Sunday, November 15, 2015

Chase's New Super Mario Bros. Room!

Saturday was a busy day around here! Several Pinterest projects over the past few months have led up to a big day... transforming Chase's train room to a ((drumroll...))

Super Mario Bros. Room!

{{insert feigns of shock and awe here}}

It seems like just yesterday we were finally getting around to updating Chase's room from sparse nothingness to a super cute train room back in December 2012. And here we are, almost 3 years later, finally transforming his chambers into a tribute to his beloved Mario!

Clearly I will be sharing a ton of photos of the transformation below, as well as Chase's first look at the big unveiling. For a sneak peak of the inspiration behind his new room, take a look at my Pinterest board!

So fun, right?? I started working through the various projects about 2 months ago. With 3 kids, homeschooling, and a myriad of outside commitments, I knew I wouldn't have a ton of uninterrupted time to focus on any one thing. So I made sure to give myself plenty of time to accomplish everything I wanted to include in his new room.

I'll share the details on the individual projects and purchases at the end of this post. But first, I want to share how excited Chase was to discover this huge surprise awaiting him once he returned from a full day of fun at Mona's with his big sister and little bro.

Here's his first look at his new Super Mario room! He was SO surprised... and I think he liked it! :)

He walked all around his room, taking it all in. There was a LOT of Mario happening in this small space, and it was awesome to watch his response to each and every new thing he noticed.

What?? That trash can looks like a pipe! And Luigi is about to go down into the pipe! Haha!

Here he is explaining an incredibly interesting Mario fact to me.

He loved the new light switch cover! He's a big fan of all things superstar!

He had to identify all of the characters on his new bedding.

And he was so pleased that he could reach his radio/CD player now that it isn't out of reach on top of his dresser as it was previously. He explained to me exactly how to turn it on and find his favorite Christian radio station.

Wow! His books were so nicely organized and categorized. Obviously mommy was here! LOL!

He thought the new Question Block bins were sooooo cool! Plenty of storage space for his favorite toys!

It didn't take long for him to dive into his new Super Mario Bros. bed! It was just amazing to see him so happy! His response was so worth the time and effort put into this transformation. He is so incredible! I just love him SO MUCH!!!

I have to share this next photo because it was stinkin' hilarious when I first saw it as I looked through all of the pictures I had taken of the big reveal. This was LO's reaction when she first saw Chase's new room. You could say she was pretty surprised, too! Bwahahahahaha!

And here she was just seconds later. She really loved it and was so happy for Chase!

Awesomesauce, right?! So are you ready to take a look at the exciting details? So many fun projects and purchases to bring it all together. Let's take a look! Oh, and links to the sources of my inspiration are in {brackets}, while links to the products I purchased are not.

To begin, we needed a Super Mario themed bed (duh) as the focal point of the room. I picked up this Super Mario Sheet Set and made the red "M" throw pillow, then added Chase's Super Mario stuffed friends to complete the look. We painted the accent wall behind his bed a shade of blue similar to the sky from Super Mario Bros. called Grandma's Sweater by Benjamin Moore. Then I added these vinyl decals from eBay to create a fun mural above his bed.

Next up, I picked up a KALLAX shelving unit from IKEA along with four DRĂ–NA storage bins in yellow to create these adorable {Question Block Bins}. NOTE: I used no-sew iron-on adhesive to attach the fabric question marks and circles to the bins rather than the process used in the inspiration post.

Seriously. This is the cutest. thing. ever. amiright?? This little {Bob-omb Lamp} is one of my most favorite little projects in the room! I purchased this adorable mini ceramic globe lamp, painted the eyes and cut out the feet from a piece of yellow card stock. It was one of the easiest and quickest projects! Love it.

If the Bob-omb Lamp is my most fave, these {Piranha Plant Lamps} are a very close second! Two TERTIAL work lamps from IKEA, a bit of hand-painting, spray-painting, and wire-splicing, and BOOM. Adorable! These lamps are perfect for reading!

This next project was another favorite (there are so many!). I found a {Super Star Canvas Print} on zulily as my inspiration and customized my own design with the help of a talented designer friend. Because of course, my sweet little guy is the most invincible person I know!

