Tuesday, March 31, 2015

Our New Journey

If you've been following our story for a while, you know that we received Sawyer's diagnosis of HLHS at 24 weeks pregnant.  I had a lot of time to Google prepare to be the mommy of an HLHS baby.  I learned everything I possibly could before she arrived and once she was here I continued learning.  I wanted to know all of it.  I needed to know what every number meant, what every acronym stood for, why they changed these settings, what each new med was.  My poor doctors and nurses... I couldn't help it.  I just HAD to know it all.  I immersed myself in it because I was bound and determined to be a good HLHS mommy. And I am.  I really am.  I'm great at being a mommy to an HLHS baby. I know what every number of her blood gas means and what adjustments should be made to normalize the ones that are a bit wonky.  I know lots of other HLHS families, what surgeries their kid has had, which ones have been on ECMO, and who has a surgery coming up.  

Sawyer is 8 months old and she has been through so much... several codes, 2 open heart surgeries, a thoracotomy, 4 cath lab procedures, 2 ECMO runs.  It's been one crazy journey.  And now we're preparing ourselves for a new journey.  I'm preparing myself to be a new kind of mommy. 

A transplant mommy. 

We listed Sawyer for transplant status 1A on March 30th around 2:00 PM.  If you had asked me months ago, where we'd be at 8 months old, I would have told you we were preparing for Sawyer's hemi-fontan, the second stage of her 3 staged surgeries.  I would have been optimistic about a short stay, as the hemi is typically a quick recovery.  I would have told you that Sawyer's quality of life would be so much better after her hemi.  Well, life happened, Sawyer didn't follow the rules, she definitely didn't read the HLHS handbook, and we've landed here.  Listing for transplant is exciting, terrifying, happy, and sad all at the same time.  On one hand, Sawyer will have the opportunity to live her life with 4 WHOLE chambers!  Oh I can't imagine the energy she will have with 4 chambers considering the energy she already has with 2!   She will be PINK.  I won't have a panic attack every time she cries or even poops (seriously... just POOPING plummeted Sawyer's heart rate once).  But on the other hand, she will be on really intense meds for her whole life... meds that can cause other scary conditions... meds that will make her hugely susceptible to illness.  So I may not fear when Sawyer cries too hard, but if someone sneezes across the room... oh Lordy.  

And don't get me started on the fact that you have no idea when the perfect heart will come.  It could come in weeks or it could come in months.  It could come the second I hit publish on this blog post.  How the heck is this OCD, planning, control freak supposed to handle THAT?!?  

This has been an adjustment... one that I haven't even begun to really hash out in my mind.  I have known we COULD go down this road for about a month, but now that it's officially official, I have a chance to let it all soak in.  And you better believe, I will be Googling preparing as best I can... learning everything possible... taking it all in... just as I did when I became an HLHS mommy.

  Transplant mommy. 

I think I can do this. 

Saturday, December 27, 2014

Have you thanked a nurse today?

We have lived in the hospital for 2 and a half months.  People often wonder how we do it... how we manage without going crazy.  This week, with the holidays, I can't tell you how many people have said something to the tune of "I'm so sorry you have to spend Christmas in the hospital."  Well, to be honest, I enjoyed our Christmas in the hospital.  It was festive, joyous, and we had a whole heck of a lot to celebrate.  But you know what made it really special?  The same people who make every day here tolerable... who have this uncanny ability to make an ICU room feel like home... the nurses. 

Now I can't speak for every nurse in the world, but I can say with 100% certainty that the nurses in The Heart Center of Riley Hospital for Children are some of the most amazing people I have ever had the privilege of knowing. 

So to our nurses... thank you. 

Thank you for listening to me,.. when I'm rambling and don't make sense, when I'm overly excited or worked up about something, when I can't seem to find the words to express what I'm feeling.  You are always there to listen and I always feel heard. 

Thank you for understanding my concerns and embracing my crazy.  You have a special ability to talk me down from the ledge which is no easy task.  You know what I'm going to say before I say it (i.e. "So how low are we going to let her sats get before we do something?" and "Are you sure we're okay with that diastolic?")  You know so well that Sawyer's mommy gets nervous and anxious about every little thing, she likes to be informed, she needs to understand what's happening -- and you all embrace the crazy I bring with me.  

Thank you for talking to me about good tv shows, where you went for dinner last night, your roommate's silly antics, your own kids, and the heavy metal show you went to last week.  Thank you for being people I can relate to and not just medical professionals.  This is my home and you are my friends and family. I appreciate the opportunity to talk about something besides heart rates and blood gases.  I also super appreciate all your Netflix suggestions ;) 
Thank you for bugging me to go out to dinner or go home to see my dogs.  Your job is to care for my child, but you choose to also care for me.  It's easy as a heart mommy to stop taking care of myself.  Thank you for picking up the slack and making sure that I'm okay.

