple of shots really might be a big deal to some families and that's so amazing.  I truly hope they are forever grateful for that and I would NEVER wish our problems on anyone else.  It's just hard for me to stomach sometimes. 

I occasionally find myself feeling completely alone, even when talking with my family and closest friends.  The people who are supposed to understand... they just... don't.  And it's not their fault... it's really not.  They can't possibly know what it's like to be growing something so perfect, but knowing the struggle she will endure.  A struggle that no one should have to endure.  They can't know the worry, the apprehension, the grieving.  I wouldn't expect them to.  They can't know the thousands of places my mind goes at all times.  Doctors, hospitals, medications, NICU, PICU, CVICU, statistics, norwood, glen, fontan, interstage, feeds, tubes, lines... all of this on top of the regular worries of the house, the dogs, dishes, laundry, dinner, finishing the nursery, maintaining our lives.  I find myself feeling so alone when people tell me, "It's all going to be okay" or "Just wait til you get to snuggle your little girl." Even my husband will never fully understand what it's like to be in this situation... to be a heart mom.  It is no picnic.  

What do I do when I start to feel this way?  

Sometimes I sulk. I watch a sad movie, gather up some chocolate, and just sulk. 

Most of the time, though, I try to remind myself that we were chosen for this... that this was no coincidence. It was fate.... destiny.  Nobody knows what causes HLHS.  It was nothing I did... I did everything right and this is still our journey.  Why?  Because we can handle it.  Because even though it's not all rainbows and unicorns, God knew in His heart that we could handle this journey -- a journey that hundreds of thousands of other parents could never endure.  God knew that Sawyer would be born with half a heart, and He had to find a family that could make her feel full.  A family that could give her the life that she deserves, the care that she requires, and the love that would take her half heart and make it whole.  I'm not saying this has been easy.  There hasn't been an easy moment.  When I feel resentment toward others who have it "easy" I just have to remind myself that, though this is hard, the reward is so amazing.  The reward is a greater love and appreciation than most people will ever have the chance to experience.  The reward is in celebrating EVERY second that our miracle lives.  The reward is celebrating EVERY milestone that we were never promised.  The reward is in witnessing the love that people have for Sawyer already, a love that is sure to grow. 

It's not all rainbows and unicorns, but I truly believe that every gray cloud has a silver lining.  And our silver lining is SO worth the clouds.