Cardiology Update

This morning Chase had a routine checkup with his cardiologist. We'd been keeping an eye on his tricuspid valve regurgitation at prior appointments, but overall anticipated a straightforward appointment today.

We began with the typical height and weight measurements, followed by blood pressure readings on all four limbs, an EKG, and an O2 check. Everything was looking fine until we checked his oxygen saturation reading. For some reason, it never climbed any higher than 92-93. In the past, Chase has usually had sats around 97-99, so this was quite a bit lower than we anticipated.

We went back for the scheduled echo to check heart function and get pics for the cardiologist. Chase was a happy camper watching Cartoon Network during the echo (we NEVER watch this channel/programming at home so of course he was glued in LOL!).

I was surprised/concerned when the cardiologist, Dr. H, came into the echo room as this has never happened before. He requested the tech obtain specific views of Chase's LPA (left pulmonary artery), aortic arch, and of course tricuspid valve.

When the tech finished with what he thought the doctor needed, he left to go ask Dr. H to come back in to take a look to ensure he had everything he needed. Only Dr. H was with another patient, so our tech brought a second tech in (presumably more experienced) to double-check his work. She worked for a bit, then sent the first tech to find Dr. H. The cardiologist came in a second time and sat down at the echo machine (also never happened before). Dr. H looked around and was able to see most of what he wanted to see. Chase was such a trooper considering the echo took so much longer than usual!

Dr. H performing Chase's echo

Once the echo was complete, we went back to the exam room to discuss Dr. H's findings. Ultimately everything looked great -- heart function, tricuspid valve, LPA, liver, etc. However, Dr. H suspects that Chase may have a few collateral vessels that have formed, which would account for the decrease in oxygen saturation. His plan is for us to monitor Chase's O2 at home over the next 2 to 3 weeks to see if he holds around 92 or continues to slowly decrease. If it holds or continues to decrease, we will likely head to MUSC in Charleston for a heart catheterization.

This wasn't exactly the news we were hoping for, but we're grateful to find what we did so we can address it before it becomes a bigger problem. Please keep Chase in your prayers over the next few months as we make decisions about our next steps. If he's going to need a heart cath, we would definitely like to do it before Cinco makes his arrival. I'm trying not to stress out over what will unfold in the next few months. I know God has a perfect plan for this perfect boy of mine, and I fully trust Him!

For the first time in as long as I can recall, Dr. H wanted to draw some labs on Chase to check blood count, heart function, etc. So we left his office and had Chase's blood drawn at LabCorp. Y'all. He was NOT a fan. He got crazy worked up about it when I just explained to him what we needed to do. I felt awful. When it finally came time to have it done, I walked him through everything as best as I could and tried to settle him down. Bless his heart. This kid, who's been through three heart surgeries, countless heart caths, and a slew other procedures, flipped a major nut about one tiny little blood draw. Ultimately, he did great and they were able to get three vials for the tests Dr. H ordered. We finally we ready to head home, but not before a not-so-quick trip to Chick-fil-A during the lunch rush on a crazy rainy day! LOL!

Thanks for following along on Chase's heart journey and keeping our family in your prayers. Hugs to all!

"The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."    -- Philippians 5b-7

Heart Cath #4... Here We Go!

We arrived in Charleston for Chase's 4th heart catheterization last night and had a relatively restful night, all things considered. Daddy thought 20 oz. of Gatorade at 9 PM would be a good way to get him hydrated the night before the procedure. He was literally running circles in the kitchen like a madman at 10 PM. It was insane! And hilarious!!

We arrived at MUSC Children's Hospital this morning just after 6 AM. He walked in like he owned the place! Haha!

Chase has been in good spirits all morning, but he has had a moment or two where he told me he was scared. I reminded him how many people love him and are praying for him. He's been such a trooper!

We got through registration and went through the work up in the Same Day area. He was a little agitated but did a great job overall.

He didn't love the idea of taking his "happy medicine" (Versed), but not long after we were able to get that in him, he turned into a hilariously happy camper!

Around 7:45 AM, they came by to wheel him down to the Cath Lab. It's always bittersweet watching him leave our care and head into a procedure or surgery, but we know he's in good hands.

