Busy Bees

Wondering where we've been? Ok, probably not (I think you all know no news is good news with our family), but it's been almost 3 weeks since I last blogged! Rest assured, all is GREAT with us - we've just been very very busy. Here's what we've been up to...

1. We've been ROCKING cardiology appointments.

Bodie had his quarterly cardiology appointment earlier this month (for the record, it was the FIRST time he's actually made it the full 3 months without an appointment inbetween to check his tachycardia, pulmonary hypertension or some other fun thing!!!) It went GREAT! His heart function looked beautiful, with very little, if any, valve regurgitation. We'll be making some major med changes (dropping his pulmonary hypertension med and changing his beta blocker from a 3x/day med to a 2x/day med) - his doctor was ok with changing them earlier this month, but he's doing so well now, we didn't want to rock the boat right before vacation. So, we'll be making those changes later this summer, after our vacation. We also got clearance to do BOTH our Tahoe trip and our airplane ride later this summer sans oxygen since he didn't need the oxygen we took to Tahoe last summer (super excited, but nervous about this one!). We left with instructions to enjoy our summer and come back in 3 months. After the really rough start Bodie had, we continue to feel abundantly blessed with each good cardiology appointment. 

2. We have NOT been rocking dental appointments.

Daddy and I both had check ups - he got off with no work needing to be done. Mommy had to have a cavity filled and 3 little ones between the teeth filled as well. Never had a cavity until I turned 21, had 2 that year and none since. Now 4. Awesomeness. I'm totally hanging my head in shame - and then blaming Bodie. Heck, we blame the stress surrounding his medical issues for everything else - why not this, too???

3. We've been injuring ourselves. 

Bodie's always sporting new shiners on his head and face (this kid seriously has no spacial awareness) and Sierra has permanent bruises on her shins from her twice-weekly falls down the two (yes, two) steps in our house (seriously, WHY can the kid not learn to slow down?!? Ok wait, scratch that - she's my kid). Daddy's been the worst culprit by far, falling off a retaining wall and spraining his ankle. Badly. (But I do have to admit, it was almost worth it, to see Bodie's expression when we woke up from nap to find Daddy crawling to get across the yard - the kid immediately dropped to all 4's and started crawling right behind him. Seriously priceless.)

4. We've been so busy that we ended up at Daddy's doctor's appointment (had to be a full family affair, what with Daddy's inability to drive thanks to the aforementioned sprain) with a shoe-less Bodie (oops - I think that was my responsibility, although Daddy keeps trying to say he left Sierra (yes, the 5 year old) in charge of it). My go-with-the-flow response? "No prob. We'll just drop you off and run to CVS. I'm sure they'll have flip-flops or something." They did. Well, the 3rd CVS we tried did. And they did have "something" indeed.

Yes, they're for real. And yes, he stinking LOVES them and wants to wear them all.the.time. Ah well, it just adds to his fashion sense.

5. Speaking of which, we've been making fashion statements...

and growing some mad "PUHlease mommy, won't you cut it?!?" hair...

(Rest assured, hair appointment has been scheduled...for tomorrow)

(yes, when it's possible to channel Sierra circa 2009, it's TIME for a haircut)

6. We've been "library'ing" it, signing both kids up for the Summer Reading Program. 

(Don't be fooled by the pics - Sierra's totally into it, reading way ahead already (well, looking through her books) and digging the prizes. Bodie can't be distracted from his path of destruction long enough to sit down and read for a whole 30 min. Baby steps.)

7. We've been making our own finger paint and painting away.

8. We've been singing A LOT. NOTHING makes my heart smile like hearing my kids sing praise songs. 

(He is singing "The B-I-B-L-E" (you know, if you don't speak Bodie), and if you can't see the video - just click here. It's worth it, I promise). (Oh, and pause the music on the side of the blog to hear the video!)

9. We're potty training!!! 

(Isn't that sticker adorable?!? They have them in Bodie's class at church!) Crossing our fingers, but so far, the kiddo looks good and ready to be done with the pull-ups! (whew - that was SO much easier than the year and a half it took us to potty-train Sierra!)

10. We've been getting ready for 4th of July and our annual trip to Tahoe!!!

We are T minus "so close we can almost smell the mountain air" to Tahoe!!! We're so excited! Please pray that all goes well and the little man handles the altitude as well as he did last year!

