Monday, February 21, 2011

Happy Norwood-iversary

One year ago today, our baby boy underwent the most complex surgery in the pediatric cardiothorasic field. We kept the blog updated that day. These were the updates from that day:

9:26am And so it begins
They just took Bodie back for surgery. Hands down hardest thing I've ever experienced as a parent is to let your child go knowing it may be the last time you see him alive. Hoping and praying for the best, but finding it hard to stay strong at the moment. Please stay strong for us.
Prep should take about 1 and 1/2 hours, the actual surgery about 45 min and then another hour and a half or so to stabilize and close him. So, we probably won't have an update for a while.
Please, please, please pray!

10:14am No update, but a thank you
No updates yet, but I just wanted to let you know how much better we're feeling already. I know it's 100% because of the infusion of prayer we've gotten in the last hour. So thank you!!! Please keep praying that Jesus is watching over our sweet little boy!

11:49am Update
Just finishing up the surgery - his heart is beating now and he's off bypass! PRAISE GOD!!!

3:38pm Bodie is Stable!
Dusk and I just left the hospital. Today went as well as it could have - praise God! Bodie's back in the CTICU on more meds than I can count, lots of tubes, wires and catheters, a ventilator and under heavy sedation - all to be expected. The next 24-48 hours are all about making sure complications are avoided. Then, they start thinking about weaning him off the vent, sedation, etc. And see truly how well his little body does. So, thank you for all of your prayers - and please keep them coming!!! He'll continue to need them, especially during this critical period!
- Dusk and Amy

This was our sweet boy, one year ago today...

And by the grace of God, this was our sweet boy TODAY...

Could we possibly be any more grateful or blessed? NO. And on that note, I thought it was time to share some pictures from his birthday festivities this past weekend.

But first, a little background. The theme for the party was Bumblebees. Bumblebees anatomically should not be able to fly. Their bodies are too big and their wings are too small. And yet, they completely defy the odds to soar. How perfectly does that describe our little miracle?

The invitations for the party (thank you Sara Seipler, you are AMAZING!!!)

Favors! (props to fellow heart mom Kathy for the favor ideas!)
Hand sanitizer

Thank-you notes Sixlets (mini-chocolate candy) in honey bears
Most. Amazing. Cake. Ever.
Provided by Icing Smiles, a nonprofit organization that links bakers across the country with the families of critically ill children. The bakers make specialty cakes for free for the children and their siblings. If your child is in the hospital, they'll even deliver it for free! Icing Smiles connected us with the Cake Divas, in Culver City. Absolutely incredible cake!!!

Bodie checking out his cake, ready to dive right in!

Bodie and his girlfriend, fellow CHD warrior, Barbara Ann, aka "Babs." Babs and Bodie were roommates in the CTICU after his first surgery. Babs is amazing. Just a bit younger than Bodie and already WALKING! She was doing her thing, showing off, crawling and walking everywhere and Bodie decided he needed to step up his game (he heard there's a contest for her little heart), so, since then, has been crawling EVERYWHERE! Wahoo! No more using his shirts to mop up my floors! Thank you Babs!

Snuggling with Auntie Jen (one of the first times ever he's let a non-relative hold him without losing his cookies!)
The heart momma's and babes in attendance: Bodie (HLHS, 1 year), Townes (HLHS, 2 years), Babs (Valve repair, 1 year) (believe it or not, this was the best pic we got of all 6 of us!)
As you can see, the pic with just the kiddos didn't fare much better...
Bodie was obsessed with the darling bumblebee balloon that Sara (Townes's mama) brought him:
The whole fam with the amazing cake
Trying out the cake (was there any doubt this kid was going to like his cake after his shenanigans earlier this week?) (You'll notice that mommy wisened up this time around and made his personal cake vanilla - no more chocolate clean-up!)
We mentioned the kid likes cake, right? Ah, the sheer excitement...

Ahem, he had a hard time getting through the frosting, so he just gave up, picked up the whole cake and started eating - hilarious!!!

He couldn't figure out what the big deal was - isn't that what you're supposed to do with a cake?
Although Saturday was a bittersweet day (I apologize for taking a couple of days to get the pics up; honestly, I have had a very hard time dealing with Travis's passing and just haven't been able to bring myself to post the pictures), we were so grateful for the past year that we've had with Bodie and pray for many, many more! Thank you to all of you that have prayed for Bodie and our entire family during this past year - we love you all!


