Friday, March 30, 2012

Two Years Ago Today...

Two years ago today, our sweet boy came home for the first time. He was 6 weeks old. We were like first time parents on steroids. We were elated. We were thrilled. We were scared and beyond nervous. We had every right to be nervous - we had only one job and that was to keep our son alive. With interstage hypoplasts, that's no easy feat.  He was on continuous oxygen, on thickened feeds and on 6 different medications (most administered 3 times a day, for a total of 17 syringes), but he was HOME...for a second.
I am SO GLAD we didn't know what was around the corner for us. I am SO GLAD we didn't know we'd only have him home for 3 weeks before racing back to the hospital, almost losing him in the cath lab and again hours later, or that we'd be watching him rushed into emergency surgery a week after that. I am SO GLAD we didn't know that the next time he'd come home, it would only be for 3 days, before he'd be back in the hospital, diagnosed with multiple hospital borne infections, intubated two more times and at the brink of death within a week. I am SO GLAD we didn't know his first hospital stay (which seemed ridiculously long at the time) would be short compared to his MRSA/c-diff stay. I am beyond grateful that God, in his infinite wisdom, doesn't let us see that far into the future. Because, truly, if I had known how hard it was about to become, I don't think I could have done it. I think I'd have collapsed right then and there and said "NO WAY, God. NO HOW. NOT gonna happen. I cannot do this."

But thank God for his divine wisdom, in not letting us see more than today. So on this day, 2 years ago, I was able to just rejoice. Rejoice in the fact that my son was home. Rejoice that my 2 children were together, finally, and our family was whole.

And today, two years later, I am able to rejoice in my sweet little towheaded boy who, when he gets excited about something and wants more of it, doesn't just shriek "MOOOOOOOOOOORE!!!!", but signs it (the one and only sign he knows) furiously - just in case you somehow missed that he wants more. :-) And who asks for hugs and kisses all day long. Our sweet boy who will drop everything to come running at just the chance to watch a VeggieTales episode. And who is my most helpful backseat driver, alternating between yelling "Watch out!" (a helpful reminder not to text and drive, I suppose - ha!) and "GO! GO! GO!" if I'm not driving fast enough. :-) A little guy who taught himself just 2 days after moving to his bunkbed to close the door if he wakes up and comes out of the bedroom before Sierra. A little guy that loves his mama so stinking much that he literally sobs when he gets to the part of the Llama Llama books when the mama has to leave or doesn't come back quickly enough. He's nothing if not empathetic. My heart is so full of his goodness. I am so lucky.  

Praise God I didn't know where we were headed when we brought our little guy home 2 years ago today. Because I'm not sure I'd have had the strength to ever see ahead to where we are today. :-)

Sunday, March 25, 2012

Whole Lotta Change Goin On Round Here

Yikes - the past few weeks have been chock full of changes. all know how good I am with change (insert eye roll here). But change we must, so we keep on keeping on. Most of the changes have been good, but even good changes often come with a little bittersweet attached to them. But I'm choosing to focus on the good, which in this case, is pretty dang good stuff...

Big Boy Bed Madness
This past week, Bodie officially lost the crib and gained a big boy bed - in the form of bunk beds for the kids! I know, we're crazy, right? Who on earth would get a little climber like Bodie bunk beds?  Parents who are desperate to gain a little more floor space in the kids' room, that's who. Let me tell you, the kids are LOVING them. And no one has fallen off the ladder...yet. We're still hanging onto the crib a little longer - partly because it's nice to have it as a threat/time out location for Bodie, and partly because I've never actually sold anything on Craigslist before and quite frankly, I'm a little scared - and probably partly because, well, selling the crib means we're really, totally, officially, out of that stage, the wholesome, chubby, sweet baby innocence stage. Or, the screaming, crying, won't sleep through the night, projectile vomiting infant stage, however you wanna look at it. ;-) But, the kids definitely have no mixed feelings about it, as you can clearly see...

Underwear Madness
So, this might fall into the category of waaaaaaay TMI, but hey, it's my blog and I have edit rights, so it's getting included! Ha! Bodie is officially completely poop trained. Can I get an amen for that?!? As for pee, well, we're working on it. When he's completely naked from the waist down, he's on it - no accidents whatsoever. But as soon as he has anything on (pull-ups, underwear, commando pants, you name it), it's a freakin free for all of peeing with wild abandon. And, sadly, his preschool won't let him come naked. So, we're running naked at home (and by "we," I mean Bodie - and only Bodie), and pull-ups are at a premium when we leave the house these days. And that means I said "goodbye" to our cloth diaper stash. What sadness for me. I cloth diapered both kids and, as any mom will tell you who cloth diapers, they are ADORABLE. (So not like what our moms used with us as kids - they're totally fashionable now!) But alas, trying to put a diaper on a child standing up got very old very fast, so goodbye to the cloth diapers it was. Thankfully, we found a new happy home for the cloth diapers, with a family of another special CHD warrior expecting their new babe soon. But this mama was still sad to see them go - so many memories of "firsts" wrapped up in those cute little diapers - first crawls, first stands, first steps, etc. Definitely dealing with some bittersweet emotions on that front!