No 6-year-old's room would be complete without a nightlight, so I picked up a set of Star Shaped Night Lights and painted them yellow. They are LED lights and not very bright, so I was glad that they came as a set of two.

When we updated LO's room back in 2013, I covered her light switch plate with fabric and modge podged it like a madwoman. I decided to rock out the same technique for Chase's new room. If you need a tutorial for this project, I found this {Upholstered Light Switch Plate} that follows my steps pretty closely. Such a fun, easy, and cheap way to add some fun to a room!

Haha! This next one was hilarious! We all worked together as a family to put a 550-piece Super Mario Bros. 2 puzzle together about a month or two ago. It had been on our dining room table for quite some time before I swiped it away into my secret work area to frame it for Chase's room! I watched this YouTube video on {How to Use Jigsaw Puzzle Glue} since I hadn't done it before, and it was super easy! The best part was that it took forever for them to notice the puzzle was gone, and once they did, they were crazy disappointed thinking I had taken it apart and put it back in the box. All that hard work, right!? So they were both so excited to see it up on the wall!

I saw this super cute {Cloud Garland} on Etsy and decided to make my own to hang up on the accent wall we had painted. I so love how cute it turned out! I can see this sort of thing as a super fun party decoration (because, let's face it, we'll probably see another Super Mario birthday party or two in our little guy's future).  :)

Oh! Oh! Oh! This next little project was super simple AND super cheap... my favorite! I purchased two of these Question Blocks candy tins from Amazon, had hubs drill holes in the sides of them, and put them onto the ends of Chase's existing curtain rod to create this fun {Question Block Curtain Rod}. Bonus? The kids loved the coin-shaped candies from inside the tins!

I picked up another set of vinyl Super Mario Wall Decals to put on one of the walls where Chase could easily reach them and rearrange them to create his very own Super Mario adventure.

How adorable is this {Pipe Trash Can}?? Another super simple and inexpensive addition to the room.

And finally, what little brother's new Super Mario room would be complete without a one-of-a-kind original artwork from big sis? Love.

Whew! I think we have a very happy 6-year-old Super Mario super fan. Awwwwww... LOVE HIM.

Hope you enjoyed this crazy lengthy recap of our big bedroom transformation project! And in case you observant folks are wondering where all of the adorable train decor ended up after we removed it to make room for Mario, you'll be happy to know it all found it's way down the hall to a brand new owner! More on that big reveal up next!

Monday, November 2, 2015

First Surgery... Six Years Later

Six years ago today, at 6:33 AM, I watched helplessly as my 7-day-old son was wheeled down a long hallway inside the Medical University of South Carolina, towards the Operating Room, to undergo his first life-saving open-heart surgery, the Norwood Operation. This was the last picture I took of him before he was wheeled away to the OR:

It would be a grueling, arduous 8 hours and 23 minutes before we received word that the surgery was complete. I can recall those moments in the PCICU waiting room in vivid detail, as if it were just yesterday that I helplessly awaited each and every update from the OR, informing me of whether or not my newborn baby was handling this open-heart operation as we had hoped and prayed. I remember who was there with us as we waited. I remember the sights and sounds of the waiting room. I remember the smell of the antibacterial hand soap in the bathrooms. I remember walking into the PCICU throughout the day to grab the key to the pumping room to develop a supply of milk to nourish my baby via ng-tube, since it was uncertain when or if he would be able to take a bottle. I remember walking across the street for lunch. I remember the relationships with other families in similar situations with their children that we established. It all seems so surreal -- like it was yesterday, but also a lifetime ago.