Saturday, February 19, 2011

Too much bitter...not enough sweet

Today was such a bittersweet day. So sweet, as we celebrated the miracle of Bodie's first birthday, surrounded by friends and family (pictures of that tomorrow, I promise). But far too bitter, as we learned just hours before Bodie's party that our sweet friend Travis was taken home to Jesus. My heart has just been aching all day. I have to be honest. There's a lot of loss in the heart community. It's a hard place to be a member. So many of the losses are hard because they remind you of the fragility of your own child and you walk away thinking "that could be my child." And you go hug your heart child a little tighter and thank Jesus a little more than usual.

But some losses are just harder to process. This time, I'm not grieving because it makes the fragility of Bodie's condition all the more real. I'm grieving, aching so deeply, because it was Travis. Sweet, cheeky, beautiful Travis. And it's his incredible mom Nicole. And his amazing father Roger. It doesn't seem possible. Less than a week ago, he was all smiles and energy. Bodie and Travis have played together. His smile lit up the room. We often talk about Bodie's silly personality, but Travis took the cake. Absolute light and sweetness emanated from that child. His laughter was so sweet. When we saw them in December, he had gotten a BBQ set for Christmas, and was wearing his little apron and chef hat and pretending to flip burgers. Beyond adorable. My heart is broken for this loss. Just truly broken. Please, please pray for Nicole, Roger and Travis's sweet little 2 month old sister Addison. Pray for comfort for them as they process a loss no family should ever have to process.

Fly high into the arms of Jesus, sweet Travis.


Prayers for Travis

Tonight, I'd like to ask you to stop what you're doing to send up a specific prayer for our heart buddy Travis.

(Bodie and I with Travis and his amazing heart mommy Nicole)

Travis, like Bodie, has HLHS. He is 16 months old. In addition to HLHS, Travis has a narrowing in his aorta. He went in yesterday for open heart surgery to repair that narrowing. Today, he went into cardiac arrest, required 2 hours of CPR and is now on ECMO. PLEASE pray that he tolerates ECMO well, there is no damage to his brain or other organs from the extended CPR and that his heart is able to rest and recharge so Travis can continue being the little warrior he is and able to fight hard through this -- we love you Travis!

Dicarlo Family Blog


Friday, February 18, 2011

Cardiology's all in your perspective

Today, we had our monthly cardiologist visit. From my perspective, it went WONDERFULLY. All news was good! He is now measuring 30in (the exact same length Sierra was at a year, ironically) (over the 50 percentile) and 20lb8oz (he's now in the 25% percentile!). Dr. Kim actually had to stop and make sure she plotted him right, because he's never been that high - I think he was only around 10% at his last appointment! SO exciting! His echo looked great as well: his heart function was the BEST she's ever seen it (!!!), his triscupid valve leakage was still minimal (you expect a bit with single ventricles, but you want it to stay as minimal as possible) and his Glenn physiology still looks good! He was satting at 76, but considering he'd been screaming pretty much nonstop (more on that in a second), I was thrilled he was even satting that high! All in all, mommy was VERY happy with today's appointment.

I sense that Bodie, on the other hand, might not paint such a rosy picture of today's events. If you asked him how things went down, I suspect he might look at you like this...

and give you his rendition of today's appointment:
"Sleeping peacefully in car. Mommy waking me up. WHAT? Never supposed to wake a sleeping baby. Smile at nice favorite lady in recept-WAIT A MINUTE! WHO is that? Not our favorite lady. Never mind. No smiles for her. Cry to get out of stroller. Cry to get out of mommy's arms. Cry to get back into mommy's arms. Want a bottle. No wait. Never mind. Don't want a bottle. Go back to exam room. Get measured. See ekg machine. Scream. Scream some more. Do ekg. Scream at tech waiving toys in my face. I DON'T WANT to calm down. Stop waving toys at me. I HATE this place. Scream some more. Get blood pressure cuffs on. I HATE those things. Really screaming now. Holding breath as much as humanly possible. Take those sats, nurse/tech lady!!! How do you like those low 60's sats? That'll teach you to mess with me. Cry some more. Hold breath some more. Scream and try to lunge off the scale while being weighed. I HATE doctors and nurses. FINALLY, she leaves. In room with mommy all alone now. All smiles. Play with mommy. Knock on door. NO!!!! Dr. Kim in room. Ah, she's alright - but nobody touches me today. Try to crawl back inside mommy to get away from this place. Dr. Kim and mommy have a nice chat. In mommy's lap. Out of mommy's lap. Try to stand up. No, don't want to. Yes, stand. No, crawl away again. Dr. Kim leaves. YES - alone with mommy again! Play some more. Knock on door. NO!!!! NEW, UNFAMILIAR echo tech! Back to echo room. Scream. Wriggle. Scream some more. Get gel everywhere. Turn off Elmo - I will NOT be distracted today! Get that sucker out of my face. I just want to scream! I HATE echos. Get gel all over mommy. Dr. Kim comes in to help echo tech get the 3 pictures she actually needs. Finally done. HA - I showed her! Back in exam room. Happily playing ALONE with mommy. Knock on door. NO!!!! Just Dr. Kim saying echo looks good. Ok. She gives mommy a birthday card for me. Ok, we love Dr. Kim. But SO glad to be leaving the office!"

