Sunday, September 30, 2012

Rethinking the day that changed everything...Three years later

On October 1, 2009, we first heard the words "your baby has a severe congenital heart defect." Like so many parents, the news was received at our structural ultrasound, when I was 17 weeks pregnant. The experience was traumatic, to say the least, not the least of which was because, save for our incredible cardiologist (who by the grace of God happened to be in the office that day, doing prenatal consultations), the response from the medical team was largely negative, with most surprised that we were not choosing to terminate. Although they were compassionate, the overall feeling that we were given was that our child was in grave danger and would likely not make it to term - and, if the baby did, would not have a good prognosis. It often felt as though we were fighting our medical team to stay positive. The frustrating thing to me is that I now know that there is a great deal of HOPE with these kids, and none of that hope was conveyed to me by the medical team (again, save for the cardiologist).

Every year, on October 1, I send our perinatalogist a letter, just wanting to show him that kids with HLHS can do well and thrive. You can find my 1-year letter here and my 2-year letter here. This year, on the 3-year anniversary, I am once again taking the opportunity to reflect and share Bodie's story with him. Here is my letter...


October 1, 2012

Dear Dr. Rotmensch,

This is Ella May Beckstead. She has HLHS, just like Bodie. She is one of “ours,” a family that has been touched by Sisters by Heart. Last weekend, Bodie and I watched her celebrate her first birthday, and rejoiced in the moment.

Three years ago today, the course of my life was changed in a moment, to forever after be split into the before and the after. Before you told me my unborn baby had a congenital heart defect so severe that only a small percentage of the most skilled surgeons in the country will even attempt the complex surgical repair needed. Before I knew my unborn child would fight for his life almost immediately. Before you gave me little to no hope for my unborn child’s life. Just, well, before.

On the first anniversary of Bodie’s diagnosis, I was sad. Sad that you didn’t have more faith in my son and his fight to live, more faith in my ability to fight for a medically fragile child. Sad that you would suggest termination.

On the second anniversary of Bodie’s diagnosis, the further I got into the heart community and the more successful HLHS cases I saw, that sadness had turned to anger. Anger, I suppose, that you should have “known better.” Anger that, as the head of a major prenatal diagnosis center, you should have known that palliated HLHS is not a death sentence, that there is a great deal of hope for these children, that the advances in this medical field are staggering.

But, today, on the third anniversary of his diagnosis, I get it. I understand that it wasn’t ever about my son, or about the moment the bottom dropped out of my world. It was about my family’s opportunity to be a part of something so much bigger than that. It was about Ella, and the more than 300 other families that have been touched by Sisters by Heart in the last 2 years. Because, Dr. Rotmensch, Sisters by Heart was borne largely out of my prenatal diagnosis experience, out of my desire that no family ever be given an HLHS diagnosis and leave without HOPE for their child, for their family. I was incredibly lucky that Dr. Kim happened to be in the office on the day I received my diagnosis. Not every parent is as lucky to have a Dr. Kim waiting in the wings, and had I left after only seeing you, I would have left under the impression that my child had no hope for a normal life. No family should ever experience that, all of the fear attendant to an HLHS diagnosis, but none of the hope, none of the knowledge that many of these kids go on to live very typical, happy, lives.  

HLHS sucks. It is a horrible defect, and I would trade my heart for my son’s in a second. But there are so many kids, like Bodie and like Ella, who aren’t just surviving, but are thriving. The Bodies and the Ellas of this world aren’t just defying statistics, they’re redefining them.

Bodie is doing incredible, by the way. We still have his Fontan surgery ahead of us, and it scares the daylights out of me, to be honest. But today, he’s doing fantastic. He’s just like any other 2½ year-old. He knows all the words to his favorite praise songs (and is almost always singing them!).  He’s obsessed with cars, trucks and trains. He knows his ABC’s, he can count to 10 (and include almost all the numbers to get there! J), he’s potty trained and he’s smarter than a whip. He’s inquisitive, he’s sweet, he’s stubborn and he’s funny. His ½ a heart does NOT make the rules for him. HE makes the rules. This past year, we did charity events, we spent 10 days in Tahoe, we flew to South Carolina (and got to go into the cockpit on the way back) – and just generally LIVED our lives!!!
Bodie and Ella are far from alone. The other kids I include in this letter every year? Although some have had some tough post-Fontan complications, most are still kicking HLHS butt.
Addison, almost 4 (post-transplant)

