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I wake up pretty early for work – just after 5am, usually – and let’s face it, it stinks. No one likes getting up while it’s still dark out and leaving for work while it’s still dark out. For me, however, I got a little bit of perspective over the last few months while leaving for work and – if you’ve read this blog at all – you know that perspective in this journey is an important, and helpful, thing. You see, I used to just wake up, shower, get dressed, let the dog out, give Nolan his morning meds, pack my lunch, make coffee, and then head out to the car and off to work. Boom. Same thing every morning.
The last few months, though, I’ve come to give a little bit of appreciation to leaving for work while it’s still dark due to one thing: the view. While leaving for work one day I just happened to look up and – WOW – it was like the sky was darker than usual and the stars were brighter. And it was incredibly beautiful. So then it became a morning thing: go out the front door, lock it, then look up. The moon would shine, you can pick out a constellation or two, maybe a planet like Venus nice and bright in the morning sky. And call me a nerd if you want, but it’s almost breathtaking.
You see, where I grew up there was a lot of light everywhere, so seeing the stars wasn’t really much of a thing. You can see some, but it also wasn’t the kinda neighborhood where you hung around outside looking up at the sky. Over time, you take that kind of thing for granted. Yeah, there’s stars and a moon, they’re up there all the time, big deal. I live in the ‘burbs now and while there’s still quite a bit of light, I can see the stars much better now than when I was younger, and now I find myself in awe. How they can be so far away and still seem right there, how we”ll see more of the moon’s surface in our life than our own planet’s (when you think about it). I think about how people navigated using the stars long, long ago, and how amazing it is that – as far as we know – we’re the only living beings out there. Crazy, right?
For Christmas, the kids got a telescope as a family gift and I think I was the most excited to use it. I’ve looked at the moon with it several times (most recently the blood moon eclipse, which was amazing), but the first time we set it up and I finally got the moon in view, it was really breathtaking. Even the kids were amazed, and they don’t seem amazed by anything sometimes. The stars, the moon, space…it just leaves me with this amazing sense of wonder. What else is out there? What will we find out in my lifetime? What’s it like to be in space?
There’s something about that sense of wonder that I find – I dunno – grounding, in a way. When I look up in the morning sky and see those stars as I’m walking to my car, there’s that feeling of being so small in this great huge universe. And that’s actually ok with me, it doesn’t bother or intimidate me at all. It tells me there’s so much more to know and to learn. And that I’m lucky to be alive, on Earth, to see what discoveries happen next. That’s amazing!
Then I get to thinking about being a Heart Dad and I realize that this life is often full of wonder, too, if you stop and think about it. The other day I was giving Nolan his evening meds: he’s sound asleep by this point and I was just kind of watching him sleep and breathe slowly (you parents know all about the “you still alive?” nighttime check). And then it hit me, even though I already knew it – this kid has half a heart. HALF. That’s wild…and it, like, still pretty much functions. Yes, the plumbing is different right now and it’s nowhere near perfect, but whoa. That’s pretty amazing. What does it feel like to have half a heart? I don’t know. I don’t think Nolan can describe it to me at this point, and either way he doesn’t really have much of a reference point for what a “normal” heart feels like. When Nolan gets to running around and playing, or when he’s at the trampoline park jumping around and climbing, you can sometimes forget about his HLHS. And yeah, that gives me a sense of wonder, too. Yes, CHD is stressful and scary, but wow is it amazing what this kid can do and how his body works.
Look at our own bodies! Before our heart warriors, I’m certain we really didn’t think much about our own physiology. We didn’t think about heartbeats or circulation or the intricacies of the human body. At least, I didn’t. But man, now that we’re kinda immersed in it, it’s pretty amazing right? It’s amazing how far medicine and healthcare has come. And it’s amazing to see where it will go.
I just think sometimes we get too caught up in everything…life hits you hard and fast…and we don’t take time to dwell in wonder about something. It’s a lot like me growing up, not seeing much of the stars and not bothering to really acknowledge that they were there. But now I can take the time and I have the ability to see them and be amazed. Often we let fears and anxieties of the CHD life consume us. I’m not saying it’s wrong to be afraid, or that it’s wrong to be anxious. I understand and accept that those things will always be there and they hit me, too. But I wonder what it would be like if every once in awhile we stop, open our eyes and our minds, and just dwell in the wonder that is our heart warrior….or the wonder of the human body, or the ocean, or space, or animals, or nature, or whatever. I’m willing to bet that in those moments when it feels like life is spinning just a bit (or a lot) out of control, letting wonder keep you grounded with help you a great deal. I know it does for me. So maybe get out there early in the morning or at night, take a few deep breaths, and look up. The stars are out there waiting.
Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around. This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!
Yes, Nolan is finally getting back into school. After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all. I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic. So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home. Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.
We decided to apply for an early-childhood preschool program through our local public school system. Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan. Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).
I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan. He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible. This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro. They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him. I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting. He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on. WOW. The next meeting was with the school nurse to go over his needs and care, The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc. I was really, really impressed.
So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does. All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him? One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion. First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about. He had other thoughts. He looked around and said to my wife, “Well this is disappointing.” LOL This kid!
His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan. The teacher would also have an assistant in the classroom. We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME. ]
So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.
Yes…in true Nolan fashion, he caught a cold the weekend before the start of school. I was like:
So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third. And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!
I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:
Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:
For me it was such a big, moving moment. I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life. And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy. And I couldn’t be more proud of my superhero.
We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room. There was playing! And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.
In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others. This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight. This handoff signified that Nolan is beating the odds!
He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there. He’s also been more of a chatterbox since starting school, which I really like. And – as always – Nolan is super silly! We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!
For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be. Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k. I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok! They’re all different in their own awesome ways, so embrace it. But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied. Ask questions…LOTS of questions. And then ask them again if you need to. Get your child’s doctors involved. Develop a good IEP plan with your child’s school so that you have all possible bases covered. Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!
Hey friends! This will be a brief post, but I just wanted to let all my readers know that on Tuesday, March 21st, Nolan will be going in to Levine Children’s Hospital for a scheduled cardiac catheterization. They’ll be taking a good look at his heart function, pressures, and how well his Fontan circuit is doing. Moreover they plan to do some things to help bring up his oxygen saturations, which have been just a little on the low side post-Fontan. We’re expecting to be there overnight, which is not unusual for Nolan. We appreciate any prayers, kind thoughts, good vibes, etc. I’ll post some updates here later on but if you want quicker updates, you can definitely visit Nolan’s facebook page.
The life of a Heart Parent is a rather insane one. I know you know this: isn’t it amazing how the most run-of-the-mill things become colossal when your heart kid is involved? Take this holiday season, for example.
We made the trek to Florida for a good 10 days to spend with my wife’s family. All the kids did surprisingly well on the drive (which we stretched over 2 days) and enjoyed their time with their grandparents, cousins, aunts, and uncles. The bulk of the time was spent in a condo right on the beach in Clearwater…it was pretty sweet:
The day after Christmas the whole family took a trip to Busch Gardens, and we weren’t completely sure what to expect. Let’s face it: the twins are still shrimps so I wasn’t sure how many rides they could get on. Plus it was really hot, which Nolan struggles with…and if Nolan isn’t happy…well…no one is, if you know what I mean. But Busch Gardens had a decent collection of rides in their Sesame Street-themed area and none of them provided any concern for the kids. I mean look how happy Nolan is here:
The big deal came two days later when our little family had the opportunity to go to LegoLand. Before I get into the story I wanted to give a little background about how we got to go to LegoLand. Merlin’s Magic Wand is a wonderful charity that gifts fun outings to kids with severe illnesses and disadvantages. They were gracious enough to provide our family of 5 with tickets to LegoLand and we gave it to the kids as a family gift on Christmas Day. They were super excited to get to go on more rides and I was excited at the prospect of a theme park that’s made for smaller kiddos.
Now I love amusement parks. Always have. I love roller coasters and all sorts of fun rides, so I was really looking forward to this special day with the family, and Nolan was definitely excited too:
They gave us a little pass to help us get on the rides quicker, they measured Nolan and gave him a wrist band so he wouldn’t have to be measured at every ride (he’s finally 36″! YAY!), and every single person who we ran into there was so kind to all of us. We got on some rides like the train and the merry go round and even this Lego Chima ride that got us SOAKED. There were smiles all around…this was gonna be an awesome day.
But then Nolan said it: “I wanna go on a roller coaster.” He had asked this several times already and we were able to successfully deflect it and re-direct, but this time he was insistent. The problem? He was too small for any of the roller coasters, not to mention I had no idea if a coaster was truly a good idea for him, if you know what I mean. It says it there when you get to the line: not for people with heart trouble. This was looking to get real frustrating, real fast.