Yes, it appears that our sweet well-behaved boy has finally developed a full-fledged fear of medical personnel. The first appointment we've had like this - I'm afraid it's a precursor to our appointments for the next year at least! But, truly, I'll take nonstop screaming anyday if we get the kind of doctor's report we got today. :-)


Wednesday, February 16, 2011

"Let them eat cake"

So you know how some kids don't really know what to do with the first birthday cake and end up not really eating much of it? Yeah, so Bodie's not one of those kids...

He went from this...

to this...
in about 15 minutes flat. How you might ask? Here's how...

A little skeptical at first...

"Ewwwww...mommy, I don't like my hands being dirty like this!" (as an aside, that's probably the point we should have taken the cake away and given him birthday graham crackers instead)

"Well, wait a minute, let me just taste it..."

"Holy crap, that was good! Let me get some more!"

"Oh, what the heck, I might as well double fist it"

Making VERY quick work of the cake
(I should interject here and note that this is about the time where, in true Bodie fashion, he shoved his mouth waaaaay too full of cake, coughed and gagged a bit and then threw up. Lucky for us (and him), we were prepared and caught it all in a towel, which enabled him, again, in true Bodie fashion, to shove the towel out of the way as soon as he was done...and dig right back into the cake. I can only assume he was relieved to get some of his dinner out of the way to make more room for cake.)

"What, like you thought a little mid-dessert barf was going to slow me down?"

And...we start rubbing the eyes...
for the complete effect...
(by the way, he was giving me this look because I took the cake away. HE didn't think he was done yet - I thought that much chocolate that close to bedtime is what they refer to in parenting circles as a "rookie mistake")

Like we said earlier today, Bodie is not one to back down from a fight...I'm afraid the cake didn't stand a chance.
I have to say, when you dream about your child's first birthday, this truly is the stuff you dream of (ok, well, maybe minus the barf, but you get the picture). It was everything we could have asked for. He was SO excited, it was contagious. We could not help but laugh at him...and praise God for our sweet silly son!!!

P.S. Check out today - the background image is of Bodie, CA!!! See, everyone wants to get into celebrating the birthday of our little miracle! (ok, maybe that's not exactly how it went down, but you know that's how WE'LL remember it!)

Happy Birthday, our sweet warrior

Dearest Bodie,

One year ago today, we were scared. We didn’t know what to expect. We knew we had a baby we loved. We knew that baby had a serious heart defect. We knew that baby would be fighting for his or her life from the moment he or she left mommy’s tummy. We didn’t know how long that fight would last. We didn’t know if you’d be strong enough for surgery…or whether you’d make it through surgery…or whether we’d ever hold you…or bring you home…or introduce you to your sister...or watch you learn to walk or talk...or celebrate your first birthday with you. We knew we had to trust God to take care of you and our family…and that’s about all we knew.

But one year ago today, we didn’t know YOU. Sweet, determined, stubborn, able to overcome incredible odds, YOU. Oh Bodie, you are such a fighter. We should have known how determined you’d be. Even in the womb, you would constantly shove your little knee into mommy’s side. Mommy would nudge it back into place and you would shove it right back out. And so it went, over and over again. Many times a day. Mommy vs. Baby. As we said, we should have known then that you wouldn’t back down from a fight.

And you have faced one heck of a fight this past year. 3 open heart surgeries, 2 cardiac catheterizations, 100 days in Intensive Care Units and another 36 spent on the regular pediatric cardiac floor, more appointments with doctors, therapists and your cardiologist than we can count, well baby checks and vaccinations, monthly Synergis shots, paraflu and c-diff (at the same time, no less) and let’s not forget MRSA in your bloodstream, lots of teething and little colds along the way. But through it all? Smiles, giggles, learning to roll, then crawl, then cruise. Lots of hugs, waves, high-fives and kisses. A smile that melts your mama’s soul. A joy for life that surpasses what we could ever have expected for you. Oh, we could NOT be prouder of you, our sweet little warrior.