Thank you for your prayers today during Chase's procedure! We will keep you updated as we get our hourly phone calls from the nurse.

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! ♥

We Need YOUR Help!!!

Friends and family, please help us reach our goal of nationally recognizing February 7-14 as Congenital Heart Defect Awareness Week! This will be a HUGE step forward in raising awareness, and awareness leads to funding, and funding leads to new and innovative TREATMENTS for Congenital Heart Defects -- like Chase's half a heart.

It literally takes less than a minute to electronically sign this petition and confirm your signature in the email you will receive. PLEASE share this with your friends!!! 

Please click here to sign the petition!

Thank you for doing your part to help raise awareness and fund the treatment of Congenital Heart Defects!!!

Make-A-Wish and Macy's... National Believe Day!

Whew!

It's been a whirlwind few days and we are still very much in the midst of the fun, but I wanted to take a few minutes to write about our day last Friday... Macy's National Believe Day!

In case you happened to miss it, Chase's Make-A-Wish wish was to MEET MARIO. Or Mario come to life. Or have a Mario experience. However you look at it, this boy wished for MORE MARIO in his life.

The fun started on Friday with a phone call from Mario himself. Literally, THE guy -- the one and only guy -- from Nintendo who is responsible for voicing Mario. Really, THE guy. It was amazing!

Of course, we were all so excited about the call that we didn't answer it in time... but he left us a voicemail. Hilarious! We had been expecting that call for WEEKS (hubs and I, not Chase) and yet we couldn't even answer it in time. It kind of worked out in our favor because now we have the sweetest voicemail from Mario! And he called back a few minutes later, which was AWESOME.

Chase doesn't get many phone calls, so he wasn't exactly sure what to do. He answered Mario's questions by shaking his head yes or no, but didn't interact very much or ask any questions himself. But it was still adorable.

A few pics of Chase on the phone with Mario...

Somebody else was pretty excited to hear Mario was coming all of the way from the Mushroom Kingdom for a special visit with Chase!

Love this beautiful girl. She was so excited and so happy for her brother!

Next thing we knew, a limo arrived to take us to Macy's to meet Mario! Chase was excited about the long car. :)

Here he is posing for a picture before getting in the limo.

We have some pretty excited people in the limo -- ready to meet Mario! Everyone was there... Mario, Luigi and even Princess Peach!

In the limo on our way to Macy's!

We pulled up to Macy's and met with our amazing wish coordinator, Jodi, who was ready to walk in our star to meet his hero!

There were lots of balloons and people waiting inside to greet Chase on the other end of the red carpet!

Here's our boy Mario as he entered Macy's on the red carpet. I was SHOCKED at how well Chase handled the attention. He does NOT like surprises and I could easily tell he was overwhelmed, but I also watched as he processed everything and ultimately made the decision to go forward, one step at a time. I was so so so proud of him! I know it took a lot for him to react the way he did instead of hiding behind us the entire time, and I just can't say enough how proud of him I am!!!

And there he is... THE one and only Mario!!!!!!!!!!!!!!

After meeting Mario, Chase was excited to be given the opportunity to write a letter to Santa (along with big sis, LO). It seems he'd like a Mario Movie! I was so impressed that he took the time to write out his letter and sign his name. Such a sweet boy!!!

Time to mail the letters to Santa!

After the letter-writing and mailing, it was time for Chase to ride on his very own Mario Kart! Yes, Macy's gave him a Mario Kart and let him drive all throughout the store! He even chased Mario around a few laps!

As if the visit wasn't amazing enough, it seems Macy's wasn't quite finished making this boy's dream a reality. They gave him a H-U-G-E Macy's gift card, his very own RED Nintendo 2DS and three DS games he really wanted.

Our littlest one, baby Luigi, certainly wasn't left out of the fun. Here he is posing on big brother's Mario Kart!

Here are just a few of the outstanding Macy's friends who made this day possible. We are so grateful to Macy's, Nintendo and Make-A-Wish for making our little heart warrior's wish a reality!

And here's a short clip from Macy's that summarizes Chase's day quite nicely!

As if all of this weren't awesome enough, next, Make-A-Wish would be sending us off to New York City to visit the Nintendo World Store! Stay tuned for more!!!