Thank you for telling it to me straight.  I'm sure it's difficult to look a scared mommy in the eyes and tell her exactly what she doesn't want to hear.  I'm sure it's awful trying to comfort a terrified parent as they prepare to send their child off for what is a very risky procedure.  You have a special ability to tell it how it is while remaining soft and supportive.  

Thank you for blowing raspberries at my child.  Thank you for holding her hand.  Thank you for talking to her even when she is sedated and paralyzed.  Thank you for changing blowout diapers without complaint... only laughter.  Thank you for every attempt to give my sweet baby some normalcy, especially in times where nothing was "normal"

Thank you for acting quickly when things go drastically wrong.  It's like you have a switch to flip when things go from smooth and quiet to terrible at the drop of a hat.  I have seen nurses go from having a casual conversation at the desk to pushing epi and giving compressions in a matter of seconds.  You are skilled. You are rockstars.  You have proven it time and time again.  Oh, and hey, thanks for checking on me during and after said tragic events.  Again, not your job. 

Thank you for spoiling us rotten with little gifts here and there, sneaking us chocolates and snacks, and making us feel loved in various little ways.  Our Christmas tree was filled this year with special ornaments from thoughtful nurses. Our hearts are filled daily when you go out of your way  to perform small kindnesses. 

Thank you for checking on my child on your days off.  You work long days, you pick up overtime, you're constantly on your feet, and your job can be (and usually is) extremely demanding.  Yet you still take the time to check Sawyer's facebook for updates or text your friend who is working that day to see how she is.  When you come in days later, I attempt to give you an update, and you stop me because you already know.... well, my heart melts a little.  

Thank you for loving my child as though she is your own.  You show it in so many ways every single day. I can see your excitement as Sawyer makes progress and I can see your sadness when she takes steps backward.  Recently, Sawyer has found her smiles.  And nearly all of you have stopped in at some point to see if you can get her to smile at you.  I see your eyes when you're baby talking her.  I see the love.  I am so grateful for you.  Thank you for loving my baby. 

You all joke that because you wear red, it will be Sawyer's least favorite color when she is older.  But you are so wrong.  You are her family and she loves you.  You have saved her (more times than I care to say) and loved her.  You have been by our side every step of the way.  You will never know how much, and in how many ways, you are appreciated.  I thank God every single day for bringing us to Riley and blessing us with the most incredible team.  I believe you are all angels, and from the bottom of my heart, I thank you.

Thursday, December 25, 2014

So Much Has Happened

It's been a long time since I've blogged.  I think it's mostly because I've been so immersed in stuff.  We haven't had a quiet moment in over two months and it has all been so very hard.  I have been robo-medical-mommy for over two months and I feared that if I came here to tell our story... all the emotions that I have worked so hard to keep under control would come flooding.  And with everything we have been through since October 14, I would be absolutely worthless if I allowed myself to feel it all.  People are always telling me how brave I am and asking me how I get through each "event".  The truth is, I only allow myself limited opportunities to feel.  The truth is, if I felt it all... every desat, every blood pressure change, every bad gas, every blood product, every ecmo alarm, every surgery... If I felt it all I would be of no good to my little girl.  And she needs me.

I know several of you follow Sawyer's story on facebook, so you've gotten the updates as they happen, but I bet you haven't stopped to think about just how much stuff she has been through in 2 short months. Here's a synopsis... in order... to the best of my recollection. I challenge you to read it ALL, from beginning to end.

