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Caring For Your Mental Health

Hi friends: I have something really important that you all really should read – please don’t skip this post.  It’s about your mental health as a Heart Parent.  May is Mental Health Month and I feel like this is a great time to talk about this topic.  I’m not a mental health professional by any stretch, so I had the great opportunity to sit down with a couple social workers at the hospital where Nolan has received his care, and we discussed the topic of mental health in Heart Parents.  I wanted to thank them for making time to chat with me, since the bulk of the material in this post comes from their insights and experience.

MentalHealth

It’s safe to say there’s not enough discussion about this topic in our community.  And since this is a blog from a dad’s perspective, I can say there’s even less conversation about this among men.  But if you really sit down and think about it – if you’re honest with yourself – you know this is something almost all of us will struggle with at some point throughout our journey.  Call it what you will: depression, the blues, the doldrums, feeling down in the dumps, anxiety, stress, anger…we’ve been there.  But a big problem in our society is that there is a stigma around mental health issues.  The perception is if you’re struggling then the problem is surrounding something you did…or you tell yourself that you need to focus on your child and not yourself…or that mental health issues mean you’re crazy or something is wrong with you.  This is not at all the case.  There is nothing wrong with you.  I won’t have all the answers…but I really hope this post starts some good conversation and really helps someone out there.

What We Feel

Do you remember when you received your child’s diagnosis?  Do you remember what it was like when you received the news from a cath that was a total curveball?  That, friends, was a form of grief.  If you’re not familiar with the Kubler-Ross model of grief, there are stages: denial, bargaining, anger, depression, and acceptance.  They don’t always go in that order, some stages last longer than others, and stages will often repeat themselves.  The first time I heard this it made total sense!  For example, we were looking forward (as much as you could) to Nolan’s most recent cath procedure because we were certain they would open up his pulmonary artery and it would lead to better post-Fontan oxygen saturations.  When the procedure was done and the doctor came to see us, he said just what we expected: they stented the left pulmonary artery….and then came the BUT.  Then he told us they found high lung pressures…pulmonary hypertension, and he’d have to go on additional medications and there was the possibility of him having to wear oxygen regularly.  Outwardly I remained calm.  Inside I was a freakin’ volcano of anger.  I was PISSED.  Why?  I didn’t want this, but even worse I didn’t expect this.  This wasn’t the plan.  This wasn’t fair.  Hasn’t my son been through enough?  Didn’t I ask you, God, to look out for him this one time?  What kinda jerk are you?  And on and on…I’m not an angry person at all, but I couldn’t shake that feeling.  I just wanted to grab a chair and throw it.  Then maybe do it again.  Even worse, I was upset with myself for being angry! Luckily on a walk down the hall shortly afterward I ran into the hospital chaplain…he didn’t know I was there that day, but he walked up and just gave me a hug…and it was exactly what I needed, because I sorta unloaded on him and it felt good to talk it out.  From there I was ok with whatever it was going to take to help my son.  In the end, no oxygen necessary, just a new med and regular check ins with the pulmonary hypertension team in the cardiology office.  Have you ever been there, though?  Angry?  Did you feel bad about it afterward?  It’s ok: it’s a natural part of the grief process…do not beat yourself up about it and don’t let someone tell you you’re wrong. Just don’t stay angry 100% of the time!

The loner you care for a child with a CHD, there is a degree of anxiety and depression that show up in some shape or form.  Often the stigma about these things arise after the crisis has subsided.  I remember when Nolan was in the long, 2-month recovery after his Norwood Procedure, I had to return to work because I was running out of PTO days.  At the time I worked at a Hospice…yes, a place caring for dying people.  It was rough.  And it didn’t help that I was a total monster about it, too…God forbid someone else said they were tired.  You don’t know what tired is! Or someone having oxygen saturations in the 80’s…boo hoo.  Yeah, it was bad.  Worse, I felt terrible about it…no, I’m not excusing being rude, what I’m saying is that we can’t expect ourselves to always be perfect when we’re carrying such a heavy burden on our brains.  Instead of saying, “Man, I’m terrible…look at how I’m acting around people,” we can say “Hey I’m struggling, I need to talk to someone.”

Caring for a chronically ill child is very isolating, even if you know other people who have been through it before. Have you ever felt that way? The truth is, guys, Heart Parents often thing you have to be tough, push through, and do it all with very little help.  I know, I’m one of them.  But this is not a matter of strength or willpower…if you’re struggling, you’re not a failure for admitting it!

