Videos from the Heart

Heart Month can be a sweet month and a tough month for Heart Families.

Most of us look at CHD awareness week as just a time to do just that: build awareness, inform the public that CHD's are the #1 birth defect, so people are better informed and so we can secure the funding we need to keep our kids alive because a lot of people don't know about us or our stories.

On the one hand, it's most definitely a time to celebrate, to be thankful, and to be grateful for the medical interventions that are now possible for our children.  And that makes us all feel a certain gratitude and thankfulness that's impossible to explain.  The feeling of joy is indescribable when you are among the lucky ones -- lucky enough to still have your heart child.  We are the definition of the word "hope."

And on the other hand, Heart Month becomes a time (whether you like it or not) to reflect and to remember just how hard this road has been.  Sometimes we get angry.  Sometimes we cry about the hardships our children, our marriages, and our families have had to face because of this diagnosis.  We mourn the loss of normalcy in our lives.  We mourn the many little CHD angles that didn't make it.  And most of all, we connect with one another and turn to each other for the much needed support that is required in order to continue on this journey of raising a child with half a heart -- hopefully into adulthood.

In an effort to continue to raise awareness and to honor the struggle, the sacrifice and the love that makes up our reality as heart families, here are some videos from the heart:

The Heart of the Matter -- how they are helping save our children

Clara's Story -- what it's like to find out and then forge ahead 


Clara's Heart from Joe Portnoy on Vimeo.

Will's Story -- what it's like to live at Boston Children's Hospital with our newborns

Haven's Story -- what it's been like for us

Untitled from Molly Foley on Vimeo.

Heart Month

It's heart month and I'm a heart mom, so the whole Valentine's thing, the colors pink and red, the little heart shape cut outs and general cheesiness of the holiday that honors the very organ my little girl only has half of -- has a taken on new meaning in my life.

I never knew this, but heart defects are the #1 birth defect.  How the hell did I miss that when I found out I was pregnant and started preparing to have a baby?  I, like everybody else I know, fretted and fussed as I got closer and closer to my 18 week ultrasound about my test results for down's syndrome, other chromosomal disorders they always talk to you about, whether the baby had all it's arms and legs, fingers and toes.  I never once thought about the heart.

I remember when at my 18 week ultrasound, at some general run of the mill hospital, they told me they couldn't get one of the ultrasound pictures they wanted.  I didn't think anything of it.  They didn't seem worried, so I wasn't worried.  They even asked me to walk around a little bit, stand on one leg and jump up and down, I guess trying to get the baby in the right position so they could get the picture they wanted.

I'd never been pregnant before, so I just figured the baby was in a bad position, it needed to move, and once it moved or finally settled into the right position they'd have the picture they needed and we'd move on.  Move on to more pressing issues, like do we want to know the sex of the baby-type issues and how fat am I actually going to get?  So, after jumping on one leg, peeing, walking around, doing all kinds of things to try and get that baby to move -- they decided to have me come back in a couple weeks for a level II ultrasound, which would most definitely get the picture they were looking for and likely the baby would be in the right position and everything would be fine.

That next appointment seemed like a bit if a nuisance more than anything so I told my husband not to worry about it and that I would go on my own and that way he wouldn't have to take off work again for another silly OB appointment.  So, off I went to the level II ultrasound during a lunch break at work.  Was not worried in the slightest.  The ultrasound tech did her thing, said she was going to have someone else review the pics and then she'd be right back.  Alone in the dark of that room, I definitely started to get a little nervous.  Could something actually be wrong?  I'm super healthy, I don't smoke, I don't do drugs, I've been eating like a total health nut, I'm working out, I'm like the healthiest I've ever been -- what could possibly be wrong?

When she came back she told me that a fetal cardiologist from Beth Israel who floats to outlying hospitals to review level II ultrasounds would be in shortly to talk to me.  That's when the panic set in.  He walked in, he sat down, and he told me that after reviewing my ultrasound, he was almost 100% sure that the reason they hadn't been able to get a "good" picture of the right side of the heart was because there wasn't anything to take a picture of.  The right side of my baby's heart was not developing.  She had half a heart.

I heard most of that but it was like a scene in a movie where everything slows down, his lips were moving but there was no volume.  I didn't even really understand what he meant.  Was it a death sentence?  Was the baby alive?  Did it die?  Was it going to die?  Was I going to miscarry?  Would I deliver a stillborn?  I couldn't even begin to fathom anything other than this ending horribly, horribly wrong.  At that moment.  I was convinced this pregnancy was over.  And if the pregnancy wasn't over, I was almost certain I would be the mother of a very, very sick and very, very disabled child -- at best.

