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!!