Monday, July 24, 2023

The Story of Ian and His Big Heart

My son Ian has a beautiful heart. He's a really thoughtful and caring kid. Ready to help out whenever anyone needs it, and regularly puts others needs before his own. 

But that's not what this story is about. This story has to do with his physical heart. It's a Flowers Tale I wasn't sure I'd ever write up, but Ian has asked me to do it a few times now and he wants to read about a big time in his life. 

So in a post that's going to bring back a lot of memories for Theresa, myself, and the rest of the family, here's The Story of Ian and His Big Heart!

Theresa and I were thrilled when we found out that she was pregnant. When I learned that it was going to be a boy and I'd be a Daddy, everything became more real for me. I am now going to be responsible for another human life. It's a big responsibility, but we're going to have so much fun together. I thought of all the cool things I'd teach him, everything we'd do together, all the things we'd explore. We had big plans. It's a big and amazing world. 

In the hospital room, I remember Theresa and I sitting on the bed, exhausted after a few rough nights, but just talking. How could we possibly love something so much. How we'd do anything for him. It was a sleep deprived, emotional time. 

Once we got home, we were ready to start doing all the things that new parents do. We went out for evening walks in the stroller. We read books together at bedtime. He went off to his first pediatric appointments and breast feeding classes and everything was going great. Ian is brand new to this world and he's our whole world. 

About a week or so after getting home, we're all together in the living room and Ian is laying there with us in his crib. 
Joe - Do you think he's breathing a little fast? 
Theresa - What's normal for a baby? 
Looking it up online (thank you internet), normal breathing rates when resting is somewhere around 30 breaths a minute. When we timed him and saw that he was breathing around 60 breaths a minute we became concerned. A quick call to his pediatrician confirmed that this was abnormal and we had an immediate appointment to get him seen. 

Our pediatrician listened with his stethoscope and didn't like what he heard. 
Doctor - He's got a murmur. And it sounds pretty loud. I'm going to send you to another hospital so they can take a better look at it. 

As Theresa and I drove over to the hospital, with Ian in the back, we were calm on the outside, but freaking out on the inside. While I drove, Theresa looked up what having a murmur could mean. What she saw wasn't very encouraging. Researching symptoms online can be scary and it was hard not to see the worst case outcomes. 
Once we arrived, they got us in right away. Ian was laid down beside Theresa while a tech took an echocardiogram of his heart. From this, you can see blood flow through the heart, seeing if blood is going places it should, and also going places it shouldn't. 
Our pediatrician knew a cardiologist and was able to get the data sent to be reviewed right away. The cardiologist called Theresa and I a short time later with the news. 
Cardiologist - First, he's not in immediate danger. (we were overwhelmed with relief) But it does look like he has a pretty large VSD in his heart. We're going to need to see him right away. 

What is a VSD? Theresa and I didn't really know either. 
VSD stands for Ventricular Septal Defect. 
In a normal heart, blood comes from the body into the Right Atrium. A valve then pushes it into the Right Ventricle. From there it goes out for a trip to the lungs and returns oxygenated to the Left Atrium. That then pushes through the Left Ventricle when it's pumped to the rest of the body to provide oxygenated blood to all your tissue. When you have a VSD though, there is a hole between the right ventricle and left ventricle. Blood that is supposed to go out to the body decides to cut across and take another trip to the lungs. Because of the extra pathway, the pressure in the left ventricle can't build up as high and push blood out as well. Also because of the higher pressure, the right ventricle will start to enlarge,  

At the Cardiologist's office, we took more measurements and discussed our options. 
Cardiologist - It's a very large VSD. We'll probably need to do open heart surgery before Christmas (4 weeks away).  
Theresa and I were scared. This little guy who we have only just started to know would have open heart surgery? That's serious business! We don't want to lose him. 
Ian was put on medications to help with the symptoms, but you could tell he was tired. 
The medical term I believe is "Failure to Thrive". Feedings were difficult. He wasn't ever hungry. We'd try to push food into him, knowing he needs some bulk to him if he ever gets sick or if there's complications with the surgery. 

As December got closer, we had more appointments with the cardiologist. A bit of good news! Ian's large VSD is getting smaller. It's not gone by any means, but the need for immediate action has passed. Take him home, keep doing what you're doing, and we'll see him again in 6 months. There's a chance that the hole between the two chambers will close on its own, but time will tell. 
And so, that's what we did - took him home, kept him active and tried to keep him healthy. Since his heart and body was working harder than normal, getting sick could have been really bad for him. Normally we'd be traveling and going lots of places, but everything got pulled back in once Ian's health was on the line. If you were sick, you didn't get to visit. If we were sick, we kept our distance and wore a mask. It was a rough time for a while. 