But kudos to my wife, who is ever so awesome: she saw there was a ride nearby that could potentially serve as a “coaster” of sorts for Nolan. It was called Merlin’s Challenge:
You’ve been on something like it, I’m sure. You’re in a car, it spins round and round and goes up and down. Nothing too fancy, but the cars looked like trains and to Nolan it was a roller coaster…and I wasn’t gonna correct him. And the height requirement? 36 inches! BAM! So we waited in line and Nolan was super excited as we boarded. Hudson was big enough to ride in a car by himself. My wife went with Grant and I went with Nolan. I sat next to him asking if he was ready and excited. He was practically jumping up and down with excitement. Again…this was gonna be awesome. But then, as the ride operator pushed our lap bar down into place, my freakout started.
Suddenly, in an instant, my mind went racing: this is the fastest, most insense ride he’s ever been on. Don’t let his chest hit the bar. Don’t let his head hit the bar. Don’t let his head hit the back. Watch him. Watch him. What if his lips turn blue? What if his heart rate goes too fast? How will I know? Will I know? How can I stop this ride? Do I flag the guy down? Do I yell “STOP!” Do I yell “EMERGENCY!” How fast can a medic get here? What’s the closest hospital? I was like:
And then the ride started to move and I was like OHCRAPOHCRAPOHCRAPOHCRAP! It was the most scared to death I’ve been in a long, long time. No joke guys, I was freaking out. But then I heard it…the high-pitched, squealing, almost wookie-like laugh of the strongest little 4 year old on earth sitting next to me. I looked down and Nolan was smiling and laughing and looked like everything was a-ok. Only then I was able to relax. It’s blurry because we were going fast, but just look at this face:
I think the ride maybe lasted 2 minutes…but it was 2 minutes of pure joy. Preceded by holy terror, of course…but pure joy nonetheless. It was a moment I’ll cherish forever because after all the surgeries, all the therapies, all the tube feeds, all the meds, and all the concerns about what he might not be able to do, we had a moment where he got to spin, laugh, have fun, and be just an awesome 4 year old boy. It was epic and it meant everything.
This life we lead is a marathon and there will be many freak-out moments along the way, but man sometimes these kids of ours will just surprise us and lead us into a place of true joy.
Our family really wants to thank Merlin’s Magic Wand for their absolute kind generosity to our family and families like ours. Your helped us make memories that otherwise would not have happened. And to the staff at LegoLand in Florida: you guys are amazingly kind…keep up the great work!
As you know by this point, on top of having a CHD, Nolan has also struggled with feeding issues his whole life. Aside from slowly taking a couple bottles from me when he was a couple days old in the NICU, he’s never really eaten by mouth. He had a feeding tube placed before we brought him home for the first time and it’s been a life of tube feeds and feeding therapy for the little man. Progress on eating has really been up and down: we successfully moved him from Pediasure to using blended feeds and eventually managed to get Real Food Blends covered by our insurance, which took quite a bit of work. All the while he wasn’t really eating at all. His morning routine, in fact, involved some meds, some fluids, vitamins, and some Benecalorie, which is a high-calorie product that we mix with water or juice:
During Nolan’s stint on the rehab unit this summer, one of his speech therapists – Grace – gave us a few “local” recommendations for feeding programs. All of them were hours away, which made for a tough choice. In the end, we decided to try the feeding program at the University of North Carolina Medical Center because they had some experience working with heart kids. Once all the referrals were made we had our first appointment for early in the morning in October. Until this point, all of Nolan’s appointments are around 30 minutes away. Now we were facing this:
And not only did we face a nearly 3-hour drive, I had to take the day off work and we had to find people to drop off our other kids at school and pick them up. This was quite an undertaking. We left super early and made the drive…and barely made it there because of traffic. UNC Medical Center is on a really big campus, right next to the University. They have a massive parking deck with a $10 daily maximum and no validation in the hospital…BOO. It’s kinda weird having to go to a different facility after being so used to Levine Children’s Hospital and we didn’t know what to expect. We found the check-in relatively easily and went through all the initial paperwork and whatnot. Then we were sent to a different waiting room and were barely there before Nolan was called back. They got the usual weight/height/sats that everyone measures and then we were taken back to a room.
