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!

Tuesday, July 29, 2014

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! 
HEARTstrong Fundraiser - unisex shirt design - frontHEARTstrong Fundraiser - unisex shirt design - back

Wednesday, July 23, 2014

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!

Thursday, July 10, 2014

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. 

Sunday, June 22, 2014

The Paper Lantern Meltdown

In a normal pregnancy, there are certain "rituals" that women tend to find very exciting.  Picking out names, baby clothes shopping, creating the perfect space for their future bundles.  Expecting moms can't wait to get started on these things and often find themselves on Pinterest, scouring the web for ideas before they've even seen their first ultrasound picture! 

After getting our HLHS diagnosis, I was met with lots of worries and questions.  While I wanted to be excited for baby names and making the perfect nursery, I tend to err on the side of caution.  Here's a peek into my mind on the car ride home after our first echo: 

Should I have a baby shower?  Will we even have the opportunity to use all the "stuff"? 

No point in buying newborn clothes when her first few weeks will be spent in the hospital. 

Do I even need to get the things that healthy babies use?  

What do I do about a nursery?  Should I get a crib? Changing table?  What if she doesn't get to come home?  What would I do with a complete nursery if, God forbid, our baby never left the hospital? 

I know... not super pleasant thoughts, but I'm trying to keep it real and candid, here.  It's easy for people who have healthy babies and healthy pregnancies to tell us that everything is going to be okay and we should go about planning like normal.  I think only people who have been through it themselves really understand that everything is not fine and everything is not normal.  It will, however, become our new normal and we opted to move forward with as much optimism as possible.  We had a lovely baby shower.  We have a beautiful name for our beautiful girl.  And we are right in the midst of creating the perfect space to which we will bring our baby home. 



I knew a few things going into our planning.  I wanted grey walls, white furniture, and pink/yellow accents.  I also had dreams of hanging some happy, fun, delightful paper lanterns to brighten up the room and contrast against our dark walls.  Here were a few of my inspiration pictures. 

Paper lantern baby mobile

Lovely, right?  And so easy and simple!  

Well, we hit a small snafu in the paper lantern department.  Hanging paper lanterns requires you to be a bit carefree, placing them randomly in a whimsical fashion.  I am anything but random.  I'm precise.  I take measurements.  I space things evenly.  I like order and consistency.  I am not equipped to hang paper lanterns. 

I failed. 

And. I. Completely. Lost. It. 

So as I'm standing in our perfect nursery, ugly crying over paper lanterns, I had to ask myself why. 

Why am I crying over a couple of colorful orbs hanging from the ceiling? 

It wasn't about the paper lanterns.  It was about the idea of perfection.  My child is sick.  My child will be sick for her whole life.  There is nothing I can do about it.  I want so badly to fix her.  I want her to lead a normal, healthy life with a whole heart that functions like 99/100 other kids' hearts do!  She won't ever have that, though, and it's out of my hands.  But, what can I do?  What is within my reach?  

DUH!  A perfect nursery.  I can plan and create the perfect nursery, with nice furniture, bright colors, and happy happy happy! All was going well until I was defeated by the paper lanterns, and that is truly how I felt... Defeated.  So what did I do?  Did I re-hang the lanterns?  Nix the idea all together?  Call in reinforcements?  Nope.  I left them... exactly how they were.  4 paper lanterns, in an AB pattern, in a straight line, evenly spaced and centered right above her crib.  It may not be whimsical.  It may be nothing like our inspiration pictures.  And it is certainly not perfect.  But it represents us.  Our little family is not perfect... it is flawed.  We aren't "normal" and we'll never know what "normal" feels like,  but maybe normal is a little bit overrated.  We have more love than most families will ever get the opportunity to know.  

And, we have some raggedy looking paper lanterns to show for it. 

Bring it on, world, we can't be defeated.  

Monday, June 9, 2014

Doctor Who?

You may not know this about me, but I don't do needles.  I didn't even get my ears pierced until I was 17 and even then it was out of spite.  I don't do shots, I don't do doctors... dentists either but that's a conversation for another day.  I am definitely one of those people who has to be knocking on death's door to go to the doctor, and even then... be prepared to drag me kicking and screaming the whole way.   