  • October 13: we had clinic with our cardiologist and were sent home on oxygen for low-ish oxygen saturations (65 - 70%... little did we know that later we would pray for these numbers)
  • October 14: we came to the Riley ER for continued low oxygen sats and a fever with high Heart Rate
  • October 14: we were admitted to the Heart Center Stepdown unit for observation and a little "boost" of oxygen through the nasal cannula. 
  • October 15-18: Sawyer continued to battle low oxygen sats (now in the 50's and low 60's) and high fevers. Blood cultures confirmed that she had a staph infection that got into her blood, attached to her heart, and grew a large infectious vegetation in her aortic valve. 
  • October 18.. morning: Sawyer's sats were steady in the 50's... she could no longer feed... she was extremely agitated, and I didn't feel like stepdown was an appropriate place for us any longer so I called a "cart" which sends the ICU doctors to your room.  They rushed Sawyer over to the ICU and she was immediately intubated.  That only helped her sats for a short time, so she was placed on nitric oxide as well. 
  • October 18... night: Sawyer was on full vent and nitric support and we watched as our doctor paced the room coming up with possible solutions. Her shunt was closing, and she needed a patent shunt in order to oxygenate.  The only options were emergency cath lab or ECMO.  He finally got a cath lab doctor on the phone, but then we all watched as her sats dropped to the 40's...30's...20's...We watched as our daughter's oxygen saturations dropped to 1 and then we were out of options.  They called general surgery and within minutes our room was full... an ECMO circuit was outside the door, everyone was in yellow gowns and masks, sterile and ready to put our daughter on full life support.  We went to a quiet room to wait. About 10 minutes in, we received our first update... her heart had reached its limit and they had begun compressions.  The next 17 minutes would crawl by... it felt like hours.  We sat anxiously awaiting an update, yet not wanting to hear what they might have to say.  Try as you might, it's impossible to push the scary thoughts from your mind... then you hate yourself for thinking it... and you pray that just because you thought it doesn't mean it would happen.  Dr. Lutfi comes in.  He sits down beside us and he says "She's on... she's on ECMO."  She made it.  27 minutes of compressions... one of the fastest ECMO cannulations ever, but our girl made it through what would be the first true fight for her life. 
  • October 19-20: Sawyer's body got the break it needed.  On ECMO, there is no real need for your heart to beat or for you to breathe.  The machine pulls the blood from the body, oxygenates it, and circulates it back through.  ECMO did all the work for Sawyer in this time.  She was medically paralyzed and mechanically vented. 
  • October 21: Sawyer went to the OR to have a new shunt placed by Dr. Turrentine.  Remember, she was on ECMO because her previous shunt failed.  
  • October 22: Bleeding. Lots of bleeding.  Like... liters of blood and constant replacement with blood product.  The ECMO circuit is very sensitive to clotting so they maintain high levels of heparin to keep the blood thin... because of the heparin... injuries bleed. Sawyer had a great deal of internal bleeding from her thoracotomy.  She was losing too much blood so it was back to the OR for exploratory surgery to try to find the source of the bleeding. 
  • October 24: Bronchoscopy to reinflate lung after the pooling blood collapsed it. 
  • October 25: More bleeding.  We had to quickly come off ECMO and just hope that her body would tolerate it.  I can't explain to you how I felt when they clamped her cannulas.  My eyes were glued to the monitor watching her heart rate and her sats.  They clamped and I watched her sats drop 1 percent at a time... holding my breath... wondering when they would stop.  Thank GOD!  70's and 80's.  Her new shunt was working!
  • October 29... NEC Watch.  After starting to feed Sawyer again, her stomach got very distended.  Feeds were stopped and she was placed on antibiotics.  We would start/stop feeds about a thousand more times during this journey. 
  • Sometime later that week:  We went to MRI.  There is an increased risk of seizure/stroke on ECMO.  After an ECMO run, it is standard practice to have an MRI.  With about 5 minutes left of her MRI, something happened... still not sure what... and they called a code.  They called it over the hospital speakers.  I was sitting in my room watching TV and I heard it. *ding* Code Blue: Simon Family Tower: MRI  ... I heard from the hall "Sawyer? What?" and I saw our team go running.  Thankfully this is what we now refer to as a "mini code" as she only got about 10 compressions. P.S. turns out she had a small stroke while on ECMO.
  • In the next few weeks, we tried relentlessly to wean her vent. We were having issues with her CO2 being too high whenever we tried to wean.  We finally got to a point where they thought they could extubate.  We tried... we failed. She was extubated for 10 hours.  She never physically looked good, but her blood gases were stable ... until they weren't.  She coded.  Right in front of me.  I was standing by her side and she went lifeless.  Then, in the blink of an eye... her room was full, she was reintubated, and she received 20 minutes of compressions and countless code drugs.  My husband had just left for the night and I called him "She's coding... come back!" "what?" "SHE'S CODING!"  I can't begin to explain to you what it's like watching your child code.  Watching as a team of amazing doctors and nurses take turns giving compressions... RT's take turns bagging her... people are shouting from every corner of the room "Push Epi... epi is in... how long before bicarb... time, push bicarb... let's get a gas... Where's echo?!?... still no pulses"  All the while.. I'm desperately watching her numbers wondering why  this is happening again... praying that when they stop compressions, she will have her own heart rate back.  I spent a while feeling guilty about this code... like I knew she wasn't ready to be extubated but I allowed it and we failed. 