Hope you're all enjoying your summer as much as we are! Have a great 4th of July!

Heart Heroes, Unite

Last weekend, we raced from Sierra's preschool graduation down to Orange County for the annual California Heart Connection picnic (the events actually overlapped by an hour or so - so much for our new house rule "we will not be over scheduled" - hey, this mama is a work in progress - we'll get there eventually). This was our second year at the event, and it was SO fun. It was even more fun this year than last year, since we knew so many families there! So fun to watch these little CHDers getting bigger and stronger every year, continuing to defy the odds every day. It was really neat not just to spend time with close friends, but see old friends from our many hospital stays, and provide inspiration for parents just starting this journey with their little infants, dependent on feeding tubes and oxygen. The whole thing was good for my soul. And for the kids, of course. Sierra ran like mad with the older siblings, and Bodie LOVED it. Absolutely LOVED it - especially this little heart monkey they had for the heart kiddos. :-)

Me and the kiddos, enjoying the festivities...

We got to see lots of old friends. Here are the miracle boys, Bodie (2), Trevor (5) and Townes (3). Both of these adorable little dudes are post-Fontaners and I love how these guys all look like they could be brothers! (one of the dads standing around watching actually thought Bodie and Townes were brothers!)

Bodie finally got to meet sweet Lorelei, who has HLHS like Bodie and is just a few days younger than him. She and Bodie were at CHLA at the same time for quite awhile, but her mother Sabrina and I didn't actually meet until both kiddos were home. She's gearing up for her Fontan this Fall, so prayers sent her way would be much appreciated.

We tried hard to get the kiddos to hug and smile for the camera. Like I said, we tried... and we got Lorelei looking confused and Bodie picking his nose. Awesome. I guess the upside is we got him to stop emptying the coolers and moving the 20 packs of soda long enough to take a picture.

We finally caught a pic of them hugging - and then they promptly lost their balance and landed in a heap on the grass! Haha!

Is there anything more special than a fellow CHD sibling? Sierra with Townes's big sister Evelyn (the girls are 2 months apart in age and are great friends). I cannot tell you how much I love these girls. When they get together, fun and screaming ensues every single time. They are the epitome of what it means to have girlfriends at 5 years old. Love. Love. Love.

We also had an opportunity to take some time to do a special balloon release for sweet Travis, who should have been there at the picnic with us. He went to the picnic in 2010 and his absence was definitely felt both last year and this year.

Our little CHDers (Townes, Grace, Bodie and Trevor) gathered with Jeni...

 

They released the balloons...

And the balloons promptly went up in the air and stuck in the nearest tree...

...and stayed there for the remainder of the picnic. It was perfect. Travis LOVED trees. And it was as though he was saying "hey wait a minute! I'm supposed to be at this picnic. Like heck I'm leaving! I'm staying right here just as long as you guys are." Best.thing.ever. :-)

We love and miss you every day Trav.

Thought I would close with a pic of Bodie with one of our favorite HLHSers, Jeni. Jeni is 26 (almost 27!) years old with HLHS, one of the oldest living survivors of the Norwood surgery, and just an all around amazing Christian woman. We feel so blessed to have her in our  lives.

 IThis has been a rough week to be involved in the CHD community. I feel like every time I log into Facebook, I am reading about CHDers struggling with Norwood recovery, or battling effusions after the Glenn, or being rehospitalized post-Fontan. More than one has been on ecmo this week and one is passing as I write this. My heart has been so heavy all week. So it is weeks like this that I am especially grateful for events like this, for an opportunity to watch our CHD warriors run together, laugh together and play like typical kids. An opportunity to meet their dads, to hug and laugh with their moms. This weekend was all about HOPE and SUPPORT. To have families walk this journey with us that we are so close to is an amazing thing. And that makes weeks like this totally, completely, 100% worth it. :-) 

The Graduate

Sweet baby girl, it seems crazy to say it, but you are officially a preschool graduate. Oh I know it's not as big a milestone as graduating from highschool or from college. But it is a big deal to your daddy and me. We can remember when you started at DRCCC, a tiny 4-month old baby girl. The pre-kindergarteners graduating that year seemed light years older than you, a different generation, really. They (now moving from 4th to 5th grade) still do. And here you are, now a graduate! Along the way, you've learned so much, changed so much. You've had a hospital stay, moved into a new house, learned to walk and talk, been to Florida once and Lake Tahoe twice, saw Daddy get a new job, got a baby brother and supported and loved him through everything he went through. And through it all, you have turned into such a sweet, kind, nurturing little girl who LOVES babies (both real and play) and nurturing others. 

