So What Do I Pack?

This is the second entry during Congenital Heart Defect Awareness Week (Feb 7-14).

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I’ve heard this question asked countless times, whether in person or on social media: what do I pack for the hospital? I’m going to try and compile a helpful list, but it’s by no means a comprehensive list: everyone is different.  But these are a few helpful things to get you started:

Clothing…for baby and for you

The clothing issue is where most soon-to-be heart parents have questions.  I will say that post-surgery, in my case, clothing isn’t really an option due to a chest incision (or open chest in Nolan’s case) and all the tubes and wires and whatnot.  So you can use things like socks and hats, so gather up a bunch of those and bring them to the hospital.  Let your nurses know about them because they’re often very willing to help by putting on the hats and socks for you.  I know that when Nolan was in the hospital it was always a nice surprise to walk in and see that they’ve put him in some cute little socks at least.  While having your child hooked up to all those pumps and tubes, it might make them seem a little less human, it’s amazing how a tiny pair of fuzzy socks will give that humanity right back.  Now there will come a time where a lot of those tubes and wires come off – and that’s awesome – so you will eventually need some clothes and I recommend the side-snapping variety, which will give access to the baby’s chest with minimal fuss and you can still stick out any wires from it without a problem.  And when you go home you’ll find it makes it easier to dress your baby.  While sometimes these can be tricky to find in stores, you can also find them online.  View what Target has in their inventory by clicking here.  Outfits that button up the middle are good too.  Why not zipper outfits?  Again at some point the’ll come off all the tubes, but there will remain some leads attached to them to monitor heart rate, pulse ox, etc., and the button outfits will allow the leads to stick out…not so much with the zipper.

And for you, don’t forget to pack clothes for you.  You’re there for a long run, especially if you’re not close to home, so pack a couple changes of clothes.  And dress comfy too, no need to impress.  It’s also helpful to bring something long-sleeve in case the hospital is cold to you.

Swag for Your Warrior

Maybe it’s a fun blanket, maybe a stuffed animal, maybe a mobile.  Whatever it is, your heart warrior is still a baby, even though he or she has gone through some major surgery.  Having those cute baby things there is very sweet.  Nolan is a twin and we believed he was used to being in the womb and hearing his brother’s heart beat, and now he was missing it while in the hospital, so we found this giraffe that would play a heartbeat sound.  The curve of the giraffe’s neck and head fit perfectly along the top of his little head, so we’d snuggle it up to him with the heartbeat sound and I really do think it helped keep him calm.  If you’re arsty, bring some craft supplies or pictures and decorate the room.  It’ll help take your mind off things and bring a personal touch to the hospital room.  We decorated Nolan’s room with snowflakes for the holidays and even put up Happy New Year signs, etc.  On those quiet nights when Nolan was just maintaining, it was peaceful for me to draw him a picture or make him a little sign.  It’ll allow you to bring in a little bit of home, so bring pics of the family along too.

Please Don’t Forget About You

This may sound nuts – you’re there for your kid, after all – but self-care is really important during a hospital stay too.  If you like to read, bring a book.  Put music you like on your phone and pack some headphones.  If you have a hobby that isn’t too loud or weird, bring it with you.  There is A LOT of sitting and waiting when you’re in the hospital, and if you don’t practice self-care, you’re going to lose your mind.  So bring things that allow you to be you every now and then.  Got a favorite blanket and/or pillow?  By all means bring those if it’ll make you more comfortable.  Let’s face it: if you’re in a more comfortable state of mind – as best you can be – you’ll be a bit more focused, you’ll pay more attention, and you won’t feel like you’re constantly stuck in a blender.  It’s ok to think about things for yourself.  IT’S OK.  It doesn’t make you a selfish or terrible person, it gives you a shot to be the best parent and advocate that you can be.

Pen and Paper

This is something I wish I did when we were in the hospital initially.  You are going to be bombarded with emotions and with jargon.  Lots and lots of delicious jargon.  And lots of people will come in and out of the room saying this and that and looking at this or that.  And then when the doctors come to do their rounds, they’ll ask if you have any questions and you’ll be like UHHHHHHHHHHHHHHHHHHH.  So bring something to write in, and write down anything you want: what the nurses and doctors said today, any questions you have, any concerns you have, etc.  And break that thing out when it’s time for rounds.  This will be so worth the effort, trust me.  It will help you be a much more engaged parent.  Maybe you want to journal your experience: write down how each day went and document your Warrior’s progress. I bet that would be something awesome to keep and show them when they’re older!

Don’t Forget the Details

There are other small things that you’ll need to remember or prepare for.  Did you pack your phone charger?  You definitely won’t want to forget that.  What about those clothes you packed?  You don’t want to get funky, so check and see if there’s a washer and dryer on-site that you can use and whether you need to bring your own detergent.  If you’re staying at a Ronald McDonald house or someplace similar, you’ll want to check into that too.  Don’t forget toiletries too!  That goes back to the thing about not being funky.