Townsend, almost 4 (post-Fontan)

Grace, 3 (post-Glenn)

Aly-Jean, 3 (post-Fontan)

Jake, 2½ (post-Glenn)

Olivia, 2½ (post-Fontan)

Zoe, 2 (post-Glenn)

Dr. Rotmensch, the latest statistics are showing that 60-75% of HLHSers are making it to 5 years old without needing a transplant (and the numbers are as high as 80% at higher volume centers). The advances currently being made in stem cell and bone marrow treatment for congenital heart defects are amazing. This field has moved at the speed of light in the past decade, and, by all accounts, it appears we’re just getting started. So, yes, HLHS sucks. It’s a terrible diagnosis and, as long as it still takes one child from their mother’s arms, research is not done.  Yes, parents absolutely need to know how devastating this diagnosis is, how it will change their lives forever and rob them of any sense of security they felt over any of their children’s futures. But, please, also take a few moments to remember the Bodies, the Ellas, the Olivias, the Towneses, the Addies, the Aly-Jeans, the Graces, the Jacobs and the Zoes of the CHD world. And please, remember Sisters by Heart and the HOPE we bring.

You may feel that recommending the termination of an HLHS child is the right thing to do, but I ask that you also think about the many blessings you are terminating, along with their unborn child – a chance to learn what life is all about, the opportunity to live in the present moment on a daily basis, the insights that both heartache and pure love can bring, and the inspiration our HLHS children bring to people all over the world.

Thank you,

Dusk, Amy, Sierra & Bodie Bennett


Saturday, September 29, 2012

Walking on Sunshine...

Today, I made the spur of the moment decision to do the American Heart Association Walk with the kids (I say "spur of the moment," since I had registered the kids and I, but didn't know until this morning whether we were actually going to attempt the drive from LAX to Pasadena over "Carmeggedon" weekend (for those of you who don't live in SoCal, it's a weekend where they close down one of the busiest stretches of freeway in the entire US - everyone freaks out and is told to either leave town or stay home, but avoid the freeways at all costs)). The good news is that because everyone else was busy leaving town or staying inside, the freeways were pretty clear and it was smooth sailing both to and from Pasadena! That was a lovely surprise!

But the walk. Oh the walk. It was our first Heart walk and let me tell you, it was emotional for me. I literally cannot put into words the emotions that swelled within me when I put Bodie's "Heart Survivor" shirt on...and then watched his little pint-sized body dance around in it in excitement. 
Not the best picture, because the kid was so excited that he wouldn't stop dancing around. Just imagine this image, moving constantly. It was a lot for me to take in. It was a lot for others around us to take in. I wasn't the only one in tears. It.was.amazing.

Actually, I was in tears twice within the first 30 minutes of getting to the walk (of course, the second time may or may not have been because I went to chase Bodie down and turned around to find out I had lost Sierra in a huge throng of people - I was literally calling her name, sobbing, with a huge wash of panic setting over me. She turned up 2 minutes later (over by the dance area) and was pretty befuddled to find me crying. But, like I said, that may or may not have happened).

But all in all, it was a great event. Both kiddos did ok, although there was an exhorbitant amount of whining from a certain 5-year old (not that I can blame her; I mean, it was literally like 1,000 degrees out (I should have titled this post "Walking on the Surface of the Sun") - but still, even justified, it was annoying), but otherwise, they did great. Sierra walked most of the event and Bodie walked a little of it. I would have let him walk more (goodness knows, he wanted to), but I didn't want to be there until next Tuesday. ;-)

We got to see a few other heart families and their special heart warriors and that was cool. And we got to hug some of our favorite nurses and therapists, which was awesome! And we got a LOT of oohs and aahs over our signs:
And Bodie's (on the stroller) mentioned his 3 open-heart surgeries, which definitely prompted a lot of conversations. Doing our part to raise CHD awareness!