What’s unique about this program is that it’s run by a team approach. We had a NP from GI come in along with a nutritionist and the feeding specialist. All at the same time. Yes, you read that correctly. Working across disciplines: what a concept! The initial appointment was really, really long: they had a ton of questions, naturally, and wanted a good feel for Nolan’s needs. While they did give us some dry spoon exercises to do with Nolan at home, their first major concern was Nolan’s vomiting. Nolan has always had issues with throwing up ever since he came home from the Norwood. We talked to everyone we could about it and either no one seemed too concerned or no one could do anything about it. And absolutely no one would communicate across disciplines about it. God forbid. So this was different. They said the dose of meds he was on for his tummy was so low it wasn’t going to do anything so they prescribed him a different med – Nexium – that he would take once a day before feeding. Then they also recommended starting him on a different food blend called Nourish:
It’s a plant-based formula that they felt better met his nutrient needs (Real Food Blends apparently was short on some things, hence our need to add vitamins). Plus they said the addition of turmeric in the blend has shown to help kids with their reflux issues. I was skeptical: I just wanted to jump to the feeding and get it done as quickly as possible so we can stop driving so much. But hey, I don’t get to make that choice, right? For now, though, hey held off on the Nourish and just had us work with the dry spoon and new meds on Nolan and meanwhile they would communicate with Nolan’s current speech therapist to see if she was on-board with UNC’s recommended plan (she was, thank God).
We went back one month later and Nolan was showing a little bit of improvement with the vomiting and he did a good job taking the dry spoon. So the next step was to start him on Nourish. They made sure our DME provider carried it (great job on their part!) and told us they’d email the recommendations for switching over. What they didn’t tell us was…dun dun dun…we’d be bringing back to bleeping feeding pump. And when I say bleeping I mean literally bleeping.
This really made me pissed off because we had gone away from the previous Kangaroo pump and were giving his feed bolus by hand. Now we were back to this nonsense and we they wanted us to put him on continuous overnight feeds for 10 hours. TEN HOURS! Did they know how much this kid rolls around in his sleep?
We did try, though: we hooked him up and immediately this godforsaken machine would beep and beep and beep with some kind of error: No Flow In, No Flow Out, blah blah blah. And I hated it. Do you remember the movie Demolition Man? Where Sylvester Stallone kept cursing at that citation machine?
That was pretty much me.
So we fired off an email to the team and pleaded our case for not having the overnight feeds, at least. They responded that it was meant to help create a hunger sensation that would help with feeding and to trust them for awhile.
So there it was…trust. It’s hard to do, and especially hard when the team is hours away and doing something that inconveniences you. But that’s just what it is, an inconvenience for me…ultimately it’s meant to help Nolan, so we sucked it up and went with it.
Well I gotta tell you: between the meds and the feed blend, Nolan rarely vomits now. And even when it seems like he’s going to (usually when he’s upset), I’ve noticed he’s able to control himself and not do it. It’s amazing! We’ve also graduated from dry spoon practice to dipping the spoon in juice and Nolan has been doing a great job. Yesterday he sat down to feed at least 3 times and took at least 20 bites each time. Soon we’ll graduate to dipping the spoon in a little bit of puree. Baby steps. This is going to be a long process but I’m seeing some progress in our little man…and I’m starting to trust his feeding team more and more. It’s amazing what can happen when disciplines work together! So until now we’ll keep up the work and won’t head back to UNC until February, but it’s promising! As long as he keeps eating, we’ll keep driving. Whatever it takes. Go, Nolan, Go!
On Saturday, December 10th I woke up to a now-common sound: “Dad….DAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAD!” I hopped up out of bed and opened the door to our room to see little Mr. Nolan there in the hallway, arms held up, saying, “Take me downstairs?” I bent down and scooped him into my arms and he put his arms around my neck and rested his head on my right shoulder. Almost immediately Grant came up and I picked him up too. It was a very special day. I whispered, “Happy Birthday, big boys!” and I was immediately overwhelmed. Here they are…my two little boys…and they’re FOUR! I remember the mad rush to the hospital at 3am, the C-Section, the NICU stay for both babies. I remember being happy as Grant did good enough to go home after 5 days, and I remember the fear that grew in the pit of my stomach every day as I knew sometime soon I’d have to hand over Nolan for a major heart surgery in an effort to save his life.
In the years since, Nolan has been through so much and continues to endure quite a bit. He’s one tough little boy. And Grant has been a fantastic little (by 2 minutes) brother. Together they’re a wreck: a destructive force of giggles and tackle-hugs. There was a time where we didn’t know if Nolan would see 4…but here he is: 3 heart surgeries later and still smiling and still fighting. Each year at their birthday I reflect on what we’ve all endured. There’s so much to celebrate…so much to be thankful for. We’re thankful for our little family, for physicians, nurses, friends, family.
Happy birthday to my sweet Nolan and Grant…I can’t wait to celebrate year 5!
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.
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
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:
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!