We had so much fun celebrating you today, and watching you with all of your classmates. Your graduation was so much fun. We are so grateful to your teachers, most especially

Teacher Nancy, the most incredible and loving pre-k teacher anyone could ask for.

Teacher Debbie, who taught you your ABC's and who will always hold a special place in our hearts.

And last, but never least, Teacher Judith, your precious Juju. You were so lucky to have Juju as your teacher not just for your 2 years in the nursery, but then a 3rd year in the Duckie class. Juju "graduated" to the Duckie class 2 weeks before you did, making your transition so easy and special. We will never forget the love Juju has shown you and the special connection you have shared. She loved you through one of the most difficult times in your life to date. Leaving you in her hands, we always felt as though we were leaving you with one of the few people on the planet who loved you as much as we do. 

We loved reading the special sign your teachers made you, where every single one wrote you a special message. We will cherish it forever. What an amazingly thoughtful gift!

We giggled watching you dance to your favorite song, the "Tooty Tot" with all of your best friends. You're so silly!

My favorite part by far of the entire ceremony was the video, which included baby pictures of you and all of your friends and pictures of each of you during your time at school. Since you had been there since you were so young, your school pictures even had baby pictures (I had forgotten all about your "cute, fat bald stage" (which lasted until you were 2 or so)!!!). And the video included an interview with each child. Your answers were absolutely priceless. 

What did you learn in pre-k? 

No hitting. 

(Yep, everyone laughed at this one!)

What are you most looking forward to in kindergarten? 

Having a picnic next week with my new kindergarten friends. 

(True - we're going to the all-school picnic at her new school next week.)

What do you want to be when you grow up? 

A mommy. 

(Sierra, this has always been, without fail, your answer to this question. It warms my heart to heart it. I hope and pray this is always your wish!)

What are you most grateful to God for? 

My little baby brother. 

(You melted your mama's heart here!)

Congratulations sweetheart! We are so proud of you and LOVE YOU SO VERY VERY MUCH.

Love,

Mommy, Daddy & Bodie

Livin' it up

We received so many wonderful responses to my last post - thank you SO MUCH for being such a wonderful source of support to our family! We are so blessed to have so many faithful friends and family praying for us. :-) But I do want to make one thing clear. Lest you think we sit around dwelling on the uncertainty and unknowns, I assure you we DO NOT. Yes, the fear is always there, lingering at the back of our minds. But we make our very best efforts to push it away (and most of the time, we're successful, thankfully!) If nothing else, we want to make sure we've soaked in every moment we've been given with our kids, really, truly, living life. Case in point - we just got back from an awesome, and by awesome, I do mean AWESOME, amazing and exhausting, weekend with my parents. 

(sadly for us, this is Bodie's newest expression when you ask him to smile for pics...though I suppose it is better than his old standby, to dissolve into a torrential downpour of tears and throw a screaming fit)

 Does this look like a kid who doesn't live life? 

Yeah, I didn't think so either. ;-)

My dad took them both for rides in the golf cart. I just love the look they're exchanging here.

And we got to meet one of our other favorite heart warriors, Ella at the local Strawberry Festival! I'm not sure which I love more...

Bodie's look of utter excitement (he is OBSESSED with Ella!) 

(hey look - his favorite expression again)...

or her response to him. Clearly, she's thinking "this kid again? For real?!?"

The highlight of the trip for the kids by far was jumping in the bouncers at the Festival. 

Sierra, as always zipped around and over them like it was her job. She does so great on these things! She's a pretty coordinated kid, fairly astounding considering the contributors to her gene pool.

Bodie blew us away. Sierra wanted to go on this bouncer, which we knew Bodie wouldn't be able to climb up. It's huge, right? I mean, the almost 4-year girl in front of him had a hard time with it.