Preschool Madness
For reasons which we, for the most part, understand, but don't agree with, Sierra's preschool has opted not to accept Bodie into their program. Huge heartbreak for us, as we had always planned on sending Bodie there. But we know God must have better plans for our special little guy (would definitely appreciate some serious prayer that God would lead us to the right school for him as well as settled hearts for us in the process!!!).

In the meantime, we had his first "Parent-Teacher Conference" at his TWISPP program this past week and it seriously could not have gone better. His teacher said she was excited to see Bodie was on the list for a conference, but that she actually had to think of things he could improve upon because he really is such a good kid. She talked about his strengths - how verbal he is, how quickly he picks things up (he seems smart to us, but it's always nice to hear it from someone else, you know, not related to him and therefore totally biased!), and how well he shares (not that I can blame him - it's probably easy to share with other 2 year-olds when you're used to your older sister literally ripping toys out of your hands on a regular basis!) as well as his weaknesses - spatial awareness (i.e. it would be great if he could stop sitting on and running into other kids - but then since I do the same thing, I don't know how much hope there is for him!) and self-soothing (can I get another Amen for that one, please?!?). She was super relieved to hear that we wouldn't be pulling him out of the program just yet - a few weeks ago we had mentioned we might be moving him to Sierra's preschool in the near future, before we knew it wasn't a possibility. She said the teachers had been so sad to hear that, and that they totally love Bodie. It was so reassuring to hear how much they love and appreciate having him there. Music to a mama's ears, that's for sure.

Oh, and he has a little girlfriend at TWISPP. If you ask him who he played with, he says "Zoeeeeeeeeeey. Key-ute." or "dor-able" And then gets all bashful. He's right. She is super cute - totally adorable. They pal around together. He could definitely do worse. ;-)

Skating Madness
Last week, for our mommy-Sierra date, I took Sierra ice-skating for the first time. Ever since my parents got her "Ice Princess," she has been obsessed with ice skating. Well, let's just say that while I'm not sure she's a natural, she sure had fun - and that's the most important part.

The best part? When we walked in, her eyes got huge and she gasped really loudly, saying "Golf AND skating?!?!?!?!?" in the most incredulous voice. I looked up to realize she was looking at a poster of a hockey player. Hahahahaha. I guess it would look like golf and skating all at once. So cute! And the LA Kings train at the rink where we were skating, so we got to watch them train for awhile - between that and the "ballet skating" (figure skating), Sierra was in 7th Heaven!

Here she was, watching the action...

Cardiology Madness
In Bodie heart news, he had an appointment with his Electrophysiologist last week and we discovered that his ventricular pacemaker lead has either broken off or is just somehow no longer functioning. NOT good. We are lucky that he doesn't rely on that wire, so they were able to just turn it off - but, had it been a lead he depends on (like his atrial wire), we would have been looking at imminent surgery to get it fixed. Well, if  if 1 wire had to stop functioning, at least it's the one he doesn't need, right? (How's that for glass is 1/2 full?)

In other news, he's continuing to stump his doctors in terms of them really understanding the full picture of why his heart responds the way it does. Please pray for some answers and clarity for the doctors, so that they can make sure they are treating him as proactively as possible. It is SO disconcerting as a parent to sit across from an absolutely brilliant doctor who, when asked whether Bodie will be able to come off his beta blocker, responds by shrugging his shoulders and saying "I hope so, but honestly I DON'T KNOW. I still haven't been able to figure out your son - he's a mystery to me." I so appreciate his honesty, but I am unsettled nonetheless. So prayers in this arena would be great appreciated! (Oh, and for the record, the answer is definitively "No, I will not come off this Beta Blocker" when we tried weaning it this week - but he seems to be faring better weaning his pulmonary hypertension med - heck, we'll take what we can get!)

Thanks as always awesome prayer warriors!

