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Thursday, November 29, 2012

The Facts of Life

A lot of people have been asking specifics about R's heart, so here's an update on the past two months:

The long and short of it is that he is doing amazing. He's had no breathing problems, eats like a champ, and has already surpassed the 10-pound mark.

He sleeps a lot, but he also plays really hard. When he's awake, he has a ton of energy and moves nonstop. He smiles all the time and is such a happy baby.

Before he was born, we were told that he would most likely go into congestive heart failure within a few months. That he would be lethargic and have trouble breathing and gaining weight.

But our little man is a fighter! The cardiologist told us last week that he is the "healthiest" AV Canal baby he's ever seen.

Obviously, his heart would eventually fail if he didn't have the surgery. But because surgery is imminent, we have been blessed to avoid that part of things.

That being said, his doctors have kept him in a bubble because he can't risk getting sick. It's cold and flu season, and even a small respiratory infection would put him in the hospital.

It's been insane. He has never been anywhere except to the doctor's office (and once to his aunt and uncle's house). He's not even allowed in the waiting room for fear of germs -- we go straight to the exam room.

A nurse comes to our house every other week to administer an injection to prevent against a respiratory illness called RSV, and anyone that comes into our home is required to have the pertussis (whooping cough) vaccine.

Even then, no one is allowed to meet him if they have even a hint of a runny nose. (More than one person has looked at him through the window like he's a puppy at the pet store.)

My poor aunt drove all the way from Houston and never even got to hold him because she had a cough.

For the past few weeks, L has also been quarantined, which has added a whole new element of fun.  I've been trying to keep her entertained, but she's not allowed around other children, so our options are limited -- kids are little petrie dishes afterall.

[If you need tips on how to survive isolation with a two-year old and a newborn, you really shouldn't ask me.  I'm still trying to figure it out. It involves a lot of caffeine (me), a lot of TV (her), and several meltdowns a day (both of us).]

It will all be over soon, though, because R is having open heart surgery next week at Children's Hospital Boston. We chose Boston because they are not only the top ranked children's hospital in the nation, but ranked #1 in pediatric cardiology as well.

R has what is called Complete AV Canal (there is also a defect called Partial AV Canal), and the surgery is tricky as it depends on repairing the heart valves and late valve function -- not just closure of the holes. The surgeons in Boston specialize in this procedure and perform twice as many valve repairs as the second leading hospital in the country.

If you're interested, here's a little video that sums up what they do and why they do it.


You still with me?

Anyway, we head up to Boston on Tuesday, December 4.  He will have 6-8 hours of pre-op starting at 7AM on Wednesday, and his surgery will take place on Thursday, December 6.

He will be in surgery the majority of the day and will recover in the CICU for a few days before he is moved to the cardiac wing.

We were told that he will be sedated for a couple of days post surgery as they manage his pain. He will also have to be fasted following surgery, which will obviously be much easier if he is sedated.

We were also told to expect an 8-10 day recovery, but that he could go home sooner or later -- depending on his progress. (Cross your fingers for sooner!)

We've had a difficult year and the past few weeks have been particularly nerve-wracking as we get closer and closer to the big day. But, we're also extremely excited about getting his little heart fixed and moving past this chapter in our lives!

That being said, we wouldn't be able to get through any of this without our friends and family. We want to say a sincere thank you for all of the love and support that has been sent our way.

So many of you haven't even met him and love him anyway. And for those of you who have met him, you had to get a shot just to have the opportunity to hold him once -- now that's love!

Your calls, texts, emails, cards, meals, gifts.....all of it means the world to us.  We are looking forward to seeing some of your faces next week as you come to Boston to lend your support, and we can't wait for everyone to finally get the chance to meet our little man in person (and give L a big squeeze, too).

2013 is going to be the Year of the Conleys, and don't think for one second that we're not going to have a big ass party when all is said and done.

As my best friend tells me daily -- we've been in training for the past 10 weeks and the Olympics are finally here.

We're going to get up to Boston, do what we gotta do, and bring home the GOLD.




Sunday, November 25, 2012

My Side of the Story

It is my hope that one day I can help other people going through the same things we're going through. When you're in this type of situation, you need someone who has been through it -- no one else can possibly begin to understand.

When we were first diagnosed with everything, I ate, drank, breathed and slept other people's blogs.  Some of them I liked more than others. Some were funny, some were sad, some were boring, some needed a serious case of spell check and a GED.

But all of them I could relate to. I had many of the exact same thoughts and feelings.

This is my version of things. Maybe it will be more of the same.  But maybe someone will find something here that they didn't find elsewhere.

