The Long Wait (the recovery process)

After a long, exhausting day of waiting for Nolan’s surgery to be done, we were ready to begin to road to recovery.  As I’m sure you know, all heart kids are different, so recovery times can vary…but we were hoping for something like 2 weeks, 3 tops.  They managed to extubate Nolan late that same night and then they continued to work on stabilizing his blood pressure and managing his pain.  You could tell he was in some discomfort because his brow would furrow from time to time.

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Eventually he settled down a little and even asked for some water and agreed to watch an ABC video (he is obsessed with he alphabet).  It seemed like he was showing some definite signs of himself.

Still, he did just go through a major surgery, so he was pretty agitated and restless.  He would try to toss and turn, I’m sure it was an effort to be more comfortable since he likes to sleep on his side.  He even almost rolled completely over at one point, it was like trying to hold down an angry eel.  But we settled him down.  His belly was distended so we held off on feeds for the time being and we just let his awesome medical team work their magic.  According to the physicians over the next several days, the Fontan looked like it was working properly and the fenestration was doing what it should.  If anything they wanted to keep an eye on some narrowing in his pulmonary artery, which they already ballooned once during his cath earlier this year.

Nolan continued to be restless and fussy and it was really difficult to keep him calm.  He was draining quite a bit from his chest tubes, which is good, and the plan was to get his belly to calm down and to get him up and moving to help with the drainage.  Eventually we got one chest tube out while the other continued to drain.  Every day they came to do an x-ray to see how his chest was doing and eventually they had to put in another chest tube.  I wasn’t thrilled about that, since those are obviously uncomfortable for him, but if it’s one step closer to home it needed to be done.

The biggest concern was around Father’s Day, where I noticed considerable weakness in Nolan’s arms.  In fact, he didn’t really move them.  I brought this up to his medical team, and the next day, and the next day, before someone finally looked into it.  That was extremely frustrating because, you know, you want to be heard as a parent.  But with his nurse’s help, we were able to advocate for a closer look.  They some neuro checkups and a couple EEGs to rule out any neurological problems, and determined that some big-time therapy would get that function back.

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Eventually we got Nolan’s agitation under control and got him moved from the CVICU to the Progressive Unit.  While up there he was able to get out of the bed and ride around in the wagon and even got some visits from the therapy dogs.  We began some in-room therapy with him and he was happy to realize that those two little legs still worked great and were getting stronger.  We got feeds re-started on him and eventually both chest tubes came out and those daily x-rays looked clearer and clearer.

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Now normally we would be discharged from the Progressive Unit and head home, but since Nolan was still very weak, we had to be transferred to the Rehab Unit.  This would be a whole new experience for us…

Super Nolan Touches Down at LCH (surgery day)

Early in the morning of June 16th, we woke up Nolan to make the 35-minute drive to Levine Children’s Hospital for his third open-heart surgery, the Fontan Procedure.  I think it took everything within me to get out of bed and just get through the process of loading into the van.  We dressed Nolan in his Super Nolan cape (courtesy of Heart Heroes – THANK YOU!) and mask and he felt super special.  Because, well, he is!

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As you can imagine I was a rollercoaster of emotion: basically I kept going back and forth between scared to death and completely confident and calm.  I wasn’t as terrified as I was before his Norwood, and I wasn’t as calm as I was before his Glenn.  It was somewhere in the middle.  I’m sure it had something to do with the length of time between surgeries.  Anyways, we made it to the hospital just fine: we parked and took Super Nolan inside and he walked around like he owned the joint.  He definitely loves some attention.

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The team checked us in, validated our parking, and escorted us to the pre-op area, where we would go through the familiar – but not comfortable – process of speaking with the surgical team, the anesthesia team, and nursing team.  We watched TV with Nolan, gave him lots of hugs, and walked around with him looking at all the room numbers.  I really, really didn’t want to let him go…and that became stronger as each second ticked by on the clock.  Finally, Nolan got his loopy meds and the team came to take him back.  They went one way and we went the other way, and I felt a total wreck…probably the biggest mess I’ve been in a long, long time.  Now it was just time to wait in the waiting room…and wait, and wait, and wait.  We knew that a long wait didn’t necessarily mean the surgery was going poorly, but mostly likely meant he had a lot of scar tissue to work through.  Regardless, we received regular updates and I just did my best to occupy the time.