Friday, March 16, 2012

Project 52.10. Worth the Wait

I was watching the kids play yesterday...wait, let me start again. I was running around trying to get us ready to go out the door while they were playing and suddenly noticed they were suspiciously quiet. Never a good sign, right? I found them in the bathroom and Sierra had "done" Bodie's hair "all fancy, mama!". I use the term "done" very loosely because truly the poor kid looked like a drowned rat. She had dumped half a bottle of detangler on his head and mixed in a healthy amount of pomade and then combed it all to the side. It was SO gross and greasy. In the midst of my frustration at how on earth we were going to get him cleaned up, I couldn't help but remember back to when he was born and the hospital wouldn't let Sierra in to see him (hospital policy during cold and flu season) and how I just dreamt of the day where they could be together and play. And lo and behold, it turns out yesterday was the 2-year anniversary of the first time the kiddos met (Bodie, meet Sierra...Sierra, meet Bodie). Yep, I'm going to guess God was nudging me a bit, a little reminder to be grateful for my kiddos playing together, greasy sticky hair and all. :-)

Tuesday, March 13, 2012

Project 52.11. Breathtaking

Man, I am behind on these. I will absolutely catch up soon! Just as soon as I catch up from the stomach flu, cold, double ear infection and two molars that Bodie has had in the past 2 weeks. :-) Good news is, through it all, he started running. Not just walking fast, but really, truly, sprinting away from me as I'm saying "Bodie, come back here now!" Big milestone for our man of little core strength (I can SO relate). And he said his first 4-word sentence earlier this week ("Stop that right now!"). At least, I think that's all good news...

Thursday, March 8, 2012


Today, I took both kids with me for Sierra's surgical consult. She has a bump on her hand that her pediatrician was fairly sure was a cyst, but wasn't quite where you'd expect a ganglion cyst to be, so wanted a surgeon to check it out. He, too, determined that it is likely a ganglion cyst and just wants to watch it since it's not causing her any pain. But because we don't know how long it's been there (Mom of the Year Award for me for not even noticing the bump - my mother-in-law is the one who discovered it - thank you Grandma Jan, but I have some serious mama guilt over missing it...), he's sending us for an ultrasound to see how big it is, how deep it goes, etc. Hopefully, we can just watch it and it won't require any surgical intervention. The surgeon was really nice and didn't seem too concerned, so that made me feel pretty good.

The surgeon was a general surgeon, so sees all sorts of pediatric issues. After he checked Sierra out, he left to go get the ultrasound paperwork. He came back with Sierra's chart in his hand, looked at Bodie and said "wait, HE has Hypoplastic Left Heart Syndrome? He looks AMAZING!" (I guess that tidbit was in Sierra's chart) The surprise in his voice was unmistakable. Apparently, he does g-tube and nissan surgeries at UCLA, so sees a lot of HLHSers and knows a lot of them struggle with feeding issues and weight gain. I guess he's used to seeing scrawny little Norwoods (which Bodie once was for sure) so he was pretty impressed with Bodie. He was surprised to see Bodie digging through my purse for the pretzels. It was pretty funny. ;-)

After her surgical consult, we hopped on over to the cardiology office who did Sierra's consult (anytime one person in the family has a left ventricle defect, they generally recommend that all immediate family members get cardiac screenings, just because they can run in the family).  Anyway, the cardiologist who did Sierra's consult 2 years ago was one we didn't know that well, so I had asked Bodie's cardiologist to take a look at the report and make sure they didn't miss anything. Since we were in the building anyway, I ran over and got the report. 

When I read the report (Sierra shows no cardiac abnormalities, by the way), two things struck out at me. First, the doctor described our family history as "fascinating" - and that was before Bodie was born! (Suffice it to say, Bodie has definitely ratcheted up our family at least a couple of notches in the fascinating category!) Clearly he was referring to Dusk's family history. That term gave me quite a laugh.

The other thing that struck out wasn't quite as funny. He had the following sentence in his report: 

"The maternal history is devastating." 

I guess I can see how he would use that term. For those of you who don't know, our journey to building a family wasn't exactly easy. We've never had much problem getting pregnant - it's the staying pregnant that has always proved our challenge. We had 2 early miscarriages before Sierra was born. Between Sierra and Bodie, we had a 3rd early miscarriage as well as a second trimester loss (that sweet baby had Down Syndrome and a cystic hygroma (really large nuchal fold) and passed away in utero). And we're pretty sure we've had one additional early miscarriage since Bodie (I'll spare you the details, but we're fairly certain). So yes, I can see how someone would describe it as devastating. 

But I wouldn't describe it that way. Yes, each loss has been painful, some more excruciating than others, but all painful for sure. And yes, devastating at the time. And I take such joy in knowing that the family we have in Heaven will be twice the size of our family here on earth (I have always so wanted a big family). But I don't know. I guess I look at it as though it was the building process to giving us the family God intended us to enjoy for now. 

And truly, if this is what "devastating" looks like...
...I'll take it any day.


Tuesday, March 6, 2012

Picture Perfect

Since becoming parents of a medically fragile child, 
we have been beyond blessed by the outpouring of support we've received, 
both from our immediate community and people we've never even met. 
Brenda Munoz was one of the latter.