How ironic that I now have nothing short of 5,000 doctors.  This little girl has forced me to man up and get over it, as I'm now quite a regular at the doctors office! 

Several of you have asked about our birth plan.  I can certainly understand your curiosity! And, oh, how I wish I had some answers to share with you!  I will be 32 weeks on Wednesday and I still don't really know our birth plan.  I was half joking, half concerned when I shared this tidbit with my husband. 

"You know," I said, "If I went into labor right now... I would have no idea who to call.  I don't even know what hospital I would go to!"  

As of right now, I go to Community North and have a regular OB - Dr. Crane.  She, however, will not deliver my baby.  
I also have a Maternal Fetal Doctor at Community named Dr.... uhhh.... Well I don't even remember his name, but I'm not a huge fan and he also won't deliver my baby. 
I can't have the baby at Community as it is too far from Riley (where our daughter will need to be transported right after birth).  It's looking like I will deliver at Methodist.  I might get to meet a couple doctors there NEXT MONTH who might deliver my baby when the time comes.  
I have met and been given fetal echocardiograms by two cardiologists from Riley -- Dr. Darragh and Dr. Farrell.  Both were awesome and will likely be involved in the care of our child after birth. 
I will meet several other Riley cardiologists in July.  Pretty much whoever happens to be working when we deliver will become our cardio care team.  
I will also meet our (hopefully) surgeon on July 9th -- Dr. Turrentine from Riley.  He is scheduled to be working when we expect to deliver.  

It is hard to keep them all straight and it is really hard not knowing who all I will encounter through this journey.  I won't even meet most of the people involved in our daughter's birth and surgery until 35 weeks. Yet I have to trust them to perform nothing short of a miracle.  I have to hand my daughter off to them, let them transport her to an entirely different hospital, and hope for the best.  In the first week of her life, I have to put my trust in these doctors to heal her broken heart with a highly invasive and risky procedure. 

Whew.  I mean... Seriously.  Wow. 

As of right now -- the plan is to continue at Community until 35 weeks, at which point MY care will be transferred to Methodist and Sawyer's care will be transferred to Riley.  I will FINALLY get to tour the facilities at Riley and get to know some of the people who will play a huge role in healing our daughter.  At 39 weeks (hopefully!!!) I will be induced at Methodist.  They will not take her by C-Section unless they have to.  I might get to hold her for a quick second, but I'm not counting on it at this point.  They will need to immediately transport her to Riley's NICU and get her put on a medicine called Prostaglandin which will trick her heart into thinking it's still in-utero.  Hopefully it won't be long til I can join her over at Riley.  That's the plan...though as our situation has taught us, plans can certainly change and likely will! 

We so appreciate your continued support and prayers.  If you are the praying type, please pray that Baby Sawyer continues growing bigger and stronger.  We received news last week that she is on the small end, 9th percentile, for growth.  We need her nice and hearty for surgery.  Trust me, I'm doing my part by eating, eating, eating!   It would be best if we could make it all the way to 39 weeks with steady growth!   Please also pray that God will provide for us financially, as we shift from two incomes to one, and feel the burden of hospital stays and medical care.  We are running a T-Shirt Drive now through the end of June to help with some of this financial burden, and more importantly, to raise awareness of CHD's and help future heart babies/families! Please click the image of the shirt below to follow the link!! 

Saturday, May 31, 2014

It's okay to ask!

Today was our baby shower.  It was absolutely lovely and I wouldn't change a second of it.  But just weeks ago... let's be honest.... just this morning, I was considering cancelling it.  I try to keep a positive attitude and outlook about our situation, but there are many times that I find myself worrying.  One worry that has crossed my mind many times is what we would do with all the stuff if, God forbid, we never got to bring our baby home.  Oops, sorry, is that awkward for you to read? It's part of our reality and not a part that we particularly enjoy.  But in the last few weeks, I've realized something -- nobody's future is certain.  There is no parent who knows with 100% certainty that they will welcome their baby into their home.  There is not a person in this world who knows what's coming, knows what tomorrow brings, knows what the future holds.  
We are hopeful. 