Finally we got the call we had been waiting for: Nolan’s surgery was done and successful.  After a lengthy wait, we got up to see him – it’s hard to see him intubated and on all those med pumps again:

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But I was so happy to see some good sat numbers and just to hold his little hand and tell him we were there for him.  Next step?  Get outta here.

I’m Baaaaaack

Hi Friends! Guess who’s back! I’m sure some of you were wondering when on earth I’d be updating the blog. I wanted to let you know that Nolan had his Fontan procedure and after 33 days we got to go home in mid-July. I decided to use that time for all of us to get back into the swing of things. Now that school has started back up and life is chugging along again, I’ve decided to fire up the blog again and let you know how Nolan’s surgery went. Over the next several posts I’ll be telling the story of Nolan’s Fontan procedure and recovery, so stay tuned!
Before I do that, though, I really wanted to thank all my readers for visiting Nolan’s facebook page and leaving kind comments and sending supportive messages there and on this blog. It really meant a lot to have your support behind us, it really made a difference! “Thank you” doesn’t seem like enough, and if I could thank you all in person, I so would. I’m grateful to be part of this supportive community.

  

It’s Go Time

Well everyone, it’s finally Fontan time. Earlier today we took Nolan for his scheduled pre-op appointment. We dressed him in his own green surgical scrubs and doctor kit and he was looking majorly adorable:

  
As you can imagine, Nolan doesn’t do the best with doctor’s appointments anymore. I mean he’s super happy to go to the office and super happy to see everyone, but the minute they slap a blood pressure cuff on him, he is DONE. And an EKG? Forget it. So we tried to talk up the appointment as much as possible: I had him squeeze my arm like a bp cuff, packed stickers that he can put on me while getting his EKG stickers put on. Even our oldest son came along to help and be a good big brother. 

The staff at Levine Children’s Hospital- as always – was awesome. They decided not to do the EKG until surgery day when he got his versed and was calm. So they let him play, did a nose swab for MRSA, and had us sign a bunch of papers. I went with him for his chest x-Ray and he did awesome. He didn’t fuss and thought it was fun. Then came time for the biggie: blood work. We sang the ABCs over and over again and the phlebotomist got it on the first shot! And Nolan didn’t cry or fuss once! That lady was a total boss!

So tomorrow, June 16th we’ll get to the hospital at 7am for Nolan’s scheduled Fontan procedure. We’re as ready as we’ll ever be. We appreciate all the thoughts and prayers: thanks so much to all of you for your emails and comments. They’re always much loved!

If you want to keep up on Nolan’s updates over the next several days, please like and follow his Facebook page: http://www.facebook.com/SupportTeamNolan

Now Wait Just a Minute…

So as you know from reading this blog, Nolan was scheduled for his Fontan Procedure on Monday, June 6th. Weeeell…so much for that. Turns out Nolan had a small (thank God) bout of the poops which gave him a bit of diaper rash. And that, my friends, led to the next installment of “let’s postpone the Fontan.”  When I got the official cancellation, at first I was like:

  
And then I was like:

  
And then finally I was like:

  
Sigh. 

So it goes. It’s alright though: the nursing team said that even a diaper rash can cause dangerous issues if they need to put a line anywhere near his groin area. They said it’s a risk they never take. And I can definitely appreciate that. 

The hard part is the lead-up to the surgery and all the preparation, only to hit the brakes. Now we have a little time: Nolan’s new surgery date – God willing – is Thursday, June 16th.  Until then we can hope he stays healthy!

What is the Fontan Procedure?

So as you know by now, Nolan is scheduled for his next heart surgery – called the Fontan Procedure – on Monday, June 6th. So what is the Fontan Procedure? Before we get into the specifics let’s step back a little bit and have a little review on the difference between a healthy heart and an HLHS heart:  
So now let’s talk a bit about Nolan’s second heart surgery, which was called the Glenn Procedure. In this surgery the superior vena cava – the vein that routes blood from the upper part of the body – is connected to the pulmonary artery. This helps with blood flow to the lungs. So currently as of writing this entry, his heart looks something like this:  

 This next – and hopefully final – surgery is going to look like a reverse (or flipped) version of the previous surgery. In the Fontan Procedure, the vein that routes blood from the lower part of the body is connected to the pulmonary artery. The vein won’t quite reach, so a conduit will be used to make the connections. At times, surgeons will add a fenestration to the Fontan, which I’ve seen sometimes called a “blowhole”. It will allow a pop-off if pressures get a little high. In Nolan’s case, adding a fenestration will be a decision made by the surgeon at the time of surgery. Once the surgery is complete, his heart will look like this:

   

The lungs will now have a passive system of blood flow, which will move on its own and Nolan’s single ventricle can work on pumping blood to the body. Why is this important? Basically he has half a heart doing double the work. As you can imagine, this is a lot of pressure on a tiny heart and the Glenn and Fontan Procedures will alleviate some of the work on his heart, which will allow him to grow and remain active. 