A HUGE Announcement... #MAW4Chase!

NOTE: Chase doesn't know ANYTHING about ANY of this except that something AWESOME will be happening next Friday. So please help us out by not mentioning anything to him or his siblings. :)

We are completely thrilled, humbled, grateful, excited and honored to announce that our amazing heart warrior, who you may recall was approved to receive a wish from Make-A-Wish^® back in June, will be receiving his very own wish...

NEXT FRIDAY, DECEMBER 12th!!!!!

((gasp!))

Can you even believe it?! We are literally (okay, you know me too well---"figuratively") speechless at the incredible events that are about to unfold in our sweet boy's life in just over a week. And I am going to reveal ONE of the MANY astonishing components of his celebration to you today!

Surely you've heard of the Make-A-Wish^® Foundation of America, right? If not, here's a little introduction to this amazing organization:

Make-A-Wish^® grants the wish of a child diagnosed with a life-threatening medical condition in the United States and its territories, on average, every 38 minutes. We believe that a wish experience can be a game-changer. This one belief guides us. It inspires us to grant wishes that change the lives of the kids we serve.

And you've probably visited a Macy's department store at one time or another in your lifetime. But have you heard of their partnership with Make-A-Wish^® called the Macy's Believe Campaign?

Beginning on November 7th, children across the country are invited to drop off their letters — stamped and addressed to Santa at the North Pole — in the Santa Mail letterbox at any Macy’s store, or create and send letter online at macys.com/believe. For each letter received, Macy’s will donate $1 to Make-A-Wish, up to 1 million dollars, to help grant the wishes of children with life-threatening medical conditions.

A big part of Macy's Believe Campaign is National Believe Day, which will be celebrated on Friday, December 12th:

Friday, December 12th is National Believe Day! On this special day, Macy’s will help grant wishes across the country for children with life-threatening medical conditions. Join in on the magic that makes these wishes possible by visiting your local Macy’s store and dropping off a letter to Santa.

If you've been following along so far, you may have already come to this exciting conclusion: Chase will be granted his wish at our local Macy's on Friday, December 12th as part of National Believe Day!!!!! Can you believe it?!?! What an incredible privilege for our family but most especially -- our Rock Star, Chase!!!

***** To our local family and friends! *****

PLEASE join us at Macy's (at our local mall) on Friday, December 12th at 12:45 PM to witness Chase's arrival and his amazing wish unfold -- just look for the red carpet! I know it will be extra special for him to see familiar faces and it will be so meaningful to us to have the love and support of those of you who are able to join us for this incredible, once-in-a-lifetime experience for Chase!

I know so many of you have followed our journey with Chase from his prenatal diagnosis of Hypoplastic Left Heart Syndrome, through his 1st heart surgery, 2nd heart surgery, 3rd heart surgery and every procedure in between. But you've also been there to celebrate with us over the past 5 years, most recently with his amazing milestone 5th birthday party -- and all of the holidays and celebrations in between! We are truly so very grateful for the love, support, prayers and kindness of each and every one of you who have impacted our lives in such meaningful ways. And we know, if given the chance, you would want to do something special to honor Chase and your loving support of our family.

I want to tell you that YOU CAN MAKE A DIFFERENCE! It's super simple, a lot of fun for kids of all ages, and super easy to do. And it would mean the world to us as we prepare for an exciting, eventful few days courtesy of the amazing folks at Macy's and Make-A-Wish. Here's all it takes:

Write your letter to Santa and drop it off at your local Macy’s store, or create and send your letter online at macys.com/believe today. Ask your family and friends to write letters, too. Spread the word and help support Make-A-Wish this holiday season.

Easy enough, right? Make-A-Wish will receive $1 from Macy's for EVERY letter sent to Santa! Would you please consider supporting Chase's wish coming true by helping to give back to the incredible organizations making it possible? I believe in you!

Once you've either dropped off your letter or submitted your letter online, please post a shout-out (or, even better, a photo of you/your child with their letter) using the hashtags #MAW4Chase and #MacysBelieve and tag @makeawish, @makeawishsc and @macys to show your support for Chase as well as Make-A-Wish and Macy's Believe Campaign! Twitter, Facebook or Instagram... any/all social media options would be great to help raise money for Make-A-Wish to grant the wishes of other incredible children like Chase!!! ((Sorry, Mom, if all that "hashtag talk" was super confusing for you!))