I'm SO glad we had our shower because the support from our family and friends is what helps us remain hopeful.  Our baby is so very loved and there are no words to express our gratitude. 

We know you all want to show your love and support, so let me just say this:  It's okay to ask.  It's okay to ask how we're feeling.  It's okay to ask how you can help.  It's okay to ask how the baby is doing.  Before we shared our HLHS diagnosis, these were questions I heard everywhere I went, from distant family, friends of friends, and complete strangers it seems! I thought that sharing our story would bring with it a barrage of questions, and it has done quite the opposite.  Some days I forget I'm even pregnant [okay, that's a bit of a stretch].  

After delivery, everything will be a whirlwind.  We have ten weeks left to feel "normal".  What do I mean by that?  I mean that like most pregnant women, I'm exhausted, congested, exhausted, swollen, fat, exhausted, irritable, emotional, exhausted.... NORMAL!  Please don't be afraid to talk to us about our pregnancy and about our plans.  I personally promise not to burst into tears or throw myself into a heaping pile of sobs on the floor.  It's not awkward -- it's life!  We are growing a very special baby, and we're happy to share our story with those who want to be involved! :) 

Sunday, May 18, 2014

Daddy's Little Girl

When I started this blog, I asked Patrick if he wanted to be a part of it.  I was thinking for sure he would say no.  To my surprise, he said he'd like to use it to reflect every once in a while.  If you read our last entry titled "Chosen" you learned something about my husband.  He is not someone who is very in touch with his feelings.  In fact, he is someone who really doesn't experience emotion like the rest of us human beings here on Earth ;)  However, as predicted, God is working in him in BIG ways!  He is opening Patrick's eyes, mind, and most importantly, his heart... all to prepare him for the biggest, most amazing moment which will come in just 12 short weeks -- meeting his little girl.
Daddy's little girl.
Patrick has been in Virginia for the last 3 and a half months at a school for the Army.  When he left, we had a "normal pregnancy".  We were still awaiting the gender of our child.  And, to our knowledge, she was perfectly healthy! We were planning her nursery and registering for all the essentials.  When he left for school, he was leaving a healthy mom and baby.  I can't even imagine having to find out over the phone that your child has a severe congenital heart defect -- one that can't be "cured" or "fixed"... one that would require not one invasive surgery, but three, all starting right after she enters this world.  I can't imagine having to be so far away while all this is happening -- the fetal echoes, the growth ultrasounds, the worried wife, the barrage of new doctors and new information.   Patrick wrote this blog about a week ago and I wanted to share it with you all today!
I think the most difficult part of all of this right now is that there is something wrong with our little girl and there is nothing we can do for her. It's my natural instinct to want to protect her from everything. She's not even here yet and I'm already failing. I have hope, though, and that may be the only thing that is saving me now. Is it hope? Or do I keep trying to wake myself from this dream? Either way... these next days, weeks, months, years...this is something that will never be fixed. It will never go away.  It's something that she will live with her whole life. In the beginning, when we first found out about this, we didn't know the severity of what she had. I also have a small heart condition and we thought it could be hereditary.  I don't think I have ever more guilty about anything in my entire life than the possibility of giving my daughter an incomplete heart. I suppose we all have incomplete hearts in one way or another, though. The best thing that I can do right now is prepare to make her spiritual heart full and overflowing with love. More to come, this is how I feel today.
So proud of him!  He's going to be the most amazing daddy for this little girl.  God picked well.

Friday, May 9, 2014


I know you all must be feeling sorry for us.  I feel sorry for us sometimes, too.  I try so hard to stay strong and to be brave, but when it comes down to it -- this sucks!  Eloquent, right? But there's no way around it. It really sucks.  I have a request for you... try not to feel bad for us.  Try to feel hope for us.  Try to feel brave for us.  Though this situation is not ideal, we have to believe we were chosen for it.  Hand picked to be our daughter's parents.  I do find myself asking "why us" on occasion.  I am guilty of feeling jealous as my friends progress through their healthy pregnancies.  I see pictures of peoples' new babies and wish that our baby would make an easier entrance into the world.  I see people complain and find myself bitter, as their problems seem so small.  My mind goes there, and I'm not proud of it.  I get myself out of those funks by reminding myself that God picked us for a reason.  It's impossible to know His reason or His plan now, but I've come up with some ideas.