While it does indeed make you feel vulnerable, admitting that you’re grieving or feeling depressed or anxious is an extremely brave thing to do!  Please, please, please don’t be afraid to be a little vulnerable…you will open yourself to some good, healing conversation.

Survivor Guilt

This one is a really tough one: the internet is a great thing because it keeps us all connected through social media, but sometimes – for me – it can also exacerbate Survivor Guilt.  This happens when you find out another CHD child has passed away, and while you feel really awful for that family and that child, you also struggle with internal questions like why did my child survive and not this one? Did I do something to be so “lucky,” and if so can I do something to lose it? Is my child next?

Guys, this is also normal.  Painful, but normal.  It’s also more complex than just the term “guilt” because what happened isn’t your fault, but you still feel awful about it, particularly because your own child – while struggling – was spared that specific circumstance.  Survivor Guilt triggers the fear of the same thing happening to your child: I know for me, Survivor Guilt is at its worst when things seem to be “fine.”  Then you read about another child losing his or her battle with CHDs and then the reality of CHDs comes roaring back into your life like a hurricane.  Let’s face it, though, the reality is always there…we know that…but it’s in these moments where it really hits us like a ton of bricks.

One of the social workers I spoke with put it perfectly: guilt exists in all parents under the surface and it kicks in the minute your kids are born, whether they’re healthy or not.  And it’s true!  Think about it: I remember vowing that my kids wouldn’t watch TV at a young age and blah blah blah.  Now? I’m quick to throw on a DVD in the car merely to give myself even 15 minutes of mental quiet lol.  You’ve been there, admit it!  And you can easily say, “Man I SO failed there,” or you can just admit it is what it is and continue to work hard towards doing your very best and giving your kiddos an awesome life.

So What Can We Do?

First of all be honest with yourself.  You know yourself better than anyone…so if you’re struggling with anxiety, depression, stress, anger, fear, etc., first admit it to yourself, then look for some help.  You don’t need to shout it from the rooftops like, “HEY EVERYONE! I’M DEPRESSED!”  No, just reach out to a support person who won’t judge you: this could be someone on your child’s medical team (nurse, social worker, physician, etc.)…you can tell them, they’ll help you.  It can also be a fellow heart parent…we’re a great resource for one another!  It can be someone who has a child with a different illness.  Whoever it is, pick one person that you are comfortable being vulnerable with.  Reach out to them and be honest.

Recognize that feeling this way does not make you a failure.  Rather, it is ok to FEEL.  We were not made to be robots…we are human beings with struggles and emotions: don’t let them get the best of you.

Sometimes you do need to see a professional about how you feel, be it a social worker or a therapist.  Again, this is ok…they’re great people who are there to help.  Don’t let the stigma stop you from getting help!  You can start this conversation with a therapist and it’ll be a safe place to discuss and won’t always immediately lead to a diagnosis or medication.  Sometimes you just need to talk or get some good tools to help you through those tough times.

Practice some self-care.  This is really important because while we care for our heart warriors, we can sometimes let ourselves slip.  Self care does not equal selfishness.  Your self care depends on…you: everyone is different and has different things that could meet their needs, particularly while they’re in the hospital with their child.  For some people, switching places with a spouse and going home for a couple hours is a powerful recharging method.  For others it might be taking a walk through the hospital so you’re not very far away.  It’s ok to take a moment here and there for yourself: for me, it was chocolate milk and coffee.  I’d grab a chocolate milk from the nourishment room, then walk to the waiting room to make myself a cup of coffee.  I was only down the hall, but I was away enough to feel like I could breath for a minute, if that makes sense.  I’d sip my coffee and milk and look out the front windows of the hospital at the cars going by…and I’d just zone out.  It was great.  Another good tip is practicing mindfulness.  According to mindful.org, mindfulness is the basic human ability to be fully present, aware of where we are  and what we’re doing.  There’s some great tips on their site, so check it out.  Be there for yourself, too.

Look out for one another.  Heart Dads.  Heart Moms,  Heart Siblings.  Heart Friends.  We are a community and we need to support one another: be sure to acknowledge and appreciate one another!  It just feels so good to know someone is cheering you on, especially when it feels like you’re isolated.  With that said, don’t be an island…seek help from friends, family, your child’s medical team, faith leaders, professionals, etc.  If you want to talk, email me! From time to time I get readers who email me and I love chatting with you and learning about your kids and where you’re from, etc.  I won’t judge you, I just want to help!

