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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.




3 comments:

  1. Ah, the ol' pertussis... Looking forward to when you don't have to worry about that anymore! Also looking forward to the Year of the Conleys and that big party. Much celebratin' is certainly in order. Love y'all!

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    Replies
    1. The Olllll' Pertussis. It'll gitcha every time.

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  2. Can hardly wait to be able to meet and hold Reid! Looking forward to the celebrating! Love & hugs to all!

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