Twas the Night Before Induction...

..and all through the house...

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

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

Sleep now, they say. 

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

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

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

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

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

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

Click the pictures to check out the shirts! 

Phew, that was quick.

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

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

Yes. One week.  7 days.  168 hours.  

Say what?!????

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

You must be so excited!!

Are you nervous yet?

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

Are you ready?

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

From Samantha

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

From Patrick

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

It's not all rainbows and unicorns.

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

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

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

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

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

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

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

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

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. 

Perfect. 

Right. 

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. 

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.  

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!! 

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! :) 

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.