A certain special someone is going to be THRILLED by some special magic that is about to enter into his world in 8 short days! Stay tuned...

Chase -- Halloween 2014

DISCLAIMER: Hubs and I have worked with the amazing representatives from our local Make-A-Wish chapter and are VERY knowledgable and informed of the entire wish awesomeness that is about to go down. However, we have decided to guard the details VERY closely so we can ensure all of this will be a GINORMOUS surprise to our sweet little guy on Friday, December 12th. We look forward to seeing him receive his wish and to sharing this exciting surprise with each of you who are able to join us for the big reveal! Thank you for your understanding!!!

A Time to Reflect

Hello?

Is anyone out there??

It's been over 2 months since my last post. Obviously homeschooling is a crazy full-time endeavor because I haven had a spare second to myself these past few months -- much less any free time to blog!! I'll give a major update soon (spoiler alert: things are great!), but for now, as I'm deep in the throes of preparing for Chase's FIFTH birthday, I'm letting myself be consumed with the nostalgia of his birth.

Can you believe that??

FIVE YEARS.

It seems like so long ago, yet feels like yesterday. I looked back on the blog to see what I was thinking and feeling 3 days before Chase's arrival, and wanted to share those thoughts again today as I reflect on all we've been through and how very blessed we are.

More to come soon, I promise.

October 24, 2009

OhMyGoodness.

I'm truly having a hard time believing the time is almost here!

Today is SATURDAY.

I'm going to be admitted to the hospital TOMORROW.

Chase will be here on MONDAY.

It's all so surreal! I am happy to report that I finally got around to packing my hospital bag today. I guess that's part of what makes an induction so convenient -- I can plan accordingly. And it's no surprise to me that Chase hasn't shown any signs of making an early debut. But now that the bag is packed and I'll be heading to the hospital in less than 24 hours, I think it's time for it to finally settle in that I'm getting ready to have a baby!

Although the future is VERY scary to me and I fear for my son's health and survival in the coming days, I know that ultimately we are all in God's hands and that He has a perfect plan for my family. I'm not at all loving that I will have ZERO control over our circumstances. I'm not loving the fact that I most likely will not be able to hold my son for the first time until the night before his surgery, which very well might not be scheduled for 7 or more days after he's born. I'm not loving being 3-1/2 hours from home -- from our friends, our family, the house we call home. It's really weird to prepare to go to the hospital to give birth to a baby that you know you won't be bringing home with you anytime soon. I almost feel like I'm just going in for a "procedure" of some kind, and then a few months later, I'll get to go back and pick up a baby to bring home with me. It's so strange! I've never felt anything like this before. But I'm truly anticipating that God will do wonderful things over the next several weeks and I'm so grateful I get to witness His work first-hand!

Five Years Later

FIVE YEARS AGO TODAY.

It seems like a lifetime ago, yet I can recall each and every detail so vividly and clearly.

We weren't expecting it. We certainly didn't ask for it. We never dreamed it would become our reality.

And yet, there we were. We found ourselves in a Perinatologist's office and were awaiting the official results of the high-risk ultrasound we just completed on our unborn baby boy -- our first son -- our sweet Chase.

There are no words to express how it feels to hear the child you are carrying inside you has a heart defect that is fatal without a series of invasive treatments beginning immediately following his birth.

There are no words to express how it feels to have the joy and expectation of your child's healthy future so suddenly ripped from your heart.

There are no words to express how it feels to fear leaving the hospital with empty arms and a broken heart rather than with your new bundle of joy.

There are no words to express how it feels to become a "Heart Mom." But that's exactly what I became that day. And now, exactly five years later, I wouldn't trade a moment of it for the world! Of course I wish my son had been born healthy, but God---in His infinite wisdom---knew that we were the perfect parents for Chase, and we have been blessed beyond measure to see Him working right in front of our eyes! Chase is every bit a living, breathing miracle of the love and blessings of God and I could not be more thankful to be on this journey as his mommy.