Well, we let Bodie go in anyway, figuring he'd play down near the bottom with the fake palm trees and stuff. Which he did...for a bit. But then he headed for that ladder. My dad and I were watching him (they didn't let adults go in, so he was completely on his own), thinking "there is NO way this kid is going to make it up that thing. It takes SO much upper body strength." We watched him, waiting for him to give up and fall back down. But wouldn't you know it, this little stubborn kid, with his whole half a heart, methodically and slowly climbed up every rung and step of that ladder. It was kinda like watching him rock climb. He'd reposition  himself on every step and look for the next step or rung, and reach for it, pulling himself up a little further. Until he finally made it to the top.

It took him almost the entire 5 minutes he was allotted in the bouncer (and luckily there were 2 ladders, so the other kids could go up the other side and didn't have to wait behind him), but let me tell you, he couldn't have possibly been prouder of himself to come whizzing down the other side. I don't know that I've ever been prouder, either, to be completely honest. The kid continues to amaze me daily with his strength and determination. (Oh, and you KNOW I'm printing out pictures of this to take to his Physical Therapist next week, in light of the recent report that showed him to be testing at 18 months for gross motor skills! Ha!)

Those of you who know our political leanings won't be surprised that, when given the choice to pick one toy at the Festival, they both picked "shoot guns, daddy!"

Thank you so much to my parents for hosting us for another awesome weekend! We love you Gigi and Popo and can't wait to do it again!!!

Anticipatory Grief

Yesterday, a relative of Dusk's forwarded me a link to an article in his local newspaper, about parents who had started a nonprofit foundation in memory of their daughter Lauren, who had passed away from a Congenital Heart Defect. He sent it to me, saying that although the article was tough to read, the family was trying to make some good out of something terrible and had started a foundation and it made him think of me. It meant a lot to me that he thought to send me the article.

I linked to the article and started reading. It took me just a few minutes to realize that this sweet little 3-year old girl had Hypoplastic Right Heart Syndrome (the opposite of Bodie - she only had the left side of her heart - different first surgery, same second and third surgeries, better outcomes generally as you're working with the stronger side of the heart) and that she had passed following her third surgery, the Fontan...the very same surgery Bodie is gearing up for. My heart literally stopped when I read that. It's not often that kids pass after the Fontan (most of the top surgical centers have survival rates between 95 and 99%). But it does happen. Typically the kids have other complicating factors, but not always.

I found the girl's Caring Bridge site...and was met with photos of the sweetest little 3-year old girl you could imagine, smiling up at the camera just like any other carefree 3-year old. I scoured her site, looking for complicating factors, things that would make her higher risk, that would explain why she passed in a way that would mean it couldn't happen to Bodie. (Not that complications make it any easier when it's your child who passes, but only that it makes it easier for me to distance myself.) I came up empty-handed. She wasn't complicated. Her Norwood went pretty smoothly and her Glenn went smoothly. She spent the time between her Glenn and Fontan living a pretty normal life, just like Bodie. She geared up for her Fontan, the pinnacle of the surgical route hypoplasts must take, the make-or-break it surgery, where the land of milk and honey lies on the other side, the land of "no anticipated interventions for the foreseeable future." Her surgeon and surgical center were top notch. Her parents sent her into her Fontan fully expecting her to recover well from that surgery as well. They had no reason not to.

Her Fontan went off without a hitch - the surgeon came out and told the family it had been a textbook Fontan. They saw their sweet girl transported into the Cardiac ICU, with the attending nurses and docs all saying how great she looked. Moments later, everything changed. They were called into a private room, with doctors and chaplains and told that something had happened. The mom actually said that no, she thought for sure they had the wrong family, that they had just seen their daughter and everything was fine.  But it was the right family, and their sweet girl had had an arrhythmia and gone into cardiac arrest. They had to re-open her chest, do chest compressions and place her on ECMO. She came off ECMO a couple of days later, but they had to let her go shortly after that. To be honest, the site doesn't give a lot of details, but I assume it was brain damage from the time spent doing CPR.