During his 6 month cardiologist checkup, he got an echocardiogram and we learned that the VSD hadn't closed. There was still a murmur in his heart, but he was still growing and thriving so we could continue to wait. 
One thing we were going to need to keep an eye on though was the relative size of the left side and the right side of his heart. The right side was starting to get enlarged, but as he grew things might just start to even themselves out. So, does Ian have a big heart? Yes, it's getting bigger, but we'll keep an eye on things. 

In the meantime though, life goes on. With the immediate worries out of the way, we're back to going on with our normal ways of life. Traveling. Seeing family. Going swimming. 

He's still not the best little eater, but look at him go after a popsicle. 
Once we found that he would eat steak, we gave him steak meal after meal in an effort to get those calories in him. I think we've ruined him though. To this day, he detests steak. 

He's getting bigger and we still would visit the cardiologist every six months. I was hopeful that every visit we'd do the echocardiogram then the doctor would come in and say "Good News Everyone!" Alas, that didn't happen. He wasn't getting worse, but he wasn't getting better either. We're just in a holding pattern. 

Along with having a VSD, Ian also has a small PDA. Alright, what's a PDA?
A Patent Ductus Arteriousus is a blood vessel that flows from the aorta to the pulmonary artery before birth. Afterwards, it typical closes off by itself, but not always. It's allows blood to bypass the normal route and causes heart enlargement, so it's not doing Ian any favors. Luckily it's an outpatient surgery that can be completed via a catheter and a plug. 
Our cardiologist partners with CHOC in Orange County California (near Disneyland). So, 18 month old Ian did a quick visit to the hospital to get it taken care of. 

A little scary for us because, you know, surgery, but Ian did great. 

The very next day, we were outside in the front yard eating popsicles. He's doing great. 

Looking good buddy! You're awesome!

Ian kept growing and life continued. Welcome to the family baby Alli! 

He loves playing in water and eating popsicles. 

And of course loving on his little sister Alli. They have so much fun together. 

Visiting Disney World to get his very first haircut at 3.5 years old. 

We love to visit Costco for the samples. This is when he's trying fish sticks. 
Ian - I like the stick, but not the fish. 

During this time though, Ian is staying on the lower end of the growth chart, which isn't great. His latest cardiology appointments were also showing that his heart is still becoming enlarged, and if we don't do something about it, it will start leading to problems. And so, Theresa and I had to make a scary decision. When and where will we schedule Ian's open heart surgery. 

The When was June 2nd, a Friday. Family from both sides flew out to be with him for it. 
One way we can help out is to do a directed donation of blood. Pop Pop happens to be a perfect blood type match and so on Tuesday he went and donated whole blood for Ian to have during/after surgery.

And Gram and I are matching donors for blood platelets, a very necessary item for recovery, helping blood to clot. 

Ian is also coming along to check out the hospital and do some blood work before the big day.

So where did we decide to have Ian's Open Heart surgery done? Theresa and I had researched where to go for a while. Many of the best hospitals publish their success rates (along with their mortality rates) for their different open heart surgery cases. We looked at hospitals in New York, Texas, and more, fully prepared to stop everything else going on in our lives, take a break from work, and moving to a different city for a month to have the surgery, recovery and follow-ups. 
Luckily for us though, Los Angeles has one of the best heart hospitals in the nation for kids. Childrens Hospital Los Angeles. In the months prior, we'd looked at the data, done our research, picked a CHLA surgeon, interviewed her, and then picked a date. 

Ian makes people smile. He's such a good patient. Even when he knows something is going to hurt, he's amazingly brave and grins and bears it. 

Both going home with tape on our arms from having had blood taken. 

Well, we thought we were all ready for surgery, but on Thursday we received a call that we were going to be pushed back. An emergency case came in and since Ian isn't in a critical state, his surgery will be postponed. It was a little frustrating getting bumped, but I understand. There's another family going through similar anxiety who is so relieved that they'll be able to get the help they need sooner. 
So with a weekend in front of us, and the whole family here, we went out to do some of Ian's favorite things. Like drinking slurpees and playing in the sand on the beach. 

Painting in the driveway. 

And getting frozen yogurt. Yum!

Light on the yogurt, heavy on the tasty toppings. 

Monday, a day that we've been anxious for, has finally arrived. Today it's time for Ian's surgery. 
We said goodbye to Alli and Gram. They'll be hanging out at the house while we head north to the Children's Hospital. 

This whole time Ian has been a rockstar. He's not nervous. He's not scared. He's 3.5 years old and can tackle anything. 

Doesn't he look awesome in those tiger surgical clothes. 

The whole family got to hang out with him in the surgical waiting room. CHLA had lots of toys, books, and stickers. Ian made sure to give everyone who was here for him a sticker. 