And I was alone.  In my naiveté, I had come to this appointment by myself so as not to inconvenience my husband and his work schedule.  The doctor handed me a business card for the Advanced Fetal Care Center at Children's Hospital Boston and told me I needed to make an immediate appointment to be seen by them.  The next thing I remember was being in the elevator.  Stunned.  I couldn't even remember how to get out of the hospital and I had already been there a dozen times.  Once I finally found my way to the parking lot, I realized I had to call my husband.  What the hell was I going to say?  How do you even start that conversation without entirely freaking someone out who is thirty miles away and at work?  I knew the moment I dialed his cell phone number that in one way or another, this conversation would change our lives forever.  That this phone call, and what I had to tell him, would test the whole premise of our relationship and what our marriage was really about.

I told him something was wrong with the baby's heart.  That I couldn't even begin to try and explain it, I was crying so hard I told him I needed him to call the doctor who had just seen me in the ultrasound room and try to get him to explain it because I couldn't even remember what he had just told me minutes before.  I told him I didn't even think I could drive the two miles home to our house until I could remotely pull myself together.  He said to stay put, that he would call the doctor, call my parents, have my parents pick him up from work and drive him to where I was.  I knew that his heart was broken for me, knowing I was sitting five months pregnant in a parking lot unable to move, I knew he was scared for the baby and that under all that scary shit he was terrified for himself and what this would mean for our family we hadn't even started yet.

That was the beginning.  But the beginning turned into this success story.

And not that any one thing would have lessened the shock from that moment when I found out my baby had half a heart -- I can't help but think that if I was I was even remotely AWARE of how common heart conditions were -- maybe I would have been the teeniest tiniest bit more prepared?  Ok, probably not.  But still.  Hindsight is always 20/20 but when I found out that heart defects where the NUMBER ONE birth defect?  I just could not fucking believe that statistic.  How the hell is that possible when I had never even heard about if before?  If it's that freakin common, why the hell isn't anyone talking about it?  How did I miss this?  And it doesn't change the fact that my daughter's diagnosis is super rare and a fair amount of heart defects can either correct themselves on their own (how cool is that by the way?) or involve a minor procure once the baby is born.  But you can't deny the fact that you still see more social media around down's syndrome, cancer, and cleft lip.  And all of those diagnosis are super important too, but how did the heart defects not get to sit at the cool kids table and be included in the list?  Something's not right here...

So, in honor of this February's Heart Month -- Boston Children's Hospital made a video about it (I'm the one awkwardly bopping up and down too much and closing my eyes when I talk) and you can watch it here:

So, pass this video around to anyone you know who is pregnant or thinking about getting pregnant.  The more you know, the better -- right?

And when you do "pass" your 18 week ultrasound with flying colors like I did with my second pregnancy -- or when you are kicking back reading What to Expect When You're Expecting and starting to sweat the small stuff -- just take a minute to REALLY grasp what has to happen to make a healthy child.  And just reflect on how truly awesome and amazing it is that it goes right as often as it does.  Think of all the healthy pregnancies and healthy babies you know in your life and then multiply that by a gazillion.  How unbelievable is that?

I never truly understood the whole "every life is a miracle" thing until I had a sick child.  I am not a religious person but I have no problem bowing down to the unbelievable science, wonder, and general how-in-the-hell-does-procreation-freakin-happen-perfectly-over-and-over-and-over-again let alone the sheer amount of just plain old luck that goes into giving birth to a 100% healthy baby.  THAT is probably the most remarkable thing ever.

A healthy baby is quite literally a miracle of science.  And a sick baby, in our case, is as lucky as anybody else -- even with half a heart because of these ridiculously talented people.  Play the Heart Center video.  It takes two minutes, seriously, just do it.  Imagine saving people's lives who weren't born with the anatomy to live by figuring out a way to allow their bodies to work with what they've got?  My kid has half a heart and you couldn't survive with a diagnosis like that until these people decided:  Yes you can.  Try that for a 9-5 job.  It will make you question why you thought you had a bad day at work yesterday.

Happy Heart Month, everyone.  Hug the people you love and be sure to tell them how much you love them.  Because we're all miracles in one way or another and it took a hell of a lot of luck and crazy science to get us all here and on the planet in the first place.

No point in boohooing Valentine's Day.  Take full advantage of it.

xo

Mormonland

Cheers to Moromonland!  Successfully traveled with the two kids out to Southern Utah and managed to miss the blizzard back East.  Thank you, Jesus Brigham Young.  How lucky am I that my parents bought a little place in the Southern Utah dessert - just one hour and forty-five minutes from Vegas where I can defect each winter in an effort to not end up one of the profiled criminals on Nancy Grace due to completely losing my mind as a stay-at-home-mom with two small kids who are relegated to the indoors when two feet of snow gets dumped on your already isolated lifestyle.  Thank you Mom and Dad!
Kinda weird that it's a conservative Mormon/Republican community and you guys are flaming liberal Democrats, but since it's 60 degrees and sunny almost everyday here during the winter?  I can get over that it's a dry town and everyone is blonde.  