I cannot think of a better way to spend the almost 3-year anniversary of his diagnosis (but more about that on Monday)!


Sunday, September 23, 2012

A heart weekend

Whew! What a weekend! This was the busiest weekend I can remember in a long time, and it was all about heart activities!

On Friday, the kids and I headed up to the Central Coast (about a 3 hour drive) to celebrate a very special little girl's first birthday! We ended up staying at her house for Bodie's first ever "heart slumber party". Bodie has always had a thing for Ella, and as you can see, that "thing" is still going strong. Enjoying our sleepover...
What's a heart kid slumber party without meds?!?

Then, on Saturday, we got to go to her birthday party to celebrate in style. It is always such a miracle to see any medically fragile child hit a birthday, but it's even more special when it's a family you've come to know and love, which we definitely have. It absolutely brought tears to my eyes to see Miss Ella May have her birthday cake!
We also had the joy of meeting up with another heart family at the party (Jayden has Shone's Complex and has also had multiple open-heart surgeries). The heart warriors:
Not to be outdone, Sierra had a BLAST with the little girls around her age! They ran around and had so much fun together!
Saturday, after the party, we headed back home for a special event on Sunday. About a year ago, we formed LA Heart Moms, a group of women I'd met during our various hospital stays, all of whom had kiddos with CHDs. It's a great group of women who have really been a wonderful support for me. There's nothing quite like meeting someone in person who has walked in your shoes and just "gets it."

Today, we had our first ever LA Heart Moms pool party - and everyone brought their kids. Oh.My.Goodness. AMAZING and so good for the heart to see all of these kids running around, swimming and just living their lives. You know, all the things you never dreamed you'd get to see your child do when your received your diagnosis?

Check.It.Out. 9 heart kids (two little dudes were seriously having NONE of the group pic). 19 Open-heart surgeries. The bravest kids I know.
And the most amazing (and exhausted) moms I know. Man, I love these moms!
We tried to get a pic of all the heart kiddos and their siblings, but it just wasn't happening. But, you get an idea of how many kiddos there were - lots of fun to be had!

 And at last, after 2 1/2 years of trying, I finally got a picture of Bodie and Townes where they're both smiling (you know, instead of Townes smiling and Bodie (aka "the angry blue version of Townes") screaming)! So excited. Love these boys. :-)

Wednesday, September 12, 2012

Sometimes I forget...

Sometimes I forget. 

In the midst of his robust toddler boyness, I forget how small he once was, how fragile his tiny body was, how hard he has fought to be here. I forget he was kept alive for months by machines pumping life-saving heart medicines into him, just willing his heart to beat stronger, to sustain him one more day. I forget.

In the midst of him clinging to me, demanding to be picked up and carried for the hundredth time, I forget how empty my arms once were and how my heart ached, reaching out to hold a child who couldn't be held, as he lay sedated and fighting for his life in a tiny infant warmer in a sterile ICU room. I forget.

In the midst of morning chaos when both the kids are driving me absolutely nuts fighting over every little thing and I keep having to separate them, I forget how our family was split apart, how my arms couldn't reach to hold both my children at once, how they were a city away from one another. How I cried for days on end, just aching to have them both under my roof at the same time. How I worried the day would never come. I forget.

Sometimes, in the bliss of normal life, I forget.

But not today.

Never today.

Because today marks the 2-year anniversary of the day we handed our sweet boy over to have his tiny chest cut open and his heart fixed for the 3rd time in 7 short months. 

The morning of surgery...

The day after...

2 days later (it is awe-inspiring how resilient children are!)

On discharge day, 5 days, yes 5 days, after open-heart surgery!

Today, we celebrate our son, how far he's come, his strength and determination. And we praise God for His provision for our son.

But sometimes, in this blissful Glenn stage life, I forget how far he's come, how far we've all come. Praise God for the blissful moments where we forget. Praise God, because, in those moments, it means that my son is more than a heart warrior; it means my son can just be a boy, dirty, scraped knees and all. 

Which really, is all I ever wanted for him.