As far as complications go, there’s your usual: infection, bleeding, etc. This are par for the course. Nolan will have 3 chest tubes in, but hopefully he will drain well and can get those out as quickly as possible because from what I understand they’re quite uncomfortable. Recovery for the Fontan Procedure – if all goes well – is about a week. But: there is something that will delay that recovery, and that’s our good friend pleural effusions, which basically means fluid build-up around the lungs. This can be peed off or drain via the chest tubes. If the fluid exists, we just have to wait it out until it’s gone. If you can recall, Nolan’s Glenn recovery was only 5 days, but he still had fluid buildup so he was back in the hospital for a whole…seven…days. So this time around we’re gonna keep a close eye on it!

Of course, with any surgery, this is a very serious procedure. We’re putting his life in the hands of an amazing team at Levine Children’s Hospital and we’re confident they’re going to do an awesome job! As always, we appreciate the prayers and kind thoughts!

This is Real, This is Happening

We knew the Fontan was coming. We knew it was coming from day one but it seemed so far, far away. A successful Glenn Procedure gave us some room to breathe, to create memories, to move on a little bit. But here we are…Nolan’s Fontan Procedure was originally scheduled for late March, but since they had to do some ballooning during his cath, that date was postponed. Since Nolan didn’t need to have the surgery immediately, we chose to wait until school was out for all the kiddos. On May 5th we sat down with his surgeon, Dr. Maxey, to finally talk about the Fontan.

But before we get into the meeting, a little background. When we started this journey with Nolan, we were introduced to his surgical team: Dr. Maxey and Dr. Peeler, who was the Chief Pediatric Heart Surgeon. Last year Dr. Peeler announced he was leaving his position for a similar one at another hospital. Of course, this was a shock to everyone. Eventually, though, Levine Children’s Hospital hired Dr. Paul Kirshbom from Yale. Really awesome guy: I was lucky to meet him a few weeks ago. I know he’s going to take this program to great places. Some parents, understandably, were very nervous about Dr. Peeler leaving. What about us?

Dr. Peeler did a fantastic job on Nolan’s Norwood Procedure (with Dr. Maxey), but if you recall from this blog you’ll know that Dr. Peeler wasn’t available to do Nolan’s Glenn Procedure and it was done by Dr. Maxey, so we had some experience with Dr. Maxey getting the job done in awesome fashion. So for me, having Dr. Maxey do Nolan’s Fontan Procedure didn’t make me so nervous. I mean, I’m still nervous…but you get my drift.

So anyway, here we were sitting down with Dr. Maxey talking about our little man. He walked through what the surgery would entail (I’ll post details about it soon), and laid out all the facts for us. He said Nolan is a great candidate for his Fontan and he feels very confident about it. So if he’s confident, then I need to be confident: in him, his team, the nurses, the CNAs, the housekeepers, the food service people, etc. It’s a total package. If they’ve got my son’s back, then I’ve got theirs. Before we left we had Nolan scheduled for his Fontan Procedure on Monday, June 6th.

Don’t get me wrong, though, this is still stressful, heavy stuff. For some reason, I feel much better about a June surgery date than the late March one. I can’t explain why, but that date was totally freaking me out. Many of you read this blog because it is helping you along the journey: I’ve been happy to share our experiences with Nolan through his Norwood and Glenn. But this is new territory: this is an unknown and honestly I’m not sure if we’re ready for it. There’s no way. We’ll be bringing our son – now a toddler – in for another surgery. There will be fear, pain, and tears. And I wish, as I do very often, that he didn’t have to go through this. Or that he would wake up tomorrow with a whole heart. Sigh.

But this is real, and this is happening…and dates on the calendar keep moving along, and there’s nothing I can do to stop it. In the meantime we hope, we pray, we laugh, we have fun, we continue to make memories. I sing the ABCs with Nolan (sometimes non-stop), I tickle his neck, I encourage him to dance to fun music, and I keep telling him how awesome he is and how much I love him. As June 6th rapidly approaches, we would appreciate everyone’s prayers and kind thoughts! Thanks for being awesome, readers, because of you I know we have friends around the world and we can do this with your help!

