Friday, August 30, 2013

Four Months!

Happy 4 Months, baby E!

This little guy is the greatest! He's so laid-back and easygoing. Pretty perfect combination for a 3rd child, am I right?? He's been sleeping through the night since about 2 months old and I am so sorry I'm so lame that I haven't been posting more info and pics of this little nugget of sweetness! I promise myself (and grown-up E) that I'll do better so a certain little person doesn't end up with some crazy syndrome of being dwarfed in the shadow of big sis and big bro's blog highlights!

Here are a few outtakes from this morning. Side note: mommy was brilliant enough to time the photo shoot when the little person should have been napping! This my reasoning for his seriousness and lack of smiley-ness!

I just love him so!

Wednesday, August 21, 2013

Sweet Boy!

I thought I'd share some recent pics of our littlest guy, E, while his big sister and brother are getting all of their "back to school" attention...

Oh, wait -- what?? Did you catch that?? There are some pics of Chase mixed in! These boys sure do favor each other... only Chase never had as much "chunk" as E does. LOL!

Only the first and last pics are actually Ethan. The two in the middle are Chase!

Sweet boys!!!!!

First Day of Preschool!

Believe it or not (I choose not), my precious little Rock Star, "Baby Chase," began his first day of preschool. I am so full of emotions right now -- mostly feeling grateful, blessed, thankful... I can't believe that this day finally arrived! When you're told that your unborn baby would be born with half a heart and would die without 3 heart surgeries in their first 3-4 years of life, you don't have the luxury of imagining their first birthday, much less their first day of school. God has been SO GOOD.

I was VERY nervous about how he'd do. The ONLY time he's ever been outside of my, hubs', my mom's or my in-laws' care is when he attends his nursery/class at church. That's it. Every other moment of his life outside of church class he's been in my/hubs' care, a few select family members' care, or the care of an anesthesiologist and surgeon during one of his 9 surgeries/procedures.


He'd usually do great with his church class, up until a few weeks ago anyway. We were called to come get him from his class a few weeks ago and he WILL.NOT.GO.BACK. He straight up refuses, kicking and screaming, and there's no way we will ever get him back in that classroom. Nor do we want to. Obviously something left an impression and we have no choice but to move on. I tell you this only to say that his last/most recent experience with "going to class" has been extremely negative.

{{Insert my overwhelming concern for his first day of school here.}}

So the day finally arrived and I was NERVOUS. I had to wake him up, which (like his mommy) usually isn't a good thing. But to my surprise he jumped up out of bed and was super excited about his first day of school. We got through breakfast, getting dressed, brushing teeth and even... wait for it... brushing his hair. If you know Chase, you know he HATES having his hair brushed/cut/etc. so it was HUGE for him to sit in my lap for me to do his hair. Crazy awesome.

He walked into his new school (the same beloved Christian private school LO attended for K3 & K4), marched right into his classroom, and washed his hands (per protocol, thankyouverymuch) before finding his seat at the table and having some Play-Doh fun. It was the cutest thing.

Again, I was super nervous when it came time for us to slip out of the room, but I was already on such a high that he WILLINGLY walked INTO his class that I could tell he was going to be just fine. As expected, he waved us off while rolling out his Play-Doh and was nothing but smiles.

Thank you, Jesus! What an unbelievable answer to prayer!!!!!

When it was time to pick him up (just under 4 hours later), I peeked through the window and saw him eating his lunch with all the other kids like such a big boy. It made my mama heart proud to see how well he was doing! And boy was he super excited to see me, LO and E when we walked in! He told me how he got to finger paint and color and was just in such a wonderful mood.

When we went out to the car, he found a gift bag with some goodies inside (just like I did for LO after her very first day of school), so I let him open his gifts before heading home after his first day. I am just SO very proud of him. There just aren't words!! Just so proud.

Here are some pics from his awesome first day!

Monday, August 19, 2013

How'd THIS Happen?

Someone tell me how it's possible this little heart warrior of mine will be starting preschool TOMORROW!? I vividly remember wondering if this day would ever come -- if we would be lucky enough to have our sweet boy survive his first few days, then weeks, then months... To know he's THRIVED for almost FOUR YEARS and is starting preschool is an absolute blessing. We thank the Lord for this child and I pray he has a most wonderful first day of preschool!

Side note: I will be *that* mom in the morning -- the one huddled in the fetal position in a corner bawling my eyes out. Ya, that's me.

I just love him so!!!

Thursday, August 15, 2013

World's Best Mom

So I think E is gonna have that "third child" complex thing for sure. Here he is going on 4 months old and I have yet to post his birth story on the blog nor hang up a single picture of him at the house.

Horrible mom. Scarring my children for life since 2007.