Saturday, September 8, 2012

Relief...sweet relief

"Unplanned cardiology appointment." 

Any heart mom can tell you that it doesn't matter how you rearrange them, those 3 words never mean anything good - and they are never accompanied by any emotion other terror and a desire to vomit. Yet, this is where we found ourselves last week.

Bodie had a regular cardiology appointment scheduled for this week. A 3 month check-up. For the past month (really, since we'd weaned his Sildenafil down), he'd been a bit "bluer" and more winded than normal. His sats, which had been comfortably in the mid-80's, were sitting more in the mid 70's to low 80's. I had planned to talk to his cardiologist about it at this next visit, to discuss whether perhaps we should go back  up on the Sildenafil (we had originally come off of it entirely, but he hadn't tolerated it very well, so then we'd gone back on a very low dose).

But then, he had a rough week last week. He had a tummy bug over the weekend when we were out in the desert, where he'd thrown up a couple of times and had diarrhea for a few days. Since then, his oxygen saturations had been even lower (low 70's, sometimes dipping to high 60's), he was definitely more blue and sweaty than usual, he had been having days with multiple bouts of arrhythmia (prior to this past week, he had gone almost 6 weeks without an episode of Tachycardia, which, for him, was nothing short of a small miracle), he hadn't been eating much, and the crankiness, oh, the crankiness. I was kinda losing my mind, so you can imagine how bad it was. Something clearly wasn't right. His body wasn't happy. I was scared. All I could think was Congestive Heart Failure. 

So I called his cardiologist on Thursday to see whether she wanted to see him sooner. Sure enough, she did. She figured the symptoms we saw last week were likely the result of dehydration from the tummy bug, which could absolutely cause both low sats and arrhythmias. Apparently, Glenns don't like being dehydrated, and they have a harder time when their fluids are low (something to do with the smaller blood volume they have to begin with). BUT, with everything we were seeing, she didn't want to wait to see him, so she squeezed us in yesterday for an emergent appointment, echo, ekg and holter monitor. 

It's putting it mildly to say that my heart was in my throat. Most of the time, I think I got this heart mom thing down pretty well. But days like yesterday, I definitely didn't feel like it. The week leading up to cardiology appointments are hard anyway (one of my fellow heart mom friends said it took her 5 years to realize that it wasn't PMS, but anxiety she was having prior to cardiology appointments! Ha!). But they're so.much.worse when you're seeing troubling symptoms and you're afraid of what they mean. (I want to say Dusk and I finished a bottle of wine at dinner every night last week - and I am not usually a big drinker - if that tells you anything about where my stress levels were!) I think it's because it's such a slap in the face reminder that your child is medically fragile and no matter how healthy he looks, he has a very compromised heart beating inside his "normal" looking little boy body. It's just hard all the way around.

But I am BEYOND relieved and happy to report that his appointment went great! Not only has he grown another inch (37 inches and 31 1/2lbs, putting him in the 50-75% for both height and weight - not bad for a kid who didn't even make it on the charts before his Glenn!!!), but he was satting 87 (nice, Bodie - way to make it look like mommy was making up symptoms just to get you in quicker!) and both his ekg and echo looked fantastic! His heart function looked great, he has no triscupid regurgitation (which is really good news), and only "a whiff" of aortic insufficiency (which he has always had - it's so minor that sometimes they can see it and sometimes they can't). She seems to think everything we saw last week was likely a result of dehydration and now that he's replenished his fluids, he's much better. THANK GOD. 

We talked a little bit about his meds and decided to go up a bit on his Sildenafil, to try and keep him comfortable until the Fontan, and hopefully buy us decent sats for another year. Depending on the results of the 24 hour holter monitor, we may start talking about weaning him off the Amiodarone (which would be AMAZING given the scary possible side effects of Amiodarone!), because the Atenelol (the beta blocker he is on) seems to be doing a better job of preventing his tachycardia than the Propranolol ever did - so our hope is that Atenelol alone might be enough. Prayers for that would be appreciated!

To celebrate the great appointment (and Sierra's first week of Kindergarten going so well), we went to the park and out to ice cream with one of Sierra's best friends from preschool and her little brother (whose family is moving in the next couple of weeks - story of our lives, right?!?)...