When I read stories like this, I literally cannot breathe. My chest tightens. My world starts spinning and I get nauseous. (Anxiety attack? Yes, please.) I run to hug Bodie, to cling tightly to him, begging God to "please let me keep my son. Please don't take him from me." It is impossible to explain the sheer amount of death and sadness around me all the time, being so deep into the heart community where warriors are turned into angels suddenly, unfairly, irreplaceably fast.  But reading stories like this, of a child doing so well and then, just, inexplicably gone, as a result of a surgery that Bodie still has to have makes it so.much.worse. It is every fear of mine wrapped up in a pretty little box with a nice shiny bow. Pretty fantastic, right?

I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family? 

So why am I writing this? I'm writing this to ask for understanding. For an understanding of the sort of mindset a heart mom finds herself in. For extra prayers for our family during this time period leading up to Bodie's Fontan. I know we still have a ways to go (probably another year or so, unless Bodie has other plans), but truthfully, I know I won't fully exhale until we're post-Fontan. So, if I'm a bit neurotic (you know, more than usual), a bit more emotional, a bit more tough to handle, please understand why. I think I'm pretty good at "letting go and letting God" and trusting that ultimately, HE is in control, not me - but, as a human, as a mom, I am daunted by the thought of another open-heart surgery. I am afraid every.single.day that my son won't make it through this surgery, that my grief will turn from anticipatory grief to real, true grief. That, like Lauren's mom, I'll be left only with memories of my sweet toe-haired boy who once walked among us for far too short a time. And we have so many heart friends approaching their Fontans this summer that I get to live with this constant Fontan-reminder and the accompanying anxiety attacks.  So, yeah, if you have the time to spare, send some prayers up for our family - and all of our heart warrior friends. And especially, most especially, for this sweet little guy. Because I want a lot more moments like this in our future...

Sweet Memories

We got back earlier this week from an amazing weekend vacation with Dusk's brother, his wife Missy and their sweet girls, Hannah and Amelia. The last time we saw them, the kids looked like this:

What a difference 16 months can make, right? 

Oh my goodness, we had SO MUCH FUN. The kids swam their little hearts out... 

(seriously, my kids must have been fishes in another life, because that's ALL they wanted to do - and these Puddle Jumpers were a HUGE lifesaver for us - they allowed Sierra to swim independently with Hannah and Amelia - and allowed me to not have to have my hand on Bodie every second he was in the pool. Before the Puddle Jumpers, Dusk and I would pretty much treat Bodie like a hot potato, constantly passing him back and forth because being on "Bodie duty" in the pool was so stressful, just waiting for him to injure himself/jump in the pool - neither one of us wanted to be on "Bodie duty." But with these awesome lifevests, we can actually sit next to him and watch him - and relax - a bit.)

And Sierra mostly did a lot of this - jumping into the pool and "swimming" from one end to the other. Clearly, her swimming lessons are paying off! Yay!

I just love this sweet pic of my beautiful sister-in-law with Amelia

...and we did A LOT of sleeping... 

(this was how they slept all weekend - Bodie is officially so.OVER.the pack and play, apparently. He was all about sleeping in the same bed as Sierra - and really, it was way toooo cute to resist - and she's way more amenable to his kicks and punches than we are. Saturday night, I walked in to find them both snoozing peacefully, her elbowing him and him spooning her butt. Seriously.)

...and we did A LOT of giggling with our cousins...

Bodie and Hannah, who doubles as an AMAZING babysitter!

Bodie and Amelia

Sierra and Amelia - SO fun to have a cousin just a few weeks younger than you!

And we just plain relaxed...

Seriously, HOW are these kids not biologically related to each other? They could be siblings, right?!? And Bodie LOVED Hannah (actually, both my kids were pretty obsessed with her - nothing like an amazing older cousin to adore, right???) - he went right to her and let her carry him around almost immediately, which is pretty much unheard of for him!

As always, when we have an opportunity to slow down and spend time with friends and family, I am reminded how lucky we are to share these moments with both of our children. When we started this journey with Bodie, we had no idea how many of these moments we would have with him. We still don't. We are reminded of that as our heart buddy Olivia (Bodie's age) recovers from the Fontan at a Children's Hospital in Chicago right now. We are minded of that as we read an article this morning about a 3 year-old little girl that passed away following her Fontan surgery. So, as my chest starts to tighten and I get nauseas thinking about the uncertain future our family has been given, I choose to focus on God, and celebrate each little moment. We had A LOT of moments to celebrate this weekend!