Brenda is an adult CHD survivor! That alone is enough to give parents like us HOPE. But there's more. Let me just brag on her for a minute - she has not only been through multiple surgeries and heart caths, but is a SENIOR at UCLA double majoring in Microbiology (with an emphasis in stem cell research) and Spanish, with a minor in ethical philosophy. So yeah, not only must her parents be crazy proud, but as a parent to a young heart child, I'm proud of her - and honored to know her and be inspired by her. But enough about how smart she is and how proud her parents must be - in addition to school and volunteering, she runs a photography business. I mean absolutely breathtaking shots - She has such a gift!

She met us through the heart community and offered to photograph our family - how lucky were we to be among the amazing heart warrior families she has photographed and profiled on her website?!? 
We got to do our photoshoot with her a few weeks ago.

I could blog about it myself, but it would go something like this: 
"Bodie ran around like crazy. We literally couldn't get him to sit down, except in front of the ducks (so we couldn't see his face), or in the mud. His nose was running nonstop, which was gross. The best lighting was in the shade, where it was a tad cooler, so his lips were crazy purple and I was freaking out. He was basically a giant pain in the butt. Sierra cooperated - A LITTLE. Daddy didn't want to take the pics in the first place (but at least was cooperative once we got there!) Brenda probably totally regrets asking us. 
I'll be shocked if she even got one good shot." 

But that wouldn't be very fun, when you could actually read her amazing write-up! (But I'm not gonna lie - Dusk and I read it and thought "Was she at the same photo shoot we were at?!? Because we don't remember it quite like that!" Ha!)

Anyway, here is her write-up. I pulled it from her website (with her permission, of course!) - please please please check out her website ( - not only is her work incredible, but by using her for your photography needs, you can support someone who genuinely cares about the heart community and uses her gifts to benefit the heart community on a regular basis)! THANK YOU BRENDA - we love you!!! (Oh, and one other reason Brenda rocks? She brought us lunch at UCLA when Dusk was recovering from surgery - I did mention she was awesome right?!?)

------------------- from -------------------


Number One Rule when you're photographing toddlers: wear running shoes. I am so glad that I was wearing comfortable shoes for this session, because one of the kiddos was a runner! His older sister was a total princess though, so that evened things out :-)

Meet "The Princess", stunning 4 year-old Sierra.

And her 2 year-old brother, Bodie - "The Runner". Look at his hair- need I say more?

Bodie was unstoppable! What you would NEVER guess is that Bodie only has half a heart. Bodie has Hypoplastic Left Heart Syndrome and is living on only half a heart... But you would never know from just looking at these photos of him being an unstoppable toddler :-)

Our first try at a family portrait. We actually did get one with everyone looking at the camera, but I am in love with this candid. It looks like it belongs in a family-related magazine.

We then moved on to portraits with the parents. LOVE this one of Amy and Sierra.

And this has got to be one of my all-time favorite Daddy-Daughter shots with Dusk and Sierra.

Both kids with mom - priceless expressions!

Then it was time to play! Sierra was such a princess on the benches.

She's such a Daddy's Little Princess, it was so cute to watch :-)

Bodie, being all-boy, decided it would be best to climb on the back side of the benches....

...and be thrown in the air by his Mommy :-)

We then tried again for another family picture and I got another magazine-worthy shot. Seriously, someone needs to get this family an agent!

Then we tried for some Easter-style images. LOVE these. Seriously, these kids are so gorgeous!

Bodie and Sierra had a good time with the eggs and basket :-)

The family then changed into some red clothes for Congenital Heart Defects Awareness week and we tried to get a family picture in that. Bodie had a different idea, though.... (see him in the background?)

Bodie thought my cart was SO much more fun :-) LOVE this kid!

Amy and I then put a plan together... we would slowly add people to the picture in hope of getting a family picture. So we started with Dusk and Sierra...

We then added Bodie to the mix while Amy was silly behind me and got this awesome shot!

Amy then ran into the mix but Bodie was all done - he was ready to go play :-)

So we finally headed to the playground to have some fun. Sierra immediately took over the swing.

And Bodie took over the slide :-)

Sierra was such a gorgeous little princess at the playground.

And Bodie was running around non-stop. It was amazing when he would stop long enough to look at my camera!

Towards the very end Bodie was getting tired but he still wanted to try something new - climbing the metal steps in the playground. Dusk was so patient in helping Bodie climb up.

This picture just gets to me... Here's toddler with half a heart (hence the medical bracelet here) doing things that no one thought he would be able to ever do. He reaching new heights (literally) and he's an amazing little boy. Of course, he's doing things with the help and support of his family (hence Dusk's hand in the background to help him). This image speaks on SO many levels.

After his climb Bodie was exhausted and so done that he wouldn't even run anymore, so on to Daddy's shoulder's it was :-)

And then to cuddle with Mommy for a nap :-) Amy and Dusk, thank you both SO much for the opportunity to do this session for your gorgeous family. It was so good to meet you guys and chase after Bodie! :-) Hugs - Brenda