But I often think of how our world was turned upside-down that fateful Tuesday morning. I can easily recall those unimaginable emotions I had never before felt in my lifetime. I remember what it felt like to be told my unborn son was not healthy and learn how his future was very much in jeopardy.

On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. G, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the perinatologist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. H. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. H did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

I have never allowed myself to imagine the future and have always taken things one day at a time -- living in the moment as best as I could. I was afraid to believe we would have our boy with us for even 5 days, much less 5 months or 5 years! Or that he would be living and thriving and truly enjoying his life, with just half a heart? It was beyond fathomable.

But as I look back and reflect on the past 5 years, I see that I've learned something incredibly valuable:

 God gives us exactly what we need, right when we need it. 

I never could have made it through the last half of my pregnancy with Chase without God giving me the peace I needed to make it through.

I never could have delivered my son and watch him be whisked away, waiting over two hours to hold him for the first time.

I never could have sat by his bedside for 6 days, patiently waiting for my second opportunity to hold my newborn baby---the night before his first open-heart surgery at 7 days old.

I never could have watched as my tiny baby rolled down the hallway to the OR -- not once, or twice, but a total of SEVEN times so far---three of which were to repair his tiny heart.

I never could have made it through the past five years without God providing me with exactly what I needed, right when I needed it.

His grace. His peace. His love. His mercy. His healing. His faithfulness.

We are so blessed! This boy is absolutely amazing and I praise the Lord for allowing me the privilege of being his mommy!

I LOVE YOU, MY SWEET CHASE!!!!!

Four Weeks

Four weeks ago today. Still so hard to believe what a miracle this child truly is. We are so blessed.

A Big Announcement...

I didn't want to say anything before it was official, but I received the letter yesterday, so it's official!

Chase has been granted a wish from

!!!!!!!!!!

I must say, this is a weird, bittersweet, strange feeling. Wishes are granted through MAW for children with life-threatening medical conditions. No one wants to be in that boat, but when you find yourself there, you want to do everything you can to give your child the very best life possible!

And I'll be honest -- we are very encouraged by Chase's amazing strength (and stubbornness) as he's battled his Congenital Heart Defect (CHD) through 3 successful heart surgeries to essentially reroute his body's normal circulation to create an entirely new physiology with only half a heart. Our expectation, hope and prayer is that with God's continued hand of protection on our boy, he will have a very bright, normal, LONG life ahead of him. And for that, we are truly grateful and blessed beyond measure.

But he was dealt a rough hand. He had a very rough start. Open-heart surgery at 7 days old. A second at 4 months. A third at 4 years of age. Not to mention 3 heart catheterizations, countless procedures, echos, EKGs and a daily medication regimen that he will continue for his entire life. Not to mention the very real possibility of a heart transplant at some point during his lifetime.

Those reasons, to me (as well as his cardiologist and the amazing staff at MAW), are more than enough to qualify him for this once-in-a-lifetime opportunity. And I couldn't be more thrilled for him.

Stay tuned for more as we move forward with #MAW4Chase!

But first, here are a few pics of my little goofball learning about his Make-A-Wish opportunity. Naturally, big sis was pretty excited about it, too!

Cardiology Appointment Results

Chase had a great appointment this morning! He cooperated wonderfully for the four BPs, O2, weight and height. He was not, however, in the mood for the EKG. I couldn't blame him though -- 12 stickers all over his chest less than 3 weeks after heart surgery? No fun for my poor guy!

He did quite well for his echo, and then it was time to wait on Dr. H to review everything and examine Chase. He was very pleased with everything!!! He decreased his Lasix from 3x/day to 2x/day, so Chase will be glad about that! Hopefully we'll wean off or down to 1x/day when we go back in 2 weeks.

Dr. H also decided to put Chase back on an ACE inhibitor. He had been on Enalapril since his Glenn in March 2010, but MUSC discharged him after his Fontan without putting him back on it. Dr. H says that he wants him on this med due to his tricuspid valve regurgitation, so he prescribed Lisinopril, which is only 1x/day (whereas Enalapril had been 2x/day). We expect he'll be on the Lisinopril along with his aspirin for life.