We know your fight is far from over. We know you still have at least one open heart surgery, pacemaker maintenance for life, and possibly a heart transplant someday. But today, on your first birthday, we rejoice in the normalcy of your life right now. We rejoice that we can worry about you eating cheerios off the floor, instead of catching illness in a hospital somewhere. We rejoice that we can be annoyed with your separation anxiety because mama’s in the kitchen and you’re in the living room with sissy, instead of because mama’s at home and you’re in a hospital bed somewhere. We rejoice because you are constantly getting into things you shouldn’t (mama’s Tupperware and sissy’s markers are your favorites) and because you giggle uncontrollably when you’re crawling into the bathroom, because you know you’re not supposed to be there. We rejoice because you hate dirty diapers, but hate being put on your back to have them changed even more (oh, that you could figure out a way for mama to change your diaper without actually changing it!). We rejoice that we can enjoy all of these normal things. Life is so good right now and we are forever grateful for that. We have enormous hope for your future, sweet boy. We hope and pray for many, many more birthdays with you, celebrating the miracle that you are!

Most of all, we rejoice in you. God has given us such a gift in you. You have taught us to slow down and appreciate life, the wonder that is raising little ones. We love you so much and you are our brave little hero. Happy 1st birthday, our little half-hearted miracle!!!

We love you!
Mommy and Daddy


Friday, February 11, 2011

Just because

Just thought I'd post a few pics I've taken of Bodie this week, being, well, the happy silly self he has become lately. His separation anxiety seems to have abated somewhat thankfully and he is happier than we have seen him in months! Praise God!!!

and...we're CRAWLING! Just started doing it today, while his therapist was here! Still just a few tentative movements forward, before he drops down to army crawling and takes off...but it's a great start! SO proud of him!

Nothing like the first pair of shoes to make your baby look like a little BOY! (no, he really didn't need them yet - but he is cruising on furniture these days, and, let's face it, they were just too stinking cute to pass up)

Konked out in mommy's I love these little cheeks!

You can say that AGAIN...


Wednesday, February 9, 2011

Why am I fired up about CHD Awareness?

I know a lot of you reading this are probably wondering "why is Amy STILL going on about CHD awareness and research? I mean, Bodie had a horrible start, but he's doing great now. Why can't she just let it rest and get on with her life?" (it's ok if you're thinking this - I'm sure you're not the only one)

Here's why...

I cry out for CHD research because my son's life depends on advances in medical technology. Currently, 75% of HLHS kids will make it to the age of FIVE (and that's the most positive statistic I've read - other stats say it's closer to 60 or 65%). How would you feel if you looked at your baby, knowing those odds? Wouldn't you fight with everything you had to improve those odds? Wouldn't you pour your heart and soul into asking everyone you knew to pay attention to CHD's and fund CHD research?

I cry out for CHD research because my son will never be healed. He will always have a CHD. His BEST case scenario is at least 1 more open heart surgery and pacemaker maintenance for the rest of his life. He will always either have a half a functioning heart (the half that was never intended to pump blood to the body, by the way) that's been rewired to work as a whole heart the best it can. Or he'll have someone else's heart beating inside his body. At the moment, those are our only options. If and when the day comes that he needs a transplant, it will bring a whole host of issues, including forever worrying about rejection and the possibility of future transplants down the road. He will always have exercise limitations of some sort. The extent of those limitations will be up to his heart, his lungs and his body, but at the very least, we know that he likely won't be permitted to play contact sports.

I cry out for CHD research because, when my son is a teenager (God willing, he will live that long), instead of assuming he will live forever like most teens do, he'll have to face his own mortality at the same time as he's growing into an adult. How do you do that? I don't know. The oldest people with his condition are in their twenties and there's only a handful of them. Dusk and I struggle with how we'll help Bodie at that point - we know what it's like to raise a child with a "questionable" life expectancy, but we can't know what it's like to be the one actually living with that questionable life expectancy. How do you find a spouse who loves you in spite of a questionable future? Of course, no one is guaranteed a specific future, but it's just human nature to take our best odds, right? Don't get me wrong: we will do EVERYTHING in our power to raise our son to live a normal life, and we have every reason to believe he will fall on the favorable side of these odds, that he'll lead a happy, normal life. We will teach him about God's plan for him, and encourage Bodie to use his journey how he feels called to use it. And so I shove these worries to the back of my mind...but the realities are still there.

I cry out for CHD research because it's not just about MY son. Truly, Bodie is doing incredible right now. But far too many babies are lost every year to CHD's. CHD's are the #1 birth defect and the #1 cause of infant death before the age of 1. 4,000 babies will not live to see their 1st birthday from CHD's alone this year. CHD's can happen to anyone. Yes, we have a history of heart issues on Dusk's side of the family. But the fact is, I have met more families affected by CHD's with absolutely no cardiac family history than I have met with a cardiac family history. Cardiac babies can be born to healthy parents. Parents who have NO inkling what a CHD even is.