Also, I need to acknowledge that sometimes circumstances can seem much too difficult to bear.  If you feel like you’re at the end of the rope or you’re struggling with suicidal thoughts, please contact the National Suicide Prevention Lifeline at 1-800-273-8255 any time of day or visit their site at Suicide Prevention Lifelife for resources and an online chat option.  You’re not alone and people are there to help!  If you’re an international reader (and I’m so thankful for you!) please visit this page for Suicide Prevention resources around the world: IASP.


Guys, this is a tough topic to discuss, but I hope you’ll agree that it is SO important.  Ending the stigma of mental health in the Heart Parent community begins with us.  We owe it to ourselves, and we owe it to our heart warriors to give them the best version of us we can!  I hope that me sharing a few of my stories will help you realize that none of us are perfect and we all struggle throughout this journey…but we can make it through together.

Did this blog entry cover everything?  Of course not.  Please continue to talk to professionals for more information…there’s so much more out there.

*I did wish to pose a question to my readers.  I’ve been thinking of holding a form of online meetup/chat that is an open, judgment-free place for Heart Parents to gather and just talk.  You don’t need to spill your guts…you can just come and listen.  But first I want to know if you’re interested and if it’ll be helpful at all.  I still need to figure out the logistics of it all, but I’m posing the question here first and feel free to answer in the comments: if I hold an online chat where I and other Heart Parents are available to just talk about whatever, do you think it will be helpful and will you consider participating?*

Thanks!

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It’s Right There

There are many times throughout this journey where you’re faced with situations, appointments, and dates that seem like they only exist to crush you.  The next cath, the upcoming surgery, the impending birth of your heart baby.  Sometimes when life gets chugging along, you hit those speed bumps where you get frustrated at the unfairness of it all, and you get angry and life starts to feel like it’s swirling.  It’s during those times where we crave some words of comfort and inspiration.  I know that many of you reading this may be going through those moments right now, so I wanted to share something that inspired me, which came from an unlikely source (don’t you just love those?).  So follow along:

Lately my kids have really been into the Disney movie Moana.  We have the DVD and the soundtrack.  I’m not complaining, though: I actually really like the movie and its music; in fact, it’s often stuck in my head.  Not to spoil any part of the movie, but there’s a part towards the end where one of the characters seems like he is performing a Haka dance.  Now you guys might be familiar with the Haka: it became popular over the last few years once videos went viral of the All Blacks rugby team of New Zealand performing the Haka before they begin each match.

AllBlacksHaka

If you haven’t seen it, it’s amazing:

So after seeing it in Moana, I ended up in a good ol’ internet rabbit hole where I started reading about the Haka dance and it’s meaning.  So the Haka is a traditional Maori war dance performed before battle to display a tribe’s strength and intimidation.  It’s an amazing thing to see and, yes, very fierce and intimidating.

So what does this have to do with us?  Stay with me…

My interweb searching lead me to another popular video of the Haka being performed by groomsmen at a wedding.  It turns out the Haka is also performed during special ceremonies and celebrations and to show reverence to others.  The performance was powerful and moved the bride to tears.  What I really wanted to know, though, was what on earth they were saying during the Haka.  I did some digging and it turns out this particular Haka is called Tika Tonu, which was composted by a chief for his son, who was experiencing some difficult times around 1914.  When I read the words, it blew me away:

What is this problem you are carrying?
How long have you been carrying it for?
So son, although it may be difficult for you,
And son, although it seems to be unyielding,
No matter how long you reflect on it,
The answer to the problem
Is here inside you.

WOW.  Just WOW.  I must’ve read this 20 times and it still moves me.  You see, friends, what you’re facing is hard: handing your baby over to a surgery team, fighting with your insurance, scraping up money for another month of medications.  Whatever it is, it’s hard and it may seem like it’s too strong for you and you don’t know where the strength is going to come from…but it’s right there…inside of you.  Through the tears, the sleepless nights you endure.  You don’t give up and I encourage you never to give up!  The rich, the powerful, the connected – they can’t do what you’ve done so far.  You haven’t crumbled under the pressure…and every morning that you wake up and get out of bed is another day that you’re fighting back and you’re winning.

So yes, while it seems unyielding, you are capable of much more than you even know…so keep fighting!


