So What Do I Pack?

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


 

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.


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!

suitcase

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on February 8, 2016, in awareness, preparing for surgery, self care and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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