I cry out for CHD research because, like so many CHD's, no one knows what causes HLHS. How the heck are they supposed to figure out how best to treat it if they can't even figure out what causes it? I see so much money going to pediatric cancer research, and cancer is horrible, don't get me wrong (my mom is a breast and kidney cancer survivor, so believe me, I am all about cancer research as well), but CHD's kill almost twice as many babies every year as all pediatric cancers combined, yet pediatric cancer gets 5x the funding of CHD's? What the what??? It doesn't make any sense.

Most of all, I cry out for CHD research, because treatment for CHD's has come SO FAR in the past 20 years. Praise God that my son was born in 2010, not 1980 or 1970. But in 2010. A time when we can now say 75% of kids with his defect make it to the age of 5. He is truly on the cutting edge of medical technology. And I am so grateful for that. But I am greedy. I'm his mother. He's my son. I want more for him. I want the statistic to be 100%. I want to rest in the blessed assurance of knowing my son has a really great chance of making it to adulthood and living a normal life. And the more money that goes to CHD research, the greater chance we have of that happening.

So why am I so fired up about CHD awareness? I can't help it. It's in my blood now. I hope maybe it'll be in yours a little bit, too - and you'll be inspired to make a donation to the Children's Heart Foundation, one of the few organizations that gives a substantial amount of money to CHD research!

Tuesday, February 8, 2011

Sharing Bodie's Story, Part II

About a month ago, I had the opportunity to be interviewed for The CHD Show with Jim Ferretti. The CHD show is a weekly Internet Radio Podcast. Each week Jim sits down with a survivor, medical professional, or parent to discuss their story about Congenital Heart Disease. I had an amazing opportunity to share Bodie's story, and talk to Jim about how this journey has affected our lives, our family and outlook on life in general. To listen to my interview, go to The CHD Show and select the third one down: "January 6, 2011 - Amy Bennett discusses her 11 month old son Bodie born with HLHS, a form of Congenital Heart Disease." Enjoy this little window into our world!


Monday, February 7, 2011

My Heart Beats Red for Bodie

Thank you SO MUCH to everyone for wearing RED for Bodie on Friday!!! We got so many great pics emailed to us - it's so neat to see where all of our followers and prayer warriors are from! We cannot tell you how it humbled us and just made our hearts swell to hear that so many of you not only took time out of your busy schedules to celebrate Bodie on Friday, but also took the time to email and let me know. :-) What was most touching is that there were people who sent me pictures that we've never even met in person! Thank you so much everyone!

Without further we are...with our hearts beating red for Bodie...

Us out at dinner tonight, celebrating the fact that the flu, for the most part, has moved on (for those interested, yes, it did turn out to be Influenza - YUCK!, and putting Sierra on Tamiflu pretty much got rid of her symptoms in about 24 hours and Bodie and I were able to avoid it altogether, thank God, by taking Tamiflu prophylatically - Daddy, unfortunately, was too far into his symptoms for Tamiflu to help, so he's still suffering through lingering symptoms):

And Bodie fans!!!

Jill Woods, Salt Lake City, UT

Noah & Zoe Schultz (kiddos of awesome parents Jeff & Kellie), Southern California
Jackie & Hayden (fellow heart warrior!) Cech, Nebraska

Marilyn Banducci, Arroyo Grande, CA
"Gigi" Nancy Gerrish, Nipomo, CA
Brian, Anda & Montgomery Palmore, Austin, TX (formerly of Southern California!)

"Popo" Alan & Grandma Jan, Reno, NV

Cousins Hannah & Amelia Bennett, Denver, CO
(is this not the cutest sign EVER???)

Elliana, Jackson, Layla & Savannah Sievers, Lyons, CO
Ned, Mirabella and Milosh (fellow heart warrior!) Chandler
(yesterday was Milosh's 1st birthday - and today is Mirabella's birthday!)

Sierra's BFF Sofia and her awesome mom Valerie and dad Rik Loyola,
Los Angeles, CA

Sierra's beloved "Teacher Juju" and her sweet Elijah Hernandez,
Los Angeles, CA

Erin, Grant, Levi and Annette Fuller, Seattle, CA
(formerly of Southern California -
and truthfully, we're still trying to convince them to move back)!

Jeremiah, Riley and Hailey Welty, Los Angeles, CA (Hailey is one of Bodie's birth buddies - they were born just 2 days apart!)

Colin, Gina and Dylan Watanabe, Pasadena, CA

There were also many of you who told me you wore red, but forgot to take a picture - thank you SO MUCH for thinking of Bodie!!!