On another note, I know I still haven't updated y'all on Chase's cath results or his Fontan timing. The short story is his cath went great, his pressures are great, making him a good candidate for the Fontan, and that's really all we know. We've scheduled an appointment with his local cardiologist next month as he will share any news/updates from the team at MUSC at that time, but honestly we aren't expecting much more than confirmation that we're still good for next spring. I'll update again after that appointment.

- Posted using BlogPress via my beloved iPhone 5

Tuesday, August 13, 2013

LO Humor

I couldn't help but document a humorous moment with LO here. This was from yesterday when we were eating lunch. She's talking about the powder drink mixes for bottled water:
"Mom, I know how to do it. Open the bottle, add the powder stuff, shake it up and BOOM. Lemonade."

The best part was that she said it totally dry and very matter-of-fact-ly.
Love her.
- Posted using BlogPress via my beloved iPhone 5

Friday, August 9, 2013

Thank You!

Just a quick post to say Thank You to the family and friends who have prayed us through another big heart procedure on our sweet Chase. The tally is up to 2 heart surgeries, 3 heart caths, 2 bronchoscopies and 2 outpatient surgeries. This boy has been through a LOT, with at least one more heart surgery to go.

We just simply couldn't walk this journey if it weren't for the grace of God and the love and support of our family, friends, neighbors, Facebook friends, twitter followers and blog readers. I send much love and gratitude to each of you!!!

I promise I'll write a post soon with the findings from today's cath and the plan for Chase's last scheduled heart surgery, the Fontan. For now my focus is on getting Chase settled into bed (after some late-night Mario Wii per his request) and getting little E fed and settled down for the night. Oh, and hopefully a long, restful night for mommy & daddy, too!

Thanks again to all of you for supporting us though our journey.

❤️ hugs!

- Posted using BlogPress via my beloved my iPhone 5

Cath Complete!

Just got the call at 12:05 PM. Going to see my boy.

- Posted using BlogPress via my beloved my iPhone 5

Cath Update #4

Our fourth update came in at 11:37 AM. They are pulling out the catheters now and preparing to put pressure on the insertion sites. This means they are finishing up and will have him up to recovery soon. Keep praying!!

- Posted using BlogPress via my beloved my iPhone 5

Cath Update #3

Just got our third update at 10:51 AM. They are coiling some collateral vessels and we'll get another update in about an hour. Please keep praying for my boy!!!

FYI: "Collateral vessels are abnormal blood vessels that connect the aorta with the pulmonary arteries, but they are normally small and are not used. Children with congenital heart disease have enlarged collateral vessels, which can let blood flow from an artery to an adjacent artery or it may carry blood downstream and then back to the same artery. To stop this flow and pumping blood into the lungs, coil embolization creates a blood clot which stops this reverse flow."

- Posted using BlogPress via my beloved my iPhone 5.

Cath Update #2

Just got our second call at 10:07 AM. They ended up using three access points, one in both legs and one in the right side of his neck. We were not expecting this. They are doing the contrast dye angiograms now.

Please keep praying.

- Posted using BlogPress via my beloved my iPhone 5

Cath Update #1

Just got our first call at 8:57 AM. He went under the anesthesia fine. They have femoral venous access in his right leg and are assessing arterial access from either his neck or left leg. Will get another call in about an hour.

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Cath Begins

They took Chase back for his cath around 7:45 AM this morning. We arrived at the hospital at 6:45 AM and did some quick vitals. His o2 was 91%, which is well above his normal range of 82-85%. Weird. His BP was fine and thankfully there wasn't much else to do this morning since we did the full work up yesterday.

Chase handled things well, as long as he had his iPad in front of him (seriously, Best.Investment.Ever.). He refused to put on his gown (no surprise there) and refused to take his Versed (a.k.a. Happy Meds), so daddy and I had to hold him down for that. No worries, though. About 10 minutes later he was feeling the effects of it and had us laughing, forgetting what was ahead if only for a moment.

He wasn't "happy" enough to leave with the team, so mommy & daddy got to walk with him and the anesthesiologist down to the cath lab. He was starting to get so out of it. But when Dr. W picked him up from the gurney to carry him into the lab, he fought with whatever strength he could muster, which really wasn't too much by this point. I felt horrible but at least there wasn't any kicking or screaming.

I kissed my boy, told him I love him and to be brave, and watched him be carried into the cath lab for his procedure.

As the door closed, I found that I couldn't move. I stood there. Still as could be. Tears streaming down my face. My goal was to hold it together while I was with him, to be strong for him and not let him see the fear or worry I was filled with. Once those doors closed, I couldn't hold it together any longer.

It's so hard.

Being a mother to a child with a complex congenital heart defect is hard. So very hard. We have to do things that no mother should have to do. We have fears that no mother should have to fear. We have scary, uncertain futures ahead for our children that most mothers don't have. It's so hard.