This is what I shared on my blog on November 2, 2009 after I saw Chase for the very first time following surgery:
Hubs and I got to see Chase for about 5 minutes once he was stable in the PCICU following his surgery. They had a blanket over him so I didn't see his open chest or any of the chest tubes, lines, etc. that were added during the surgery. He looked very peaceful and not as swollen as I was expecting, although we were told he would get more swollen over the next day or two. Luckily we were very pleased to hear he was already peeing out some of the excess fluid, which was a big blessing to know his renal system was functioning well so soon after surgery. We were also told they had been able to reduce some of the medications he was on as well! This is all very encouraging!!! 
I will admit I'm fearful of the next 24 to 48 hours as Chase's body responds to the major changes to his heart and circulatory system. I'm scared we're going to get a call at 2AM telling us something is terribly bad with him. But I know that's just my human side trying to prepare for the worst-case scenario, when truly I should be focusing on the miracle of what God did in Chase's life today and the peace He's given me for our future and our little boy! This is hard but I know it's doable with God in control of our lives. 
This is the first photo I took of Chase after he returned from the OR. There were so many lines, wires, medications... it was unbelievable to see my newborn baby like this. The nurse had placed a blanket over his chest so I wouldn't be able to see his beating heart, as his chest was left open following the surgery to account for swelling (it would be 3 days before the surgeon would close his chest).

Today, as I think of the past 6 years and the path God has brought us through, I cannot help but thank Him and praise Him for his love, mercy, and healing touch on my sweet son! Just last week, we had the honor and privilege of celebrating six years with this incredible boy! He is such an amazing, compassionate, and loving little guy and the biggest blessing in my life! ♥

Tuesday, October 27, 2015

Cardiology Update


I hate writing these posts. But the whole purpose of this blog is to help me remember important events, milestones, etc., and I know several of you who read my blog have been following Chase's journey with his congenital heart defect, so here goes!

Chase had his 6-month appointment with his cardiologist last Friday. We were curious how things would look because we've seen some not-so-great signs with Chase over the past few months. But let me back up a minute with a quick refresher of things (since it's been so long since I've posted regularly out here!):
  • 10/26/2009: Chase is born! He was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS), which basically means the left side of his heart didn't form properly in utero, and all of his left-side heart structures are too small to function.
  • 11/2/2009: Chase has his first open heart surgery, the Norwood, at one week old. This is the first of three surgeries to give him a chance at life, as this defect was considered fatal within the first two weeks of life as little as 20 years ago.
  • 3/3/2010: Chase has his second heart surgery, the Bidirectional Glenn.
  • 5/9/2014: Chase has his third (and final planned) heart surgery, the Fontan.
Okay, so that was a super-brief recap to get us to where we are now. So kids with HLHS have low O2 saturations at birth, like in the low 80s, and they pretty much keep the low sats until after their third surgery, the Fontan. After the Fontan, HLHS kids typically get up to their highest O2 saturations, in the high 90s, which is where they stay for their lifetime. During this surgery, they leave a small hole, or fenestration, between the extracardiac conduit and atrium. Typically this means their O2 sats will be a bit lower than the high 90s, for a period of time, until the fenestration is closed. Once it's closed, their sats reach the high 90s.

Here's a graphic representing post-Fontan blood flow, including the fenestration:

For many kids, the fenestration closes on its own over time -- usually within a year or two after the Fontan. For other kids, it does not. Chase falls into the latter category. His sats initially improved after his Fontan, from his usual low- to mid-80s, up to low 90s! His color was much better as well -- his nail beds were pink and his lips weren't as blue. Yay!

However, over the past 6 months or so, we've started to notice his coloring changing back to his pre-Fontan coloring (basically more blue than pink). We monitor his O2 levels at home, and we started to see them declining. At this point, they are back to where they were pre-Fontan (low- to mid-80s).

All of this brings us to the results of his appointment last Friday. I have to say here that he handled this appointment like a CHAMP. Weight, height, blood pressure on ALL FOUR limbs, O2 sats, echo... he was amazing!!

Well, his cardiologist agreed that his sats are lower than we'd like, so we are now awaiting a call from MUSC to schedule an interventional cardiac catheterization. During the cath, the interventional cardiologist with measure Chase's current pressures, then perform a test occlusion of the fenestration. Basically this means he will temporarily close the hole that was left during his Fontan surgery. Once the hole is closed, they will then measure his pressures again. If he responds well to the temporary closure and everything looks good, they will proceed with permanently closing the fenestration. This should cause his O2 sats to increase closer to the preferred range for post-Fontan kids -- the high 90s.