  • November 10: My very dear friend and ICU neighbor lost her baby boy.  My heart broke in ways that I never knew it could.  Sawyer gained an amazing angel. 
  • Somewhere in here she had a "almost code" or "could be code".  Her night nurse noticed that her feet were cold and her pulses were weak so he drew a gas.  It was terrible.  Like... really, really terrible.  They were able to use medicine and vent settings to balance it all out, but it was scary.  
  • Why did her earlier extubation attempt fail so miserably?  An echo would show that the vegetation from her endocarditis (remember... she still has this!) had eaten away at the tissue of her aortic valve and it was causing a great deal of leaking.  Her body had to work EXTRA hard to pump blood to all the places it needed to... particularly her lowers (kidneys, liver, gut). She, rather emergently, got open heart surgery to correct this and remove her vegetation on November 17. Our surgeon, who we absolutely adore and respect, prepared us for the potential of coming back on ECMO... he prepared us for the potential of not coming back at all.  She was very very sick going into a very very complicated surgery... further complicated by a few respiratory infections acquired by the vent.  Surgery took all day 7:30 - 5:30.  She did come back on ECMO and nobody knew if she would ever recover.  There are not many kids who have two runs of ECMO.  We were very scared. 
  • November 17-November 21: Sawyer had a fairly uneventful run of ECMO.  She maintained her blood pressures really nicely and it gave her heart a chance to recover from her huge repair.  She did have bleeding, but instead of pouring out the chest tubes, it oozed from her incision.  
  • November 21: Sawyer went to the OR to attempt coming off ECMO.  Success! She had her chest closed a few days later. 
  • We would spend the next week weaning the vent.  She had a CPAP (practice breathing) trial to test how she would do off the vent and it went poorly.  From a respiratory standpoint, she did AWESOME, but her heart did not like it.  This was very disheartening.  We knew she wasn't strong enough for another surgery, and started to lose hope that she would ever be able to come off the vent. We decided to give her a couple of weeks on low vent settings to exercise, while her heart had a chance to heal.  It was all about growing and healing at this point. 
  • December 17:  Things had been going so well aside from some pretty persistent and unexplained fevers. We were on very low vent settings and Sawyer's heart rate and sats had been looking really good! It was a normal day, then at 3 AM, Sawyer coded.  In the moment, we had no idea why, but there we went.. down that same sadly familiar road.  Room full.. shouting out code drugs.. giving compressions.  I'm in the hall watching absolutely beside myself.  I tried to call Pat 11 times before I finally reached him (it was the middle of the night after all).  I just keep saying "Why is this happening?  How can this be happening? She was FINE!"  It was so scary.  Just so incredibly unexpected.  Shakes your whole world.  Beyond it being a super scary 20 minute code, there was added fear knowing that she couldn't just be placed on ECMO as she had no access for it.  That if the compressions and drugs didn't work.. that would be it.   Beyond it being a code... it was a code that was completely out of left field.  It was just like life laughing at me saying, "You are getting too comfortable, don't you know that things can happen in a matter of seconds with heart kids?  How dare you try to sleep.  How dare you say it's been a good day."  We later discovered the reason for her code was that her potassium was incredibly high.. which would make any one of us code as well.  
  • December 21: Only a few days out from Sawyer's code, we were ready to try to take her off the vent.  She had been on the vent for over 2 months at this point.  Her body hadn't had to breathe on it's own for over 60 days.  She had failed her last extubation so miserably.. to the point where she literally went lifeless.  It was scary, but now... Christmas Day.  She is still off the vent.  Only time will tell! 

Phew.  I know that was a lot.  Telling it is overwhelming. But the story of the last few months had to be told so that you all can understand why my daughter is the absolute coolest, most amazing human being on this planet.  Every day I find myself endlessly grateful for her strength, perseverance, and sass. I'm amazed at her ability and drive to soldier through.  When her doctors and surgeons tell us they can't believe she's here... that they can't believe she has made it this far, my heart melts.  There are just no words for the pride I have in her.  I find myself tongue tied just thinking about it.  I want to shout it from the rooftops but I can't find the words... the magnitude... to properly describe how much I love this child and how much I admire her strength and strong will.  I thank God daily... hourly... for my perfect child.  This life is so challenging, but I wouldn't trade it for another.  My daughter is a constant reminder to me and countless others how precious life is, how small our problems can be, how BIG our God is, and how attitude is everything.  She is my fighter... my miracle... and she has my whole heart. 

Thursday, October 2, 2014

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. 

Thursday, September 4, 2014

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! :) 

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!