But in the midst of my fears, and in the midst of the tears, I know Who holds my son's precious life in His hands. It's not me, not the doctors. It's my Lord and Savior, and without the knowledge of His love for me and my son, I could never get through a day like today.

I covet your prayers for Chase as he undergoes this heart catheterization. Our hope is that it remains a diagnostic procedure and doesn't require any intervention, although if they do find anything that needs attention, now is the time to address it. I'm hopeful Chase handles the anesthesia well and comes out of it without any pain.

We should receive updates every hour to hour and a half. I'll post updates here as I get them.

Thank you for your continued prayers for our sweet boy!

Here are a few pics from this morning:

Loving the iPad.

Versed on board and he's happy as a clam. Here he's putting the bubblegum-scented oxygen mask on Mickey.

The ride to the cath lab. He started in the middle of the gurney but started leaning over as we went along.

So. Very. Out of it. This was right before Dr. W took him into the cath lab. My sweet little Rock Star. I love him so.

- Posted using BlogPress via my beloved my iPhone 5

Thursday, August 8, 2013

Cath Prep

Today has been quite an eventful day and I have never been more proud of BOTH of my boys! We had an early morning start to get us to MUSC in time for Chase's pre-cath work up, but the boys were both champs in the car. E slept basically the entire time and went almost 6 hours before he was finally ready to eat again! I was glad he did so well since this was his first long trip. Chase enjoyed lots of movies and snacks and for the most part seemed okay with our trip. He did say he didn't want to go to Charleston because he didn't want "that boy looking in his ears" (his ENT doc's student at his last visit), but overall didn't have many complaints.

We had the work up completed in record time! Only about 2 1/2 hours for the EKG, height, weight, oxygen saturation and questions. And Chase was straight up AMAZING!!! He handled everything with ease and there were no major freak outs (THANK YOU, iPad!!!). He even asked questions and wanted to know what was happening the whole time. Obviously quite different than his last cath almost 2 1/2 years ago! We answered all of his questions and discussed each activity beforehand so he'd know what to expect.

Here's our boy getting his EKG like a mad man:

And who owned the echo?? Oh, that's right -- it was Chase!

After we met with our favorite pediatric cardiology interventionist to discuss the procedure and saw our amazingly awesome anesthesiologist, we got our game plan for the cath and headed over to ENT for a quick follow up for Chase's ear tubes.

And by "quick" I mean that we waited OVER 2 1/2 HOURS just to see his ENT, who literally spent about 8 minutes in the room, 7 of which was small talk!


Once we were finally able to leave the hospital, we went straight for -- you guessed it! -- ICE CREAM!!! I figured our big boy deserved a treat after the day he had (and the day he's going to have tomorrow).

Thanks in advance for your thoughts and prayers during Chase's cath in the morning. I'll post updates here as often as I can. We expect it'll take anywhere from 2 to 5 hours, depending on whether or not they need to do any coiling or ballooning.

- Posted using BlogPress via my beloved my iPhone 5

Monday, August 5, 2013

Another Heart Cath

Considering I haven't blogged in a while, it may come as a surprise to many of you to hear that Chase will be having another heart catheterization procedure at MUSC later this week. While Chase's special heart is something that is constantly on my mind, it's not something I choose to write about here often, unless of course we have heart-related news to share.

Some of you may recall that Chase had what was considered his pre-Fontan cath back in March 2011. The purpose of this cath was to confirm Chase would be a candidate for the Fontan, the third and final scheduled palliative surgery for his congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). This cath was supposed to be his last/only cath before his third heart surgery.

However, almost 2 1/2 years have passed since his last cath procedure, and we (his parents, pediatric cardiologist and surgical team at MUSC Children's Hospital), have all agreed that it would be best to get another peek at his heart before we schedule his Fontan, which will most likely take place next spring. So that means another heart procedure involving general anesthesia and all of the not-so-lovely risks of a heart catheterization procedure.


Please keep our little Rock Star Chase in your thoughts and prayers throughout this week as we prepare for his procedure. The last time we went through this he wasn't quite 1 1/2, so it wasn't terribly difficult to care for him since he wasn't able to verbalize his fears, concerns, etc.

This time around, we have a very opinionated almost 4-year-old on our hands, who will be VERY aware of what is going on around him and VERY unhappy with all of it. This one is gonna be hard on all of us (none more so than Chase, of course), considering we'll also have our hands full with our little 3 month old while supporting Chase through this procedure. Should be interesting!

Here's a pic of our little Chase following his March 2011 heart cath procedure:

We're praying he rocks out this procedure and that we don't find any surprises. If you're curious about his previous cath from 2011, you can read about that here.

Thanks for your prayers!