My dear husband traveled out here with us, got to spend a little under a week here but had to go back to the salt mines just in time to also spend every waking hour that he's not working -- shoveling.  I definitely have the better deal since I will stay out here with the kids until March and it doesn't really get below 55 and there's hardly a cloud in the sky most days.  Pretty sweet stuff.

So, here's the scoop on Mormonland and why a place you seemingly may have next to nothing in common with might just be your middle-aged-vacationland-fantasy :

1.  Everyone goes to church on Sunday.  And I mean LITERALLY EVERYONE.  So, you basically have the whole town to yourself.  Yes a lot of things are closed -- but the things that are open?  It's like having your own personal Starbucks, Costco, and Albertsons.  All. To. Yourself.  No lines.  No traffic.  It's like stay-at-home-mom's heaven out here on a Sunday.

2.  Mormons have like 13 kids a piece by the time they are 24.  After bringing the kids out here the last couple of years -- I don't know how children even survive in Boston.  We have a Dunkin Donuts on every corner.  This place has changing tables on every corner.  You can literally go ANYWHERE and whether it's a restaurant, store, playground, you name it -- everywhere is loaded to the gills with all your diaper changing, bottle making, and snack distributing needs.  And EVERYTHING seems like they installed it brand new yesterday.  Boston?  Not so much.  You basically just lie your kid down on the pavement to change a diaper.  There are no public bathrooms -- and even if there were -- you sure as hell wouldn't want to go in one alone without a firearm or a hazmat suit let alone bring your precious baby in there and then take her pants off.  Forget about it.  Since half the population of this town is traveling around with like 6 kids under 6 -- they got this shit down to a science.  

3.  Makes ordering alcohol fun again.  Because Mormon's don't drink, swear, or do much of anything naughty really -- you kinda feel like a badass out here just for ordering a beer let alone using a shopping cart (thank you very much) when you make your run to the state liquor store (WITH THE KIDS mind you :) -- it's like being in one of those western movies where you walk into the Cantina and all of the local cowboys turn around to get a look at the stranger in the doorway and in one glance they can just tell you're a total badass who means business.  Going to the liquor store in Southie is about as exciting as taking the trash out it's so much a part of everyone's daily routine.  Here?  I feel like I'm doing something totally illegal every time I acquire alcohol.  And I like that.

4.  Conservative as hell.  Here's where you might want to just keep your conversations to a minimum and go along to get along.  I mean, I got mad respect for the kid friendly environment and super props to the changing table situation -- so I don't want to piss anyone off with my swearing or my stance on gay marriage.  It is beyond strange to walk into a bookstore and see Bill O'Reilly and Rush Limbaugh books fill the entire Best Seller section.  Even stranger when my parents little gated community holds its home owners potluck and the sundried tomato and feta past salad dish they brought with them was frowned upon and viewed as a little "racy" given the slew of jello molds and marshmallow salads that covered the buffet table.  Let alone that my mother was making small talk about how she's interested in joining the local democratic city committee.  I think she would be their third member.  But hey, when your main goal is to escape cold weather and have a place to go to with clear blue skies and warm temps with tons to do with the kids -- anyone can stumble through a few awkward "wouldn't the country have been better off with Mitt Romney as president" conversations.   

5.  Public facilities that make the Ritz in Boston look like a dump. The Community Center here might as well be a freakin high class water park and it costs like 50 cents to join.  Who knew that these remote, conservative, religious towns in the middle of nowhere had the best public facilities known to man.  The community center here is a SAHM's wet dream.  I'll let a picture of the pool speak for itself.  And what's even more insane is how CHEAP it is....anything remotely of this caliber in Boston would literally cost hundreds of dollars to join.  I'm usually here for six weeks each year.  What does that cost me?  $30 bucks.  TOTAL.  Oh no wait, I have to pay $2 a kid if I want to drop them off in the daycare center for TWO WHOLE HOURS while I spin, take a yoga class, or who am I kidding -- take a 45 minute shower if I want to and not bother to workout at all.  I'm sorry, but this kind of celebrity lifestyle simply does not exist on the mean streets of Boston.  I mean, unless you have Kennedy amounts of money at your disposal.  Amazing.  We are at the community center, no lie, six days a week.....but who's counting. 

So there you have it.  Mormonland for the non-Mormon.  It's a beautiful thing.  So, the next time you're planning a trip to Disneyland or renting a beach house in Florida -- just Google remote, religious, cheap, kid friendly, publicly funded kick ass community center destinations and see what comes up.  It might surprise you.

PS: I am definitely warming up to the idea of this multiple wives thing because let me tell you, it sounds awful tempting to have a few more adult women in the house to help me carry the load around here.  In that sense?  I have NO problem adding people to my marriage.  I would be lying if I didn't admit to the fact that I could sure use the help.  The crazy hair and the potato sack clothing?  Not really my thing.  But I traded in my modeling career and my sense of dignity a long time ago -- so if I can get any of the ladies out here to move back to Boston with me....I might just be bringing a little bit of Mormonland home with me this year.