Thursday, March 15, 2012

Lucas' 1st Birthday

(This will be a long introduction so please bear with me - I promise it's worth it!)

Today is baby Lucas' very first birthday. A babies first birthday is always a big event in any family, and even more if the baby is the first-born and only child like Lucas is. It's always so exciting for the parents to see their baby turn one and watch him grow into a toddler. This is especially true for Stephen and Michelle, Lucas' parents. You see, Lucas was born with only half a heart. Lucas was born with Hypoplastic Left Heart Syndrome (HLHS), meaning that the left side of his heart never developed in utero and so he is only living on the right side of his heart. So far Lucas has had two open-heart surgeries, several closed-heart surgeries, and WAY too many procedures and hospitalizations to count.

And this is only the beginning.

There is at least one more surgery planned for Lucas, the Fontan, sometime over the next 1-2 years. And that's just what is planned. Odds are that Lucas will have more surgeries between now and the Fontan, and after; and when he makes it to his teenage/adult years the odds are that he will require a heart transplant.

So needless to say, Lucas making it to ONE whole year old is a huge milestone for him and his amazing parents. I did this photo session last night and as I was talking to Michelle, she was saying how she didn't mind that Lucas was going to be hospitalized for his first birthday. It's definitely not ideal, but she doesn't mind. Why? Because Lucas is still ALIVE. Lucas has been through SO much during his first year of life that several times Michelle and Stephen didn't think Lucas would make it to this milestone. They had faith he would, but nothing was sure... yet here he is. So, like Michelle said, it doesn't matter that Lucas is hospitalized - he's alive. And if Lucas being hospitalized means that he can get better then it's worth it.

But that's as good as things can get... "better." There is no cure for HLHS or any other congenital heart defect (CHD). I'm 21 years old myself and I have several CHD's and I'm living proof that there's no cure. Things *can* get better, but there's no cure. Michelle and Stephen are painfully aware of that, and so they celebrate every single milestone that Lucas reaches. That's why this photo session was SO important to them - even if it was done at the hospital.

Before I get into the pictures let me just explain one more thing: Lucas has been hospitalized at the Mattel Children's Hospital (Ronald Reagan UCLA Medical Center - which is where I've had all my surgeries and procedures and hospitalizations) and just the day before yesterday (March 13) Lucas had a closed-heart surgery. So this photo shoot took place about 24 hours after his surgery... but you'd never know! Also, about 15 minutes before we started our session they started Lucas on a blood transfusion, and that was happening throughout our whole session. But you'd never know looking at Lucas :-) So, enough talking! Here are a ton of pictures, enjoy! :-)

Meet gorgeous Baby Lucas.

What an absolutely beautiful child. He's so handsome, just look at those baby lashes!

And he's also such a happy baby :-) Again, this was just 24 hours after surgery yet here he is, being silly and having fun :-)

Michelle made this poster for today while Lucas was in surgery the day before yesterday. Well done Michelle, it's perfect! :-)

Just in case you didn't catch a glimpse of Lucas' scar in the previous photos, here is one up close. What an amazingly brave little boy. He's so inspiring, even to an older CHDer like me.

Once we were sure that everything was good with Lucas' blood transfusion and he wasn't having any reaction to it Stephen got him out of his crib and it was time to play! I am in love with these daddy-son shots.

And here's the first family picture that I got. LOVE. That's what I see in the photo - love. Michelle and Stephen look at Lucas with such awe, it's so beautiful to witness.

This little boy is SO loved.

Daddy and Mommy kisses for Lucas. There's no better birthday gift that love and kisses - and Lucas has them all.

What a beautiful family!

Some of my favorites! Lucas thought it was so great that his parents were kissing, and he "helped" them by pushing their heads together! Seriously, that's the cutest thing I've ever seen a one year-old do!

Mommy and Lucas. Michelle - but are beautiful! It's no wonder Lucas is such a gorgeous baby, with you and Stephen as his parents :-)

Michelle and Lucas dancing. I didn't think much of this picture when I took it as I was too busy smiling while seeing Lucas dance, but as I was editing I found myself imagining this being two decades later... It's Lucas' wedding and Michelle is dancing with her boy.... I hope and pray that this moment happens for you, Michelle, I really do.