Maybe you will agree. Maybe you won't. But it's my story. And I'm writing it as I go.

We are the authors and editors of our own lives, afterall.

The truth is that our lives don't revolve around a diagnosis. But I will talk about it a lot because it's what we're going through right now. And I do feel a sense of responsibility to relate, educate and advocate.

Because while those of us that experience this are all different, it seems the gamut of emotions is pretty much the same no matter who you are.

Heart defects and Down syndrome are scary. They are the unknown. They are The Thing That Will Never Happen to You.

Until they do.

It is my hope that those of you in similar situations find something here that helps you out. Or that you at least find comfort knowing you're not alone.

And that those of you who aren't going through this understand what these diagnoses really mean, and see for yourself that people with Down syndrome are just that.  People.

Besides, writing it all down helps me wade through this unchartered territory. It helps me figure out what I think and feel about different aspects of this journey. I will grow and change as time goes on -- this is a fluid process and what I feel today may not be true tomorrow. Documenting it will help me tremendously with finding my ground.

One day in the near to distant future, I'll write about the pregnancy and the emotional roller coaster that we were on for seven months (and are still on, to a degree). Honestly, I'm still processing a lot of those thoughts, and it's going to take some time to get them on paper.  But they will come, because it's important.

For today, I want to say that while the heart defect still terrifies me, I'm not as scared by the Down syndrome anymore.  Do I worry?  Yes, of course.  We all worry about our children.  I wonder about his future and who he'll be as an adult.

But the reality is this.  He is a beautiful, cuddly, sweet, typical baby boy.  He smiles and coos and grabs his toys and loves his playmat. He is a pig just like his sister, and here's what will piss you off:  He sleeps 9-10 hours a night.

(Yeah, I think the Lord baby Jesus threw me a bone on that one.)

Sure, part of me wishes that the only things we had to "suffer" through were late night feedings and acid reflux. Unfortunately, we have infinite fears and anxieties for R.  

A lot of those are related to his heart and will be over soon.  We know it won't always be this way.  We won't always be in isolation, scared of germs and fearing the worst as our baby boy gets closer and closer to surgery day.

At the same time, we are cognizant that getting through one stage in life doesn't guarantee that we won't have another battle right around the corner. That maybe this one particular worry will go away, but there will be many more waiting right behind it.

But we can deal with those stresses. 

Our biggest problem by and large is going to be keeping me out of jail.  Pat says he carries around bail money, just in case.  Because this is the truth:  If anyone messes with my babies, they will wish they never met me.  The stuff that people have said to us when they are trying to be NICE is bad enough. 

Lord help the person that says something mean.

Regardless of whether or not I end up in prison, I have huge hopes and dreams for both of my children.

My wishes for L are vast and endless. That she will be a good person. That she will be kind. That she will be a leader.  That she will help others in need. That she won't have too many challenges in life. That if she does, she will fight to overcome them. That her dreams come true. That she knows she can be anyone or do anything. That she remembers where she came from. That she always knows that she is loved.

(That if she ever beats up another kid for making fun of her brother, I'll pretend to be mad, but will secretly be high-fiving Patrick and doing a little jig because that kid had it coming.)

Of course all of these dreams are the same for R. But I also have different hopes for him.

My dreams are that by meeting him, other people become better. That he will be treated kindly. That although life will present him with more challenges than most, he knows he can overcome them by working hard and fighting against any stereotype or statistic that stands in his way. That he dreams big and knows he can accomplish anything he sets his mind to. That though his dreams may outwardly contrast with those of others, they are dreams nonetheless. That he may be different in a few ways, but he is alike in many more. And that while his differences are a part of him, they are a small part. They make him no less important than anyone else. And that while we will let him go his own way, he will always have a home with us.

That he is loved.

When I am with my son -- holding him, playing with him, kissing his chubby cheeks -- all of my fears seem to vanish. There is no anxiety. No what ifs. No sadness. No heart defect. No impending surgery. No doctor's appointments. No Down syndrome. No therapies or delays. There is just him.  

He is ours. And he is perfect.



Sunday, November 18, 2012

Number Games

It's been over two years since I've posted, so forgive me if I'm a little rusty.

It's always awkward when it's been awhile, isn't it?  You run into someone you haven't seen in two years and you're like:

"Hey!  How are you?"
"I'm great, how are you?"
"I'm great!  So great to see you!"
"So great to see you too!  How have you been?"
"We've been great!  Really, really great. You?"
"We're great.  Doing just great."
"That's great...."
"Soooo great."
"Well..."
"Well..."
"Well, I've gotta run but it was SO GREAT to see you!"
"It'd be great to get together soon. It's been too long."
"Great idea!  We'll talk!"
"Great. Bye!"

