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The Best Kind of Handoff

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:

Bruh really

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:

NolanSchool1

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:

NolanSchool2

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!

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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!

An Upcoming Cath

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.

THANK YOU!!!

NolanBowtie

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:

buschgardens1

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:

legoland1

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:

merlinschallenge_1800x900

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:

mathmeme

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:

legoland2

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:

unc-map

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:

nourish.png

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?

swearingmachine
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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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!