How long would we be in here? We weren't really sure, but we all loved being together. 
Over the weekend, Ian wrote his first book with the help of Gram. He's the author and the illustrator of The Diamond Ring book. He was so proud of himself, and loved having people read it to him. 

Mommy found a Paw Patrol book, a favorite show at the time. 

And look what Aunt Rita has for him. Rocky from Paw Patrol!

Thanks Aunt Rita. 

As the minutes dragged on, and the waiting continued, Ian found some coloring pages. Look, it's Rocky! 

He wanted Uncle Don to read him another story. Our friends from Arizona, Kelly, Sean, Sophia, and Penny sent him a plush Flower to help him through his surgery. 

Finally after 90 minutes, it was time to say our goodbyes to the extended family and head back to surgical prep. 

They gave Ian some medicine to help him feel comfortable and we got everything ready. 

We told him that he was going to do great. That we loved him so much. That we'd see him when the surgery was done. 

And then, they wheeled him away, though the surgical doors and out of our sight. 
Up to this point, we've told everyone that in front of Ian, everything about going to get this done is going to be positive and uplifting. We're not saying how scared or afraid we are in front of him. Everyone up to this point has done a great job putting on a brave face. 
But I'm not going to lie. As soon as they took him away from us and out of our sight, I cried. My son. My only son. He's about to go through something difficult and I can't control it. I was scared. I was afraid. What if the worst happens. 

All the family that came is outside near the food court, set up around a table. Of course Chi has brought snacks. We waited. And waited. They told us ahead of time that the surgery would take 3-4 hours. It was hard to concentrate while we sat there. Then Theresa's phone rang. 
Surgeon - Ian is out of surgery. He did great. You can come up to see him now. 
I couldn't help it. The tears were back again, but this time they were tears of joy. It was an immense relief to get that phone call. 

Up in his room, Ian is still out. But we get to see him, we get to touch him. 

To hold his hand. 
I remembered back to when he was born and it was just after I cut his umbilical cord. He was being all cleaned up and under a heat lamp. I asked if I could touch him and the doctor told me "He's your son." So much responsibility is implied in those words. I was so happy to get to touch him again, knowing he's my son, and hoping we'd made the right decision for him. 

Taking a look at his bandages where he was opened up. 

Ah, I see a bag of whole blood, helping in his recovery. Thank you Pop Pop. 

And a bag of platelets as well. Thank you Gram and Daddy. 

As he's slowly waking up, more and more family were allowed to come up and see him. 

I remember those first hours after surgery he was only allowed to have ice chips, and he was so very thirsty. 
Ian - Mama, please may I have water. Please may I have water. Please Mama. 
It was heartbreaking to have to deny him. He's done so good through all this. 

Visitors had to be out by a certain time, but we were allowed to have two people in the room with him at all times. Not wanting to leave him alone now, even for a minute, Theresa stayed in the room the entire time. The rest of the time, myself and Aunt Rita took turns by his bedside. 

Singing songs together before bed was something we'd do every night. I remember sitting beside his bed that night singing every song I could think of, for hours and hours, whether he was awake or not. When he woke up, he was still in a little bit of a fog, but would still sing along with me. 

After my shift was over, Mommy came over for a few hours. 

Our Highlander was parked in the hospital parking garage. We'd prepped the day before with pillows and blankets so that whoever wasn't in the room could go downstairs and get a few hours of sleep. 

The next morning came and Ian was awake. And smiling? Being a Children's Hospital, CHLA had gone to great lengths to make sure that the kids here were comfortable and happy. Cassey is a volunteer dog that comes around to make kids smile. Ian got to give her treats and pet her soft fur. 

Gram is here! It was her first time seeing Ian since the surgery. Thank you for taking care of Alli while we've been here. 

Less than 24 hours after the surgery and he's standing up and taking small steps. 

It's also time to start introducing foods again. Yum, he certainly loves popsicles. 

Just had open heart surgery. No big deal. 

Oh yeah, here we go. A pepperoni pizza just for him. And chocolate milk too. The kids both love being at the hospital because they can pick whatever they want off the menu. 

Pepperonis! Yum!

Sitting in bed can be a little boring. Luckily they have a bin of Legos and we can use our dining plate to build on. 

Ian - I want to play Legos with Pop Pop. 
I think we can make that happen. Even though Ian's still got tubes and wires going all over him, we were able to get him out of bed and onto Pop Pop's lap. Ha, Pop Pop is finishing the core of the apple Ian got for dinner. 

So happy. 

The hardest part was over, but there were still a few more unpleasant parts to go. Ian had a long tube in his neck, plus a few drainage tubes in his abdomen that needed to come out. 

I know it's tough buddy, but I'm so proud of you for getting through it. 
Time for an after surgery bath. 