Making Choices

When we found out Nolan was going to be born with HLHS, our world seemed like it was spinning out of control – and I’m sure you can relate. There comes a point where you sit down and think hard about how to get the best care for your little one and give them the best shot at life. Where are the best hospitals? Who has the best surgeon? Who has the highest survival rates? I see these questions asked all the time in social media, and it’s a legitimate question for a lot of people. For us, we were fortunate to have Levine Children’s Hospital in our back yard and from what I heard, they did a really good job. Prior to that, though, I knew this place existed, but didn’t know much else about it. 
But here’s the facts, friends…you and I, we can go almost anywhere for care. Hop on a plane and fly to Boston or Philadelphia or make the drive down to Atlanta. But nearly 4 years after stepping foot in that hospital for the first time, I want to let Levine Children’s Hospital know that I will always choose them.

Why?

I choose you, LCH, because of your nurses. The men and women who fought to ensure Nolan recovered from his Norwood procedure, no matter how many weeks it took. The same ones who patiently answered the same questions over and over and over again. The same ones who took the time to ask how our other kids were doing. The same one who made my oldest son a card from Nolan when I mentioned he hadn’t had a chance to meet him yet. Nurses, you’re the ones who have guided us through this crazy process, you showed us where to find that chocolate milk in the nourishment room (yum) and you quietly shut off the lights in Nolan’s room when I fell asleep in my chair from exhaustion. I choose you because you don’t just do your jobs by the book: you do them with compassion and human connection. To you it’s not just enough for Nolan to survive, but he also needs to thrive.

I choose you, LCH, because your hospital is a wonderful place to be – even if that’s not where you want to be. The bright colors, the bacon chairs, the radio station in the lobby, the smiling faces: those are the things that I will never forget. Not to mention you strive year after year to be the very best around: you recruit amazing people who do life-saving work each and every day. I choose you because of your Child Life team, who brought Nolan a mobile to look at once he was able to open his eyes. Or the volunteers to came by with a cart of toiletries when I forgot my deodorant at home and didn’t want to smell like a 3-day old bowl of chicken noodle soup.

Even though you’re close to home, I choose you – Levine Children’s Hospital – because every time I walk through those sliding doors at the front of your hospital, we are treated like family. And when it comes down to my son’s care, I choose family.

So to the nurses at Levine Children’s Hospital, I want to wish you a very Happy Nurse’s Week! And to everyone else, have a Happy National Hospital Week as well! I know that every time I see Nolan smile, breathe, jump, laugh, and play, it’s because of you and the tremendous, sacred, life-giving work you do each and every day, without fail. From the bottom of my heart, I thank you!

  

For the Heart Mommas

Hey Heart Moms!  I’m going to make this post brief, just in case you’re reading this from your phone while you’re hiding from your kids in the bathroom.

I kid, I kid.

Seriously, though, I wanted to take a moment on this blog to wish a very happy Mother’s Day to all the Heart Moms out there! You were handed a life you could have never planned for, not in a million years.  While other moms-to-be were having elaborate gender-reveal parties, you’d lay awake at night trying to get that ultrasound image out of your head.  While other new moms were figuring out how to install a snap-and-go car seat, you were doing your first 2-minute hand wash prior to your first NICU visit.  While new moms came home to a beautifully done baby nursery, you did your best to make a Ronald McDonald House feel like home.

Yet you’re still here…still fighting.  With every step down the CVICU hallway, hearing the familiar beeps and dings, you’d get stronger and stronger.  Now you’ve got purpose, something to fight for…someone to fight for.  You’ve learned to surf when the waves come.  You’ve helped keep the germs at bay and taught a growing girl or boy that a big scar down their chest doesn’t make them super strange, it makes them a super hero.  You carried our heart kids all while bearing the weight of the stress and the fear…the way I see it, you passed on your toughness to them.

Thank you for everything you do.  There will be days when you’re knocked down…don’t ever stop getting back up again.  There isn’t much else in this world tougher than a Heart Mom!  So look back on all those things you’ve been through and give yourself a little bit of grace and tell yourself that you did good.  Rest in that for a little while.  Don’t let anyone tell you how you should do you.  Maybe there’s other moms out there who looked like they just walked out of Pinterest, but can they say “pleural effusions” five times fast?  I rest my case.  

