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.

Chosen

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.
 is.
HARD.
 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. 

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.

Boston's Children Hospital

The Children's Hospital of Philadelphia

Cincinnatti Children's Hospital

 

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..." 

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.