What can I gain from this?  (besides a totally awesome, strong, and beautiful daughter)
I am someone who must be in control... all the time... in every situation.   I have to know every detail of everything going on.  The unknown doesn't work for me.  I don't like surprises.  I have to have all the answers.  I'm the kind of person who likes to do things on my own because then I know it's done my way, to my standard, and on my timeline.  I'm hesitant to ask for help or to let people participate, because I have little faith or trust that they will accomplish it as well as I can.  Control

There is no control in this situation.  There is NOTHING I can do.  It is all out of my hands.
 And it.
 I wish so badly I could fix this for my daughter.  I wish I could make it better and do it all myself, but I can't.  All I can do is trust the doctors and have faith in their work and in God's plan.  I don't have all the answers, and I really long for them.  But as her condition develops, the answers will change.  As she progresses through her surgeries, the answers will change.  Everything is up in the air and it forces me to let go of control and just live day by day.  God has a lesson for me.  God will help me through it.  I will be a better, stronger, more faithful person because of this.

What can Patrick gain from this? (besides a totally awesome, strong, and beautiful daughter)
Patrick has never been someone who is in touch with his emotions.  He's one of those people who dismisses his feelings.  Where I live in the highs and the lows, he lives right in the middle.  He doesn't show great joy and he doesn't show great sadness... he's perpetually complacent.  This situation has really shaken up his world.  He's feeling emotions poking through that he can't contain, and he's forced to come to terms with them.  In the next year, he will feel SO much -- some good, some bad.  It will all be inevitable and unavoidable.  Sadness, fear, guilt, jealousy, happiness, pride, joy, love.  He will really run the gamut.  God needed a way to open him up, and he provided it through our daughter... our seriously awesome daughter.

We both have room to grow, and we will experience so much personal growth through this.  We hope to grow together as well and to grow in our faith and relationship with God.  This will certainly be a trying time, but we know that we were chosen... so do not pity us, just continue to support us the way you have been. Your love has been so humbling and helps us more than you know.  In a time during which it would be easy to lose hope, you give us greater hope than we ever could have imagined. Thank you. 

Tuesday, May 6, 2014

Google - Friend and Foe

As promised, let's chat for a second about Google.  I'm sure by now you've been curious enough about HLHS to want to know more.  What did you do?  Did you head to the library?  Did you call up a pediatric cardiologist?  Or did you head straight to everyone's favorite search engine? (because let's face it... Bing sucks) 

If you've gotten the chance to google (I hate that this is a verb) a little about our baby's condition... you know that it's scary.  When you've gotten the chance to google it as much as I have... I'm talking days of googling... you'll understand why I call google a Foe.   Google has loads of information, and sometimes just a little too much. The truth is, with HLHS, no two cases look exactly the same.  It's not a textbook condition with an easy fix.  It's a condition with a lot of variables, that takes careful planning on the part of very skilled cardiac surgeons to palliate. Did you have to google the word palliate?  Basically it means our daughter will never be "fixed" just given temporary solutions for as long as they last.  Here's the limited information that we have so far.  We will know more at the end of the month. Don't even get me started on the waiting game... it's worse than google.

Our daughter has Severe Aortic Stenosis (narrowing of the aorta and the aortic valve).  During the first 8 or so weeks of pregnancy, her aorta simply didn't form fully or correctly.  This can be genetic, though there is no history in either of our families.  Because of this narrowing of the aorta, her left ventricle has to work too hard to pump blood through.  The muscle, straining, has already begun to scar and show signs of hypertrophy.  In the next 14 weeks or so of gestation, the muscle will continue to thicken and, as the rest of the heart grows, it will shrink -- rendering itself useless.  The right ventricle (perfectly healthy!) is in charge of the lungs.  The left ventricle's job is to pump blood out to the rest of the body. When a baby is born with HLHS, a series of 3 (or more) surgeries are required in order to reroute the valves to allow the right ventricle to pump blood, not only to the lungs, but also to the remainder of the body.  In short, this allows a child to function with only half of a heart.  It's pretty incredible.  Is the solution perfect?  No.  Does it always work?  Absolutely not.  There are a number of complications involved and, like I said earlier -- no 2 cases are the same.  I guess us heart parents just have to hold on to a whole lot of hope!!!  