I so don't want my return to blogging to be like that. Because you know your first thought after that conversation is:  I will pretty much die if I have to spend an entire evening with that woman, and that was the stupidest conversation I've ever had.  Note to self, switch to another grocery store.

But whatever.

I'm back and it's awkward because I don't know where to start or how to start, or if anyone is even reading this for that matter.

But, they say you gotta dive right in, so here we go.

Patrick and I are THIRTY-TWO years old.

Sweet L is TWO and a half.  In her own words: I two!

Baby R is NINE perfect weeks old.

Dis, the Original (yet often neglected) Gangsta, is EIGHT years old.

Just some basic stats -- everyone has them.  Nothing to really pay attention to because they are what they are.  But in the last SEVEN months, stats have taken on a whole new meaning for us.  We've discovered that numbers are a powerful thing.

Ironic, for someone who loathes math.  But that, I'm discovering, is life.

SIX months ago, during a Level TWO ultrasound, we were told that our unborn baby boy might have a heart defect.

NINE long days later, it was confirmed that he did in fact have a heart defect, and that it was a major one. Oh, and that it was a defect that is often linked to Down syndrome.

ONE day later, I spoke with my perinatologist for THIRTY minutes on the phone, and he told me the chances of him having Down syndrome are now FIFTY/FIFTY.

THREE days after that, I was one of the FIRST people in Louisiana to have a brand-new, non-invasive blood test to determine which HALF of that equation we fell into.

TWO terrifying weeks later, I received a ONE minute, THIRTY second phone call that will forever serve as my before and after in life.

At EIGHT-FIFTY-ONE in the morning on Monday, June EIGHTEENTH, the doctor called to confirm that baby R was, in fact positive for Trisomy TWENTY-ONE.

Down syndrome.

THREE hours later, my husband and I sat for THIRTY quiet minutes and held each other while I uncontrollably sobbed.

TEN days later, we found ourselves in Massachusetts, having SIX hours of meetings with the good doctors at Children's Hospital Boston about our son's inevitable open heart surgery.

Approximately TWENTY doctors appointments, THREE months and several THOUSAND worries later, our sweet little boy was brought into this world weighing SIX pounds, SIX glorious ounces.

FIVE hours later, he was taken to the NICU.

FOUR awful, terrible, miserable, lonely days later, he came home to us. Where he belongs.

We have spent the last NINE weeks in isolation, with TWO more to go until his open heart surgery.


*******

ONE in every SIX-HUNDRED and NINETY-ONE babies is born with Down syndrome.

This stat would be higher, but INNUMERABLE pregnancies are terminated after a prenatal diagnosis of Down syndrome.

The chances that we would have a baby with Down syndrome were ONE in NINE HUNDRED.

AV Canal is present in TWO out of every TEN THOUSAND births.

Congenital heart disease is present in ONE HALF of all children born with Down syndrome.

TWENTY percent of children with Down syndrome have AV Canal.

Alternately, ONE-THIRD of all children with AV Canal have Down syndrome.

Most children with AV Canal have repair surgery by the time they are SIX months old.  R will have his surgery ONE week before he turns THREE months old.

There is a NINETY-SIX percent survival rate for his surgery, with only a TEN percent chance he will have to have follow up surgery.

I'm a MILLION percent sure that he'll be okay, but that's only because I have ZERO choice but to think that way.

(TWO to THREE glasses of white wine a night help with that.  I just wish I could chain smoke about FIFTY cigs. A girl's gotta have some type of outlet.)

All of that said, I am ONE HUNDRED percent positive that I am the most blessed woman in the world.

I have learned INFINITE lessons through all of this, with THOUSANDS more to come.

My brain has a MILLION thoughts swirling around and this is just ONE of many posts in which I will tell you all about them.

I have ONE amazing husband and TWO beautiful, perfect, delicious children.  ONE of whom eats every THREE hours and stops my heart when he smiles.  The other who asks me NINE MILLION, SIXTY-FIVE THOUSAND, THREE HUNDRED AND SIX questions a day and never ceases to amaze me.

I have changed in COUNTLESS different ways, but I'm still totally me. A more grateful, more aware, more understanding, more loving, better me.

(I'm also more worried, more annoying, more protective, more exhausted and more neurotic. But that's not relevant to this particular discussion.)

So, my life?  My very new, very different, very much the same life?

Other than trading my heart for his, I wouldn't change ONE single thing.



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