So it was a great appointment today and we're very pleased with how things look! It's wonderful to be post-Fontan and we're hopeful that soon we'll get down to cardiology checkups only once per year going forward!

Way to Rock the Fontan, Chase!!!

Cardiology Appointment

Chase has a cardiology appointment with his regular cardiologist this morning. It should be a full work up with echo, chest x-ray, EKG, etc. Please pray that be cooperates and that the results are great! I'll share an update after we're done!

Thanks, friends and prayer warriors!

Post-Fontan Home Update

We've been home for 3 days now and it sure is wonderful... well, mostly! We arrived Sunday evening and managed to unload both cars, unpack most of the suitcases, eat dinner, and get the kids bathed. That was a pretty big success for us!

Monday involved 12 loads of laundry and a bit more unpacking. But mostly it was just this weird feeling of not knowing what to do with myself! We had an expectation that we'd be in Charleston for a month, so to be back home after less than 2 weeks? It's been an adjustment, at least mentally for sure. Hubs hasn't returned to work, LO hasn't (and won't be) returning to school and it's just been a bit weird all being at home together. My guess is hubs will return to work after the holiday weekend on Tuesday, and hopefully I can start to work more diligently on LO's homeschooling (at least adding Bible to her existing math and reading work). I'm also hopeful to have a "Water Play Day" in the backyard as a way to celebrate the end of the school year and to celebrate Chase's rocking of the Fontan.

Tuesday was just like Monday, except we knocked out an early morning park run for the kids to play, followed by the dreaded Walmart and grocery store runs. At least now we're stocked up on the essentials and can actually eat meals at home again! Score! Oh, and I should mention that Tuesday morning started with Chase coming into our room and showing us his chest... he had peeled off all but 2 of the steri-strips that were covering his chest incision. I about fell out of bed! Those were supposed to stay on and fall off on their own, usually at around 14 days post-op. Apparently they had been itching him so he peeled them off. I'm really hopeful he didn't do any permanent damage! Haha!

This morning we had a post-surgery follow up with the cardiologist. I expected a chest x-ray to check for fluid and possibly an echo, but they didn't do either. He sounded fine and they didn't see any reason for the additional tests today. But really I think it was because Chase's usual cardiologist was traveling so we had to see a different one, and they didn't want do make any changes -- they'd rather let his cardiologist do it. Hopefully we can decrease his Lasix from 3x/day to 2x/day when we go back next Tuesday to see his regular cardiologist as he really doesn't like that med. In fact, he's been continuing to fight us on every liquid oral med. It's terrible giving him pain meds (Tylenol or Oxycodone) because be fights like a madman! The doctor did remove he stitch that closed Chase's mediastinal chest tube site today, so at least that was done!

So for now it's just a matter of figuring out our new post-Fontan normal and doing what we can to help Chase settle down with his new physiology. He's been showing what I'd almost classify as signs of PTSD, for good reason! Literally everything is a huge battle with him, from eating to bathing to walking 10 steps to the bathroom. Like, everything. Seriously. It's insane. Please pray for lots of patience and understanding for this tired, worn out mama -- and for daddy who has to take on the extra workload when mama runs away for a mental health break!!!

I also want to mention again how very grateful we are to the many, many, many of you who sent cards, letters, gifts and other well-wishes to Chase, LO and E during the past few weeks. We've had a tremendous amount of support and are so very grateful to each of you! Thank you so much!!!

Now for a few pics!

FINALLY leaving the hospital...

In the car and headed home with Ginormous Mario.

Dinner at home for the first time post-Fontan!

E gets so excited playing with balloons!

Some fun at the park on Tuesday!

Sweet boy getting some sun with mommy this afternoon.

Sleepy boy wasn't too excited about a Walmart run on Tuesday...

More fun at the park!

This boy amazes me every day. He's our living, breathing miracle!

DISCHARGED!!!

More details to come soon, but I just wanted to let everyone know we were discharged this morning and we are currently on our way HOME!!!

Thank you to everyone who lifted us up in prayer and supported us through this journey. We appreciate all of the calls, texts, Facebook messages, cards, video messages and gifts from each of you! ❤️



- Posted from my beloved iPhone