I love how much this spoke to me, and to think it all started with a Disney movie.  I really enjoyed learning a little bit about this beautiful culture.  Here’s the wedding Haka video (with translation) for you to enjoy (look how fierce that bride is when she joins in!):

The 3forCHD Project

You guys, I am super excited about this post because I get to announce a really awesome opportunity to spread CHD Awareness.  So about 3 years ago I did something called the 32for32 project, where I did 32 acts of kindness for my 32nd birthday in order to raise CHD Awareness.  The following year I was able to do some lobbying for CHD research in Washington, DC, which was amazing.  Last year I did 10 acts of kindness in 10 locations in the area and when you looked at them on a map it made the shape of a heart.  Each of those projects gave me a really great chance to teach people about CHDs while doing some great things for people in need in my community.  Over time I’m heard from people who were inspired by this and wanted to be a part of it somehow…well here is your chance!

I’m happy to announce the 3forCHD project!

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During this year’s CHD Awareness Week, February 7-14, I want to unite heart families and friends all around the world and encourage them to do three acts of kindness in an effort to educate people about congenital heart defects and hopefully play a part in finding a cure.

Three.  That’s it.

Three things: that can be feeding the homeless, volunteering at a nonprofit, bringing treats back to the staff at the children’s hospital where your heart warrior got their care. It can be anything!  It doesn’t matter how much money you have, it doesn’t matter where you live.  All I’m asking is for all of you to join me during that week to make a real difference in people’s lives.  Imagine if 100 of us do this: that’s 300 acts of kindness…300 real, tangible ways for us to help people in need!  That’s AMAZING!

So I need you to step up and do this with me, I need you to be excited about this with me: I want you to share this with your friends and family.  Invite them along: maybe partner with other families where you live and do something awesome together.  Whatever it is, I know that together we will make a big impact!

I’ve made a Facebook event page where you can “join” the event (keep in mind you’ll be doing all these activities right where you live) and post pictures, videos, and stories of your acts of kindness using the hashtag #3forCHD.  You can use the same hashtag to share throughout all of social media leading up to and during the event.  Let’s take this thing worldwide!

I’ve also made up this handout for you to use:

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Print some out and give them out when you do your 3 acts of kindness.  Once Feb 7th hits, I will add a “sticky” post to the top of my blog that will welcome anyone who has received this handout and is brave enough to come here to this blog.  It’ll have more information about CHDs and what they can do to continue being involved.  It’ll remain there for a couple weeks after the event, too.

Will this require some money? Maybe.  Will this require your time? Yes.  But what we need – most of all – is your heart.  I believe that if we give back, with all our hearts, we will create a movement where people know about CHDs and will help us make enough noise to increase funding for research and one day find the cure.

So I have just one more question for you…

WHO’S WITH ME?

 

 

OhCrapOhCrapOhCrapOhCrap

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:combo

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:

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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:

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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:

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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:

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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:

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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!

 

A Lot of Miles and a Lot of Trust

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:

morningfeeds

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:

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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:

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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.

pump

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?

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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!

A Reason to Celebrate

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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!

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The Intersection

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Every hospital has The Intersection.  Every heart parent has stood at The Intersection.  This is the place where it all becomes real, where it’s go-time, where you whisper that last fervent prayer before letting go.  You woke up early to come to the hospital for a surgery date you’ve been dreading, you’re ushered up to a pre-op room where people come to get you to sign here, initial here.  Maybe you review some last-minute information and meet the surgery and anesthesia team.  But eventually the moment comes where you enter The Intersection.  At our hospital, you step out of the room and into the hall where it forms a T: this is the place where a group of people (and your child) turn right while you have to let go and turn left towards the waiting area.

The Intersection is a heavy, heavy place.  It’s the place where fear and doubt seem the strongest and where you muster every last bit of hope left in your body and try to project it on the people turning right.  For a brief moment all those thoughts cross through your mind: did I pray hard enough, have I been good enough, have I been a good parent, did I give enough hugs, was this the right choice, are you sure it couldn’t just be me instead of him?  It’s such a tough place because to turn right is handing your child over to certain fear and pain, which is necessary to live.  To turn right is to be filled with fear and tears.