And how about that hospital food?  We got meal tickets everyday, which was awesome…but after 2 months of daily stops there, it started getting a little mundane, no offense to the hospital.  So look into places to eat in the area: somewhere you can pop in, grab some grub, and get back without losing too much time.  Even better: find if there’s a couple places that will deliver to the hospital.

Have a plan for visitors too.  Some ICUs have restrictions and that makes it easy, but if you don’t want a billion people, including third cousin Ray-Ray and aunt Junebug, then you need to have a plan.  Tell people early, and bluntly, about your plan.  If people are supper offended, let them be…they’ll either get over it or they need to do something else with their time.  Your focus is on you and the health of your child.

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I hope this list is a good starting-off point for you as you prepare to enter the hospital with your new heart warrior.  It’s never going to be an easy trip, so I hope this list makes packing a little easier for you.  If you have more questions about what to pack, please feel free to leave a comment: maybe there’s something I forgot to include!

The Man in the Mirror

A little while back I wrote an entry about self-care that included things like aromatherapy, healing touch, breathing, getting a hobby, etc.  Since then, I feel like I’ve stumbled upon something that should’ve landed on that list, had I known about it at the time.

We can all agree that it’s very important for Heart Parents – and anyone really – to practice kindness, empathy, and compassion towards others, right?  These are all very important things to do so that we can make the world a better place.  The reality, though, is that sometimes kindness, empathy, and compassion can seem a little finite.  If you picture it like a gas tank in your body, over time you’ll end up on E and all burned out.  But if you work on keeping that tank full, you don’t have to worry so much about that burnout.

This begins with you.  It’s not about loving harder or giving more hugs or high-fives.  It’s not about digging deeper for more empathy.  It’s about taking a long, hard look in the mirror and realizing that often the person that needs kindness from you is….you.  You see, there’s only so much of yourself you can give before you have nothing left, no matter how helpful you want to be.  And when that happens, you will pay the price physically and mentally.

A little while back I was able to learn a little bit about this concept of compassion fatigue, which is a by-product of being compassionate.  It doesn’t make you weird, it just means you are actually compassionate, but you’ve work it out like a muscle that you exercise too hard.  You need to rest, you need to recuperate to get that strength back.  One of the biggest things I’ve taken away from this is that it’s important for us – whether you are a Heart Parent, a nurse, a doctor, etc. – to practice kindness towards ourselves.  So many of us give but never give to ourselves.  So what does this all mean?

Try to do something nice for yourself…maybe not everyday, but every few days.  I’m not saying you need to run off to the beach or buy a sports care on the reg (but if you do go to the beach, bring me along yes?).  These kind acts are simpler: getting outside for some fresh air, going for a bike ride, doing something that makes you smile or laugh.  Take a moment of your day to re-fill your compassion reserves.  For me, my nice thing that I do for myself is coffee.  When it comes to coffee, I’m a little like this:

I love my coffee…a lot.  I’m not the person who drinks excessive amounts of it, just 1 or 2 cups a day really…but everyone who knows me knows it’s like my one big vice (if you could even call it that…I mean, c’mon son).  Anyhow, what I started doing some nights is once I put all the kids to bed, I come downstairs and make myself a cup of coffee.  Just one.  Then I sit on the couch and I drink my coffee and I just…exist.  Sometimes I watch a baseball game, sometimes I stare off into space, sometimes I look for funny memes online, sometimes I have deep thoughts (“I swear DJ Snake’s new song is just a slowed-down version of his last one”).  It doesn’t matter what I have to accomplish before the night is done, it doesn’t matter how badly the kids have utterly destroyed our house, doesn’t matter how high the pile of dishes are.  For those few moments I give myself the gift of coffee and the chance to be and the chance to breathe.  It doesn’t take long, but I find it to be an incredibly powerful and centering moment.  I usually feel quite refreshed and energized and I finish all the things I need to do that evening.  I find myself sometimes really looking forward to my small moment with coffee.  Like if I am wiped out from a busy day at work or my kids are being absolute hellions…it’s as if I say to myself, “I just need to get to the coffee.”

This doesn’t cost me a ton of money, it doesn’t take a lot of effort, and it’s not hard to do.  What is challenging is finding that way to be kind to yourself. This is also not selfishness…it’s survival.  Don’t let your kindness be something that pulls you away from your family or your work or other responsibilities (“The HLHS Dad said to be nice to myself, so I’m quitting my job and moving to Palau for 6 months!”  NO.).  Find those small things that just make you happy, then find ways to use them to rejuvenate your mind, body, and spirit.  You’re going to find that this is keeping you from absolutely losing your mind.

So today, going forward, I want you to never forget the man in the mirror: be kind to him as he is kind to others.