If he doesn't handle the temporary closure well, they will obviously not permanently close the fenestration, and I honestly have no idea what our next steps would be in that situation. We are praying that he handles it well, they are able to close the fenestration, and his sats are up to where we want them.

So, we are waiting for a call from MUSC (within the next week or two) to schedule his cath procedure. His cardiologist, hubs and I all agreed that we would prefer to get this done sooner than later, so we will probably be heading to Charleston very soon -- within the next month or two. This type of procedure typically requires an overnight stay for observation and monitoring, and we are hopeful it will only be one night (for those who don't know, hospital time is waaaaaayy different than "normal" time).

I will update here with more information as soon as we have a date set and/or additional details. In the meantime, please keep Chase in your prayers! We haven't discussed this upcoming procedure with him (or our other kids) because we don't want to stress him out with it looming over his head, especially since we don't even have a date set yet. But I'm concerned that he will be very unsettled by the idea now that he is definitely old enough to understand everything that will be happening. And unfortunately, the most recent hospital experience he will recall was his Fontan, which was a week in the hospital and a TON of tubes, wires, and general uncomfortableness. On the plus side, since he is older now, we should be able to help manage his expectations since we can explain everything in more detail now. Regardless, this isn't going to be fun for any of us -- especially Chase. We covet your prayers in the coming weeks!

Thank you to all of you who have followed along on our journey and supported us along the way. We are so blessed to have your love and support!

Monday, October 26, 2015

Chase's 6th Birthday!

Well, he did it! This miracle son of mine is now SIX. What a blessing!

Ready for a play-by-play of our last two days of celebration? Let's do it!

We celebrated big time with this kiddo this year. He wanted to party at the local fun park, so party we did on Sunday (the day before his actual birthday).

He started with some games in the arcade:

Then headed outside with his buddies for his favorite: GO KARTS!!

E, meanwhile, was on point all evening as the entertainment of the party. He was so in charge.

After some fun arcade games and attractions, we headed inside for dinner!

Again, Mr. E, totally cheesing up the place! Haha!

After dinner it was time for cake, of course!

Chase gave me very specific, detailed instructions for his cake this year. It needed to be chocolate, with chocolate frosting, and chocolate chips, and M&Ms. I think I was able to successfully create his cake vision!

Some singing and some cake later, it was time for presents! Yay!

Check out his face on this one (and his sister's, too!)... You can say he was a bit excited. :)

Super Mario Maker!!!

A few more gifts...

After Chase finished with his gifts, the table cleared out as all of the kids went back out to hit the arcade and attractions. But Chase? Well, he returned to his cake and ice cream of course! LOL!

When he finished his cake, he went back to the arcade for more fun! I think he was having a pretty good time...

I love LO's face in this one! And spoiler alert: Chase is actually a surprisingly good driver!

To end the party, we had Chase hand out little thank you gifts to our party guests. What a fun time we had!

This morning (his actual birthday) began with a relaxed, lazy morning in pajamas, playing his new Wii U and 3DS Mario games. Seriously, I keep finding more and more reasons to absolutely love homeschooling, and this was a win for sure! What a fun way to spend our day when we were all together, celebrating Chase, without a forced agenda! YAY! It wasn't until around 10AM that we had breakfast, which included, of course, birthday pancakes! Really, this guy is really six. I can hardly believe it!

After breakfast, it was time for school! We spent some time reviewing and playing games with our memory work, then we were off to lunch at Red Robin per the birthday boy's request. Somehow I neglected to get any pictures at lunch, including the singing and his birthday sundae. Crazy!

Our afternoon was pretty quiet (rest time for all!), then we played games before heading out for dinner, also by request, to IHOP for breakfast dinner! Chase made sure to bring along his favorite action figures...

Apparently the kids could order "scary face" pancakes since it's almost Halloween, and we definitely saw some scary faces!


E had to get in on the action! He's just so hilarious!!

After breakfast dinner, we headed home for the night, had a few more gifts for the birthday boy to open, and knocked out our bedtime routine with the kiddos.

What a wonderful few days we've had celebrating our miracle boy's 6th birthday! We are so blessed and so grateful for this kid and thank God for him and his special heart.

And to close, here is a special message from little E: