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.

Post-Fontan Day 2

Today is Saturday (right?) and it's been a very lovely day for Chase! He's made some significant progress on his road to recovery! By around 24 hours post-op, he had already lost the breathing tube, the OG tube, his femoral arterial line, his rectal temp probe, and dropped from 9 med pumps to 4. That's amazing!!

He still needs some oxygen support with the nasal cannula at 2 liters, and still has his central venous line, 3 chest tubes, a line directly to his heart to measure pressure, and a Foley catheter. This is AMAZING progress!!!!!

The biggest question for post-Fontan patients is drainage. His chest tubes have had the typical volume of output at this stage, and if anything, it's been slightly less than expected, rather than more. This is excellent news!! The volume of chest tube output is the main factor in how long we'll be staying, and so far things look encouraging. But it's too soon to get our hopes up as it could increase once he picks up his food intake. Please pray with us that he doesn't have unusually large volumes of output!

He's was playing on the iPad while watching a movie, but is resting a bit now. He's on a pain med schedule to keep him comfy with additional doses of Tylenol and Oxycodone as needed. Overall his spirits are high (all things considered) and he's been a real champ!

Our plan for tonight is to continue to let things ride as they are. They're weaning him off the pumps and will most likely have him ready for the floor by Monday, I'd guess. Not much happens in the ICU over the weekend, especially when his surgeon isn't here to make the big decisions in his care. But tomorrow we'll probably lose the catheter and then either tomorrow or Monday, he should lose the heart pressure line and central venous line (these calls are all deferred to his surgeon). He'll be left with 3 chest tubes and most likely keep a bit of O2, and that's how I'd imagine he'll look when we head up to the step-down unit on 8D. I'd honestly be surprised if they kept us in the ICU beyond Monday with how well he's progressing, assuming a room is available to send us to on the floor.

Thank you as always for your continued thoughts, prayers and well-wishes for our boy! He is truly rocking the Fontan! God is so very good!

A few pics from our day...

Fontan Post-Op Summary

I know it's been a few hours since my last post, and I apologize for the delay in sharing a summary of Chase's day! We've been by his side since 2:45 PM and his ICU room has been buzzing all afternoon/evening as the team works to keep him comfortable and moving forward with his recovery.

As I mentioned in my last post, his surgery went perfectly and his surgeon was very happy with everything. The only "issue" they had was that for some reason, Chase came out of the OR red. Yes, red. They assumed it was an allergic reaction to something, but weren't able to pinpoint what. It quickly dissipated and his color was pretty normal when we first saw him. In fact, we finally saw a PINK(er) Chase! His oxygen saturation was much higher -- due in part to his new Fontan circulation and his 100% O2 ventilator settings.

It is now 9PM and we are working on slowly weaning him off of the ventilator so we can get the breathing tube out. He's still completely sedated and the plan is to keep him that way to allow him to continue to rest throughout the night. I plan to stay by his side, which is made much easier by the fact that we are in a "private" room in the PCICU. They are very family-centered here and allow us to stay bedside 24/7 if we choose (and believe me, I choose to do so!!).

I'll update more later as we make progress, but I'm hopeful it's a quiet night for us both.

Thank you for your continued thoughts and prayers for our sweet boy!!!


- Posted from my beloved iPhone

Fontan Update #4

12:05 PM

"They have just come off heart lung bypass, all is going well, have about 1-2 hrs to go before arriving to PCICU."

Fontan Update #3

11:06 AM

"They are better than half way there. All is going well."

Thank you for the continued prayers!

Fontan Update #1

Our first pager update was received this morning around 9:05 AM.

"All is going well in the OR, just getting through scar tissues as expected. Chase remains very stable. Will send hourly updates until they are finished."

Keep praying!!!

- Posted from my beloved iPhone

Fontan Surgery Begins

We were out the door this morning around 5:15 AM. Someone was in a pretty good mood considering how early it was!


We arrived at the hospital just after 5:30 AM this morning and headed to the surgical check in area. We had already registered for today's admission yesterday, but apparently there were some issues that resulted in a bit of a "re-do" this morning. Just a short delay before we were able to take Chase back to get prepped for his surgery.

The staff was great and had us quickly checked in. Before we knew it, it was time for his special versed cocktail. He did NOT want to take the medicine, so hubs had to hold him down while I had him drink it. They have him a small sip of water afterwards and he was happy. Literally less than 5 minutes later, he was REALLY happy!


We talked with our silly boy for a bit, then after lots of hugs & kisses, it was time to hand him over to the anesthesiologist to take him to the OR. Thankfully he was happy and didn't mind it one bit. We stood there and waved as we watched our son be carried off for his third heart surgery. Not surprisingly, it wasn't any easier than the last two times.


We are situated in the waiting area, armed with a pager that will give us hourly updates throughout the procedure, with the first update expected around 9AM. I will post the updates here as we receive them.

Thank you to all who are praying for my sweet Chase. Just thank you.


- Posted using BlogPress from my iPhone

Pre-Op Day Success!

For those interested in the specifics of tomorrow, we are scheduled to arrive at the hospital at 5:30 AM, they plan to take him back around 6:15 AM and should begin the procedure at 7:30 AM. It should take about 6 hours from that time.

Here's a summary of our day of pre-op. Chase was all ready to go this morning!







EKG? No worries! It literally took longer to put on the stickers than complete the test!





Chest x-ray was next. It was one of two hard parts of his day. He fought us on the chest x-ray big time!! But it was over quickly and we moved on to the next thing.

Oh, the next thing turned out to be his blood draw. Daddy held him down on his lap while they got it done. He was NOT a fan. Again, it was over fairly quickly.

After a quick escape to the cafeteria for lunch, we went back upstairs for his echo. He did awesome, per his norm.





After all of this, we waited to see the important players for tomorrow, including the surgeon, anesthesia team, cardiologist and more! All of our questions were answered, and we were pleased that we didn't have any surprises and that everything is as we expected it to be. It's weird being in this place again. Four years seems so long ago, but at the same time, it feels like we never left. Maybe because it's our reality 24/7, whether it involves surgeries or just the day-to-day life of loving a child with half a heart.

After the "fun" of pre-op, we went back to the house to grab our other two and my mom to grab dinner. These two! Love!!





After dinner it was time for some go-kart fun! This is one of Chase's favorite things of all time!!




A motorcycle ride later, and it was time to head back to the house.





But not before one last "pirate" pic with Blackbeard! Chase didn't get the pirate memo.





Then of course it was time for ice cream!




Considering it's almost 9:00 PM and we still need to get this guy a shower, I guess I'd better get back to work! I'll post updates tomorrow as we receive them during surgery beginning at 9:00 AM.

Thank you so so so much to all of you who are praying for us, texting us and thinking of us. We especially covet your prayers over the next 24 hours!! We are blessed by your love and prayers!!!

As a reminder, you can send cards, notes, etc. to Chase (as well as LO and E) at the address below:

PO Box 12406
Charleston, SC 29422

The End of Quarantine!!!

Quarantine ended today! Yay!! Grandparents arrived today to help us as we prepare for Chase's surgery. The kids were SO excited to see them!!! We had a productive day, including some errands, a home haircut for Chase and a dinner date for hubs and I! While we're no longer officially in quarantine, we still must be diligent in keeping Chase away from germs and sick individuals. But hugs & squeezes from grandparents are a-okay!!

Tomorrow we have a full day of pre-op scheduled: temp, o2, BPs (x4), chest X-ray, echocardiogram, EKG and a blood draw. We will meet with the anesthesiologists and our surgeon, Dr. Bradley. We also plan to take Chase to the Atrium (ginormous play room) for a bit as well. It'll be a long, exhausting day, but we're bringing plenty of distractions to help Chase get through the day.

Please pray for us tomorrow as we work through the pre-op requirements. Please pray they don't find anything that could potentially delay this surgery... elevated temp or white blood count (signs of a possible infection), etc. We need a clean bill of health to sign off and make Chase's Fontan a "Go!" As much as I'm dreading this, I know it's what he needs and we just need to get through it so he can be stronger & healthier.

Thank you for your prayers! And don't forget -- you can send well wishes to Chase at the address below! Thank you for your support!

Chase
PO Box 12406
Charleston, SC 29422

Quarantine: Day 16

Short & sweet.

Woke up to kisses and giggles from this one.




Road-tripped with these three:







Nobody napped a wink. E did some light reading and lots of eating!







Contacted by our credit card company. Three fraudulent charges had been declined. Our card has been compromised. Cancelled. New cards coming. Need to get that PO Box set up in the morning.



Dinnertime. Pizza and juice boxes ftw.







My pet horse, Princess.







Love this smiley one!







Now to get kids settled in for the night. And make fun plans for tomorrow.



Overall a very nice birthday!

Quarantine: Day 14

Day 14 of quarantine has been a slow, quiet day. This guy showed up in my room and proceeded to chat away about all sorts of things! It was wonderful waking up to this silly boy!

I just love him -- bed head and all!

After breakfast we set up a makeshift photo studio to take 1st birthday pics of E with his cake. We have the exact same shot of the older two and of course had to do one with E as well. It definitely wasn't my best work, but it'll do! It helps that I had an adorable subject to work with!

See these other two 1-year-old cuties with their cakes?

Of course I can't just share one pic from the shoot today... here's a few more!

Haha! Love him!

So I finally started packing today. Three kids' worth of clothes, toiletries, shoes, toys, books, activities... whew! It's quite overwhelming! I must admit that folding up those hospital gowns I made along with the rest of Chase's clothes and loading them up into his Super Mario suitcase was quite a reality check for me. This is really happening. Really.

Packing, playing with the kids, napping (seriously, I had The. Best. Nap. Ever. today!) and that was about it. Oh, Chase did decide to run outside in his pajamas this afternoon to hit the sprinkler hubs had set up to water the new sod that went in last week...

I called him inside for dinner and he proceeded to strip down out of his wet pajamas and enjoy his meal in nothing but his skivvies! He's seriously such a riot, this boy of mine!

And please excuse the horrible lighting, but I had to include one more pic of this guy. My baby!

I've noticed I don't have any pics of LO today. Weird! I'll be sure to make up for it tomorrow. ;)

Thanks again for reading these ramblings as we prepare for Chase's 3rd heart surgery in a few days. We are so in need of the continued prayer support of our family, friends and blog readers! Please keep us in mind as we make preparations for heading down to Charleston and getting Chase through everything that is coming his way. We just love our rock star so much and we just know God is going to do exceedingly and abundantly more than we could ever ask or imagine! To Him be the glory!!!

Quarantine: Day 13

Sorry for the delay in posting Day 13... Honestly having Chase's surgery date change unexpectedly has thrown me for a bit of a loop! I was just about to the end of the "holding pattern" before I could start packing, only to be hit with an extra two days of waiting!

But first, a few quick additions from Day 12 (Friday). That afternoon the kids had a blast flying kites before dinner.

Here's a little video of Chase having fun with his kite. :)

After the kite excitement, it was inside to watch Friday Night's Feature Presentation, Walking with Dinosaurs. The kids really enjoyed it! Along with the popcorn and juice boxes, of course (please pardon the mess).

Now on to Day 13. It is truly a blessed day when I get to sleep in... especially on a Saturday!!!


I guess there really isn't too much to talk about here. It was a typical Saturday. Some laundry, some cleaning, some grocery shopping and napping. Overall a lovely day!

We had a "picnic" outside last night for dinner. Hamburgers, corn on the cob, baked beans, pasta salad... lots of the kids' faves. Not surprisingly, E just about ate his weight in food! He especially loved the hamburger! We've definitely got a carnivore on our hands. A cute one at that! ;)

Yes, he's counting down how many bites he has left. Yes, he still has remnants of hot pink fingernail polish on his fingernails.

This girl has mommy's wild hair when it isn't properly cared for, but she seems to handle the afro much better than I do! I think she looks much cuter than I do anyway.

We followed dinner with ice cream cones, of course. There's an interesting story I'm calling "The Ice Cream Incident of 2014" that I must document here on the blog for my own memory purposes.
LO takes AGES to eat dinner. Literally, AGES. Everyone else is done and she's barely touched her plate (talk much?). Chase finished his dinner, so hubs went in and made him an ice cream cone. I'll be honest: it was ginormous. Way bigger than anything I would've made for a 4 1/2 year old less than 2 hours before bedtime. But whatevs, it was awesome. I ran out of room on my phone (no surprise there) and couldn't take any pics of Chase with his ice cream cone, but suffice it to say it was a large, chocolatey mess. So cute!
Ten light years later, LO finally finished her dinner and of course, was expecting an ice cream cone of her own. I went inside and prepared a modest 2-scoop sugar cone of deliciousness and brought it outside to her.
Her immediate response (complaint)?
"Why does Chase get a bigger one?"
I turned around and walked back inside with it. She immediately went crazy and followed me inside saying she really wanted it. Feeling that she was way too greedy with her behavior, I removed the top scoop from the cone and set it on a clean plate on the nearby counter. I tried to return the rest of the ice cream treat to her, but she was upset and complained again.
This then prompted a face-to-face conversation about how the world doesn't owe her anything. That she can't just expect everything she ever wants to be handed to her on a silver platter. That she has to earn things with hard work, good behavior, etc. And that if/when she does receive something, she had darn well better say THANK YOU and be GRATEFUL for what she does get, instead of complaining about what she's lacking. More or less, I felt like I had turned into my mother. ;) IMO it was a great heart-to-heart and I truly felt like I had made a difference in her world by teaching her a very important life lesson. I then offered her the ice cream cone again, and she sheepishly said thank you. Then I forced a hug from her, causing some giggles.
Before she turned to walk back outside, she turned to me and asked, "Can I have the other scoop back now, too?"
In complete and udder shock & disbelief, I walked over to the counter, picked up the scoop of ice cream, walked toward her and dropped it into the trashcan 2 feet from where she was standing. The look on her face was priceless! She then said she was glad for the ice cream she does get to have and headed outside to join the boys.
It was classic! I honestly think watching that scoop of ice cream hit the trash made the exact point I had tried to make with her using my words. She even mentioned it to me again later last night, and wrote about what she had learned in her diary for us to talk about at bedtime.
Classic LO.