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.