I don’t write this to merely drum up our old fears, but rather I spell them out for a different reason: to thank a group that I think often goes overlooked.  A couple months ago I was asked to share Nolan’s story with our surgical services team at work.  This was a massive group of nearly 200 people all in their green scrubs and funny giant shower cap thingies.  They have their staff meetings at like 6am, which is bonkers, but I digress.  As I walked to the auditorium, I was thinking in my mind what to say and this idea of The Intersection hit me like a ton of bricks and I just had to share it.  So I shared Nolan’s story and at the very end I said to them, and I’m paraphrasing here:

“There’s a place I call The Intersection.  Where Nolan goes one way and I can’t follow, so I have to go the other.  This is a really tough place to be because I know where he goes there is pain, and where I go there are tears. But as I stand here in front of you I want to thank you, because when he makes that right turn I’m essentially handing him over to you…the people I don’t even see…to save his life.  And without you, there is no Nolan, so I thank you.”

I gotta tell you, it took everything in my power for me not to lose it there.  Not to mention it was 6am so I was already a wreck as it was.  But I meant it.  You see, while our amazing surgeons make the news and magazine covers and whatnot, there’s a whole team of people behind those operating room doors who we will never see or meet.  They keep things clean, keep things stocked, keep things moving smoothly and Lord knows what else they do.  They are so important to the success of these surgeries and I’m not sure they get the recognition they deserve.

So while I know it’s painful to think about The Intersection, remember that it’s Thanksgiving week: let’s channel those thoughts into some genuine thanks for the surgical services teams who have played such an under-the-radar role in the success of our kids.  I encourage you to share this post on social media, maybe write a card or note to the surgical services team at your local children’s hospital.  Whatever it is, just make sure you let them know how much you appreciate that they’re there on the other side of The Intersection.

If you’re reading this and you’re part of the team who wears the green scrubs and the funny shower caps: just know that our family thanks you for your hard work.  Let this recognition encourage you and your teammates to know you are loved and appreciated for your work…keep it up!

The Door

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I’m sure before you had a child that was born with a critical illness, you knew of your local Children’s Hospital, but you didn’t really know about it.  You’ve probably said to yourself, “I’m glad we have it, I just hope we never have to use it.”  For you that wish didn’t come true and ushered in a reality that you never expected.

Like all of us, you’ve made many trips to and from these hospitals and walked through the same set of doors over and over: rain or shine, sleet or snow, holiday or humdrum Wednesday.  As we left our – hopefully – last surgery with Nolan, I started to really think on the significance of the front door of the hospital.

The Door can lead to our greatest fears, but also our greatest hope.  There have been way too many times where I’ve had to walk from the parking garage to these doors, and every step closer makes me more scared and more nervous.  Because on the other side of The Door is something scary for my son, something unknown, something painful, but something necessary.  But also on the other side of those doors is a team of people who have the professional training to give your kid a shot at a full life.  This door also leads the way back home…it says “we made it.”  The Door leads to thanksgiving…to joy…to peace.

The Door also leads to suffering. And before you think I’m getting too heavy, just let me say that I believe we don’t talk about suffering enough when it comes to healthcare.  Because it makes us uncomfortable and carries a negative connotation.  But like it or not, this is the reality of what occurs every single day at a hospital: innocent kids given a diagnosis they don’t deserve, losing time on a childhood that should be free of pain and fear.  There are parents who walk through those doors everyday consumed with thoughts like: is he going to make it? How am I going to pay for this? How long? How much more can I do? What about work? And on and on and on.  They suffer, too.

Healthcare workers: you have such a power within your hands to impact suffering.  Sure, if my son hurts you give him something for it.  If I’m cold, you give me a blanket.  That’s what’s considered inherent suffering.  It’s tied to the thing we’re here for.  But what else?  There’s another type of suffering called avoidable suffering and preventing/reducing this takes a lot of effort and isn’t something you learned in school.  What does this look like?  It’s the worker(s) that walk past the lost parents in the hallway, because “I’m too busy right now.”  It’s the worker that doesn’t make eye contact.  It’s the one who talks down to people.  It’s the one who won’t realize that the hospital isn’t quite home for a sick kid, and won’t go beyond the scope of their job description to make that better.  It’s the worker who operates off of a checklist instead of a heartbeat.  It’s the one who sees a parent as “pushy” or “snappy” without realizing that we…are…suffering.  Once you realize that and try to put yourself in our shoes, it will drastically change the way healthcare is delivered.  Because human connection and empathy are a powerful way to help heal.  I know you didn’t get into healthcare for checklists, productivity reports, and to spend half the day scouring the building for the last working med pump.  When you empathize and see suffering for what it is, you will reconnect with the reason you got into this business.