Ian - Where are my toys? 
Ah, no bath toys with a surgery bath. 

Ian - Pop Pop, no eating hamburgers in here. 

Ah, that's what he's talking about. Good thing we didn't order any hamburgers. 

With all the tubes removed, Ian can finally get comfortable and settle in for another night's sleep. He sleeps on his belly, and despite the stitches going down his front, he's comfortable and ready to sleep. 

My shift, again we sang songs together and watched the monitors. 
There was one particular monitor, the blood oxygenation clip, that would stop reading. It would start beeping and the screen would flash a question mark. One of the YouTube channels Ian likes plays a song called Mystery Box, and Ian would sing it when it happened

Breakfast the next morning. Oh my. All this food just for him? 

Today is a day for getting up and getting moving. We played with Lego in our room. We also walked over to the common room where other kids were playing with toys. There were no visits from any more puppies, like Ian was hoping, but a group did come around and give Ian a brand new book of his very own. 

Sitting with Aunt Rita who has been here since Monday. 

Getting an echocardiogram of his repaired heart. To fix it, they trimmed a piece of his pericardium (the sac that surrounds the heart), and used it to "patch" the hole in between the ventricles of his heart. 

Scars tell a story. Ian is going to have an awesome scar and a good story to tell when he's older. 

Never a dull moment in the recovery room. Playing with Playdoh with Pop Pop. 

And having chicken nuggets, french fries, and broccoli for lunch? Man, they are feeding you really well here! But why is he out of his hospital clothes and back in his regular ones? 

Because it's time to go home! I could hardly believe it either. 
Less than 48 hours after his open heart surgery and we were all clear to go home? Are you sure? 

Once we got home, Aunt Rita had the whole rest of the Paw Patrol crew waiting for him. 

Alli wants to see. But does she want to see Ian, or some of those Paw Patrol pups? 

To celebrate a successful surgery and getting to come home early, we made chocolate covered strawberries together. 

Ian is still recovering, and supposed to take it easy, but he's still delivering strawberries to everyone in the living room. 

It's good to be home and to have all that behind us. We were so thankful for all the family that came out to be with him and support us through all this. 

Four days after his surgery and he's back to being a normal kid. He's supposed to take it easy, but the doctors also want him up and moving around. 

And so we went on family walks together. 

And went to the farmer's market together. 
Ian, is that an apple you're eating? 
Ian - It's a tomato! 

Sigh. It was such a relief to be out and about like normal again. From the worry and anxiety a week ago, to having all that past us with a good outcome and ready to tackle the next chapter of life. 

Later that day we'd take Gram and Pop Pop to the airport. 
Goodbye Gram. Thanks for coming. Love you. 

And back home, it was back to doing what 3 year olds do. Collecting leaves, riding tricycles, and playing with his sister. We are going to have a hard time having him "take it easy". 

Who would have thought that 4 days ago, he was lying on a hospital bed having just had open heart surgery. 

Alli is only 1.5 years old, so she doesn't understand a whole lot right now. Theresa told her that Ian had surgery, and we've got to take care of him. She wanted to help out too, so she got his juice for him and helped him drink it. 

Back to eating popsicles on the porch. 

Now, as I write this up, just about 6 years after it's happened, all the emotions of those times comes flooding back. Remembering the worry, the anxiety, and finally the relief, along with all the love and support, still brings tears to my eyes. It was a tough time for the Flowers family, but we've come through it all together. 

Today, Ian is a happy and healthy 9 year old with big dreams. Further cardiologist visits after the surgery have shown it to be a success, with a very tiny VSD remaining. This one is small and not contributing to any enlargement that we know of. As he grows, his heart will also grow, and there's a chance that it will heal over completely. But even if it doesn't, Ian has no restrictions from a medical perspective. Go outside. Go crazy. Be active. And have fun! Ian's an awesome boy who still has a beautiful heart. He's come through a lot already and he's destined to do great things. 

1 comment:

  1. Wow...what a journey and story to share...thanks for sharing such an emotional time in the Flowers' life. Having the supporting family around was a tremendous source of comfort and encouragement...everyone kept up such a positive and brave front before Ian was wheeled into surgery, when deep down there was all that anxiety and fear (I was feeling it, too, as I followed along in this written journey...yes, my eyes were watering, and feeling fearful and wondering what would happen even though I knew Ian was a healthy 9yr old today!) Cannot imagine the depths of relief when that call from the surgeon came through after surgery...what joy and a HUGE load off everyone's shoulders!!! Seeing how active and healthy Ian is today one would never have known what he went through at just 3.5 yrs old. Ian, you were a real trooper and did GREAT!...continue to bring your energy and love to everyone around you...your "big" heart touches people around you everyday! EOM