Wednesday, September 5, 2012

Schoolhouse Rock

And just like that...the school years have begun for us...
Sierra had her first day of Kindergarten today and absolutely LOVED it! I am so grateful we chose the school we did for her! 
I tried to include Bodie in her first day of school pics, I really did. And as you can efforts were met with the utmost cooperation...
Sierra did awesome at drop-off. I, however, was a hot mess. Perhaps it was from running a little late due to the rain, or from getting violently screamed at by a complete stranger because I couldn't tell that he was in fact not pulling out of his parking spot, or from constantly having to grab her new markers out of Bodie's hands as he was furiously trying to scribble on her desk with them, or, I don't know, maybe BECAUSE MY BABY WAS STARTING KINDERGARTEN?!? Ah, whatever the case, it was nothing that a nice hug from the Kindergarten teacher couldn't make all better. Yep, I'm that dorky parent whose kid did fine but who was in tears and needed a hug herself. I'm sure Sierra will be super proud to read this someday.

But I digress. Truly, the school is fantastic. The parents were invited to Chapel, which I was beyond impressed with. I had honestly expected to be pretty bored with it (not sure why I expected it to be dry and boring - I don't find church boring, but I guess the name just conjured up images of complete boredom), but it was so well done and engaging for the students. They were all participating and it was clear they were having a great time. I was pretty blown away with how dynamic and entertaining it was, and thrilled to know Sierra's going to be getting solid Biblical teaching both at home and school. 
I've been praying so hard that Sierra would find a good little girlfriend in her Kindergarten class, somebody whose mom I would really vibe with as well. In a class of 8 kids, only 3 of whom are girls, that's kind of a tall order, even for, you know, the creator of the universe (and obviously, yes, I realize it's not really a tall order for Him, but in my super emotional "my baby is starting kindergarten" mind, it totally seemed like it). Well, boy did God answer, because both of the other girls are super sweet and one of them could literally be Sierra's sister (just similar in so many ways), and doggone it, if her mom isn't the most awesomely hilarious and sweet woman I've met in a long time! I would include the darling pic I got of the girls, but I don't know the mom well enough yet to post the pic without her permission. But suffice it to say, the girlies are going to be fast friends, and I'm pretty sure I've made a great new friend in the process as well. Praise God! 

All in all, the day was a huge success and Sierra says she can't wait to go back! What a blessing to be so happy with the school we've chosen for her. :-)


Monday, September 3, 2012

Laboring? Not so much...

We just got back for our annual anniversary / Labor Day Palm springs weekend getaway. SO.MUCH.FUN. My parents closed escrow (on our anniversary!) on a new home in the desert, and we got to help them settle in. It's gorgeous, really, an incredible oasis (Dusk may or may not have had to pry me kicking and screaming away from the pool, and I may or may not have been negotiating with him for as much extra time as possible...)

We had an absolute blast. 

We played hard...
And slept even harder...
We took our obligatory "oh my gosh, look how much our baby has grown" pic that we take of Sierra every year...
We had a surprise playdate/swim night with one of Sierra's best friends from preschool, Riley (and her whole awesome family, who we may or may not have a little bit of a family crush on), who just happened to be in Palm Springs at the same time as us...
We checked out our baby's heart...
Thankfully, it was AOK...
We got REALLY good grub...
We got to spend a few minutes with our cousins (and by a few, I mean, literally, a few - they showed up today and we were both there for maybe an hour before we loaded out and they loaded in for a few days)...
I mean, c'mon, could these girlies BE any cuter?!?
And we took an obligatory family picture (very obligatory this year, as my brother's family is moving to OHIO at the end of the month, so this was the last time we'd all be together for awhile! A big YAY for them, but a big BOO for us!). 

I never know which is my favorite...the outtakes from the attempts at a family pic...
Or the final, successful result.
 All in all, it was a wonderful, mostly relaxing (ok, completely relaxing if you ignore the tummy bug Bodie caught and the newfound attempts at "swimming" he embraced all weekend) getaway - the perfect rest before school starts and Fall gets into full swing!