What about those who walk back out the doors and re-enter their lives?  To friends and family: you play a crucial part in alleviating suffering, too!  Please realize that while the surgery was a success, and the prognosis is good, we’re going back into a world that’s forever changed.  There might be medications to give, multiple appointments, tube feeds, endless stops at the pharmacy, loss of work, increase in stress, and a new schedule that basically says we can’t hang out like we used to.  We want nothing more than to go back to that, but this is our new reality.  And it’s really, really hard sometimes.  And we need you.  Don’t stop inviting us to stuff: one day we’ll surprise you and say yes.  Don’t stop asking how you can help, even if you don’t know what you’re doing.  Realize that while we might wear a smile, it’s not always that way in our minds.  We’re always going to worry about the future, that’s just how it is.  So text your friend, send a card, cook them a meal…just let them know they’re loved.  And try to understand what it would be like for you if the rug was suddenly pulled out from under you and you’re left to put it back together.  And I also can’t let this paragraph end without saying that unfortunately there are people who walk through The Door empty-handed forever.  I cannot imagine the pain these families face. Please be there with love and patience and kindness.  If it was you, you’d want the same.

The Door is a place of great heaviness, but there are things we can all do for those who are currently standing at The Door.  If we realize they have fears and are suffering, we can surely do things – through compassion and empathy – to give them the power of hope and joy.  They can walk into the hospital knowing they’ll be treated like family.  And they’ll walk out knowing they are truly loved.

They Tried To Make Us Go To Rehab, and We Said…Whatever it Takes

So this was new territory for us…the Rehab unit.  While Nolan’s weakness was unexpected for us, we are always willing to do whatever it took to make him better.  So to the 4th floor we went.  We met with Dr. Tsai, who was over that unit and he was a very kind, compassionate guy…we really liked him.  For some weird reason we technically had to be discharged from the hospital and re-admitted to the Rehab floor, even though we never once left the hospital.  But oh well.

One thing became clear right away: we were outside the friendly confines of our usual CVICU and Progressive Care units, where caring for kids with CHDs is right in their wheelhouse.  Here?  Not so much, but that’s not a bad thing.  We just had to do a lot of explaining and re-explaining, and – of course – resetting the blasted pulse ox machine so it wasn’t beeping every 45 seconds.  A slew of therapists came through to do initial evals on Nolan and we learned that everyday except Sunday he would have up to 3 hours of therapy a day and they would come in every afternoon to post the next day’s schedule on a calendar in our room, which was pretty cool.  It would have the therapy, the therapist’s name, their picture, and length of time.  They even scheduled nap/rest times.  I actually liked knowing who was coming and when, as opposed to other floors when people just show up (you know how that is…come on, people).  Otherwise the staff worked pretty well with us as they got used to Nolan and let us kinda control how often they’d come in and bug him and even let us give most of the meds if we were able.  That really ensured a more restful night…for him, not for us: we slept on an awful, skin-eating vinyl couch, but whatever.

On Nolan’s second day they jumped right into things like helping him stand and use his arms for play:

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It was a rough go at first: he was still very weak and still on oxygen so things were slow-moving and he got tired easily.  But this is Nolan we’re talking about, so he’s a trooper!  We enjoyed walks around the hospital in his wagon and even fun time in his room…one of his favorites was playing Bingo:

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The combo of letters and numbers was right up his alley.  We’d use the TV in the room to tune into the radio station in the lobby and he would call and say “BINGO!” whenever he’d make a line.  Then two of the interns would come up dressed like Disney characters and bring him a prize.  He LOVED it.

So on and on it went: Nolan continued to work really hard and began making some good progress.  He even got some visits from the therapy dogs:

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We got to meet some families there in that unit who had been there for some time and would be there for some time.  Their kids were going through some real difficulties and my heart went out to them.  We knew Nolan would regain his strength and for that I’m thankful.  Nolan started getting more energy (and got pushier and bossier, as is his custom) and eventually we got to this point:

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That is a post-Fontan, little beast, completely walking on his own with NO oxygen! YEAAAAAAAAAH BOY!

So the next step, then, was to get the heck outta this place and get back home!  WOOHOO!  And then finally…33 days after we went in for the Fontan…Super Nolan walked back through those hospital doors and we made our way back home, where we can focus on an amazing future for this little nugget:

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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…