I hope all the moms out there have an amazing Mother’s Day!

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And last, but certainly not least I wanted to give a very special shout-out to my wife Rebekah.  You are an amazing mom!  I remember before we had any kids we jokingly asked each other “Who in the world has three kids?!”  And now look!  You juggle so much and do it all with grace and kindness: the very same kindness that you instill in our kids every day.  They’re going to grow up to be amazing young men because they had you as a mom.  Love you❤

Risk: More Than That Board Game You Never Played

Aside from this blog, I really enjoy sharing my story with others. Over the last couple years I’ve been able to speak to other heart parents and healthcare workers about my journey with Nolan. I love helping people know they’re not alone or open others’ eyes to congenital heart defects. Recently I had a chance to take my story a little more “mainstream”. There’s an amazing program for creatives here in Charlotte called CreativeMornings/Charlotte. They set up free monthly speaking engagements where they bring in speakers to inspire others with their stories. It’s really awesome stuff. A couple weeks ago, CreativeMornings/Charlotte was holding an event during a local weekend art showcase called BOOM Charlotte. For this “Audience Takes the Stage” event, 6 people were chosen to speak for about 7 minutes on the subject of risk. I was really excited to be chosen as one of those people! So in the morning we gathered in the Plaza-Midwood neighborhood here in Charlotte and we all told our stories to an audience who mostly never met us before:

It was a really great time! I got to hear stories of hope, dedication, and perseverance…all tied to risk. I enjoyed my time up there on stage…but 7 minutes FLIES by! I talked about how my journey with Nolan inspired me to write this blog, because discovering your child has a CHD is like stepping into the unknown, and I wanted to help others as they make that same journey. That’s a lot to pack into 7 minutes. So now that I have no time limit, I want to share with you some of the things I spoke about and how they can apply to you as a heart parent.  You see, it’s not easy to share your story…but if we can do so, we should.  The reward is greater than the risk and you can change the course of your life, the lives of others, and even the future of CHD research.  So check it out:

The Risk of Being Vulnerable
This was one of the big risks when it came to writing this blog. There wasn’t a lot out there at the time for heart dads by heart dads. But the bigger thing was not just telling a story, it was being open and honest about it. Talking about the times I was scared, upset, frustrated…even talking about tearful moments. Last time I checked, most guys aren’t signing up to talk about that kind of stuff. So I choose to open up as best I can about it and it’s not easy…many times I’d prefer to tell highlights of the story. Being vulnerable is a big risk because there’s a chance – believe it or not – that you reading this might think that I don’t have things together at all. And – spoiler alert – I don’t have it all together. No one’s perfect and life is a process! When you choose to share your heart journey with others, you’re also making yourself vulnerable…but if you take the risk, it will pay off!
The Risk of Facing the Past
Being a heart parent is like climbing a very steep mountain. You work very hard just to move forward and hopefully leave all that old mess behind. When you choose to share your story with others, whether personally or through something like advocacy, it causes you to turn around and face those things you’ve put behind you. The surgeries, the recovery, the hospital smells and sounds. All of it. And if you’ve done it, you know that sometimes it really hurts…like re-opening an old wound. Sometimes we don’t want to talk about it, and I understand that feeling. But when you choose to do that, I gotta tell you: not only do you help others, but you start to heal yourself in the process.
Why the Risk is Worth It
I know that life sometimes feels like an ocean bashing you up against the rocks, but one day you’ll climb up out of the water and onto those same rocks. And you can choose to walk away or withdraw or you can choose to be a lighthouse for others. I hope you choose to use your story to be a light. Tell your story. Whether you help one or help a hundred, it’s always worth it in the end. Is it easy? Not at all. But you can be a fire and every fire starts with a match and every match is lit by friction. So how do you get involved?

· Write a blog!

· Advocate for CHD research! Visit PCHA to learn more.

· Get involved with local groups such as Camp LUCK (if you’re in Charlotte area), Mended Little Hearts, or Sisters by Heart.

· Join the tons of CHD facebook groups and talk with others. They need you!

Sharing your story is like stepping into the great unknown…it can be scary sometimes…but remember when you started this journey? You were stepping into the unknown, too, and now you can guide others who are now in the same place.

To learn more about CreativeMornings/Charlotte, visit Charlotte is Creative