What a beautiful boy. I still can't get over how gorgeous he is.

Though this isn't a very good picture in itself, I love what it shows. Lucas had SO many wires hanging from his body, and if Michelle or Stephen weren't holding them he'd get tangled. Michelle and Stephen have to do so much for Lucas - even just for Lucas to be able to play. But see Michelle's smile? Seeing her boy playing and happy makes all her hard work worth it :-)

Then it was naptime for Lucas, so Stephen made sure to kiss him goodnight :-)

And after just a few minutes he was down. Lucas seriously sleeps in the cutest newborn positions!

Such a doll. Look at those smooched lips and beautiful lashes! AAAAND.... Notice Lucas' cheeks here. Scroll up a bit and look at his cheeks, then look at him here. See a difference? Rosy cheeks! His blood transfusion was definitely doing the trick :-)

While Lucas slept I tried to get some detail shots. There was no way I could photograph his baby hands because he was sleeping on top of them, but I did get his baby feet :-) I also want to explain a little bit here. See that light-up wire on Lucas' big toe? That's to monitor his oxygen levels, it's a pulse-ox monitor. All it does is measure how much oxygen is in Lucas' blood. Did you know that doing this non-invasive, super-easy, extremely-quick test can diagnose CHD's? Many babies are diagnosed in utero during ultrasounds, but not all babies get diagnosed. Some are diagnosed at birth, and that's fine too. But unfortunately, SO many babies aren't diagnosed before they're discharged, and they go home with broken hearts and so many of them die... This was almost the case for Lucas. Lucas wasn't diagnosed in utero or at birth. In fact, Stephen and Michelle were told that Lucas was a perfectly healthy baby. So Stephen and Michelle took their "healthy baby" home and 22 days later they almost lost him. Lucas was in severe heart failure when he was finally diagnosed with HLHS. Here's another fact: most HLHS babies have their first surgery within the first week of life, and they're kept alive that first week or so before their surgeries by keeping their PDA open with meds. Lucas had NONE of this. The fact that Lucas survived to 22 days is absolutely amazing. Lucas is, without a shred of a doubt, a miracle baby. He survived the un-survivable as a newborn.

Here are some artistic shots of Lucas' receiving some meds (left) and blood transfusion (right).

And some more artistic shots. These were Michelle's idea, and I'm SO glad she suggested it! This is Lucas' world: toys and toys and toys (after all, he is a baby boy :-) and wires and wires and wires.

This is Lucas' world. This is his normalcy.

I love this shot because it shows just how tiny Lucas is.

Lucas has been through SO much in this past year....

...and so have Stephen and Michelle. They are truly inspirational people, as individuals and as a family. I truly admire their courage.

Just before I left Lucas woke up so I got to take some pictures of his bed-head-hair. CUTEST HAIR EVER! :-)

And then it was "that" time of the night: wound dressing change. It was so incredible sad to watch Lucas have to go through this... No baby should have to go through this, and no parents should have to hold down their son against his will for a painful procedure....

But this is Stephen, Michelle and Lucas' world. This is what they go through every single day.

I realize this blog post is very long and perhaps not your average photo session, but that's okay because this isn't your average family. This is a family that has been through the worst of the worst. I really hope that my blog readers actually read this and educated themselves a little on what CHD's are, what HLHS is and how it affects children and drags families through the worst of times.

Stephen and Michelle: what can I say? It really is an understatement to say that it was an honor to meet you guys, talk with you about life, your journey and all the personal topics we went into it. I'm so very glad that we met (thank you Sara for introducing us, you're the best and I can't wait to do your beautiful families session!) and I cannot wait to go out to Santa Barbara with you to do another session once you adorable little man is home, and I look forward to continuing to document your journey.

And of course....

Happy 1st Birthday, Lucas!! I wish you nothing but the very best, buddy. I hope and pray that you overcome whatever is thrown at you. With your courage and stubbornness I'm sure that you will. Never change, little man. -Love, Brenda