The general sequence of the 3 major open heart surgeries is:
1) Norwood - within the first week of life.  This surgery holds the highest risk and the time between the Norwood and the next surgery is very critical.
2) Bi-Directional Glenn (or hemi-fontan).  This surgery typically takes place between 4 and 8 months.  The time in-between the Norwood and the Glenn is called interstage and is a long, scary time.
3) Fontan - The final surgery has a wider range of completion ... somewhere between about 1 and a half years old to 4 or 5... all depending on that child's case and health.

In between those surgeries -- we're certainly not home free.  There are lots of echos, heart caths, and observations to look forward to.  We will get to know the staff at Riley very well!

Thank you for coming here to learn more about our journey.  I will continue to update you as we learn more and just ask that you keep us in your thoughts and prayers as this is never something we expected, but something that we are working hard to prepare ourselves for.  We have been overwhelmed by your love.  What a blessing to bring our child into the world with your support, care, kind words, and prayers.

Should you still feel the urge to learn more, skip the search engine-- here are a couple of reputable links with further information about HLHS.

Sunday, May 4, 2014

Except and Accept

As a teacher, I'm constantly baffled by the English language.  So many rules and so many rule breakers. Then there's the homophones... oh, God the homophones.  To, too, two... there, their... your, you're.  We (well, not I, but probably you) misuse these words all the time.  Today I want to share with you how a couple of homophones have changed our lives forever in the Kelly house. 

As you probably know by now, we're pregnant... expecting a sweet baby girl in early August.  Not long ago, I went in for our 20 week anatomy scan.  Of course I was excited to get to see the baby again, as it had been 8 long weeks since seeing that little wiggle worm.  We were also excited to find out the gender. Nobody ever goes into these scans thinking of all the very real possibilities -- we don't consider the fact that they are literally going to measure every single bit of anatomy on the baby.  We don't consider the fact that they could find something wrong -- we are just filled with excitement, reasonable and justifiable excitement.  I attended this ultrasound alone, as Patrick has been away for a few months playing Army in Virginia.  It was a lovely experience and I enjoyed watching her wiggle on the screen.  Then I sat down with my doctor and heard the first word that would forever change my life...

"Everything looks great, except...


There's not supposed to be an "except".  Everything is supposed to just look great. 

This was the moment that I learned my child had the possibility of a Congenital Heart Defect and that I would have to wait a month before I found out anything else. Of course I called Patrick immediately, with everything still a whirlwind, attempting to replay the moment word for word in hopes that the news would change while I was sharing it. 

Friends, a month is a long time.  A month alone is even longer.  A month alone and with GOOGLE (more on that later) is longer yet.  My head spun with the possibilities.  I learned as much as I could about every single CHD I could find, and I mourned... a lot.  I mourned the loss of a healthy baby.  In the midst of all my googling, I told Patrick ... whatever it is, let's just hope it's not HLHS (Hypoplastic Left Heart Syndrome). And now here we are, a bit over a month later, two more ultrasounds and one fetal echo later, with a definitive diagnosis for our sweet baby.  HLHS.  In short, the left side of our baby's heart is underdeveloped and losing function every day.   There is no fix, but there is a series of open heart surgeries in order to remedy the defect, allowing the right heart to do the work of both sides.  I will share more information as time passes and we gain a greater understanding, until then ... there's always google. 

After the news of our fetal echo, I spent hours researching... hospitals, doctors, surgeons, procedures, statistics, personal experiences -- you name it.  And all of that has brought me here... to the second word that will change our lives ... accept. 

We have no choice in this.  We didn't do anything wrong.  In fact, we did everything right.  Yet, still, 1 out of 4,344 babies is born with this condition each year.  This is our reality and it will shape the rest of our lives.  We can choose to live in denial, we can choose to be angry  or we can accept that this is our journey.  And that's what we're doing.  We have accepted this and we are moving forward.  We appreciate your support, positive vibes, thoughtfulness, and prayers as we embark on this journey.