Monthly Archives: February 2016

So I Got This Card…And Now I’m Here…

Hi There!  Did you receive this card recently?

Card

That means you were a recipient of one of my acts of kindness for Congenital Heart Defect Awareness Week!  I really appreciate you taking the time to visit this blog and learn about my son Nolan’s story.  I encourage you to take a little bit of time and read through the posts on here.

Since it’s CHD Awareness Week, I want to also provide some opportunities for you to help spread the word:

  1.  Tell others about those facts that are on the back of your card.  CHDs are the most common birth defect.  There is no cure.
  2. Make some noise!  You can write to your mayor, governor, city council, or even local lawmaker to tell them about the act of kindness you received and that you want to make them aware of Congenital Heart Defects!  The reality is that we still don’t know the cause of CHDs and it’s going to take a lot of research and money to find that out.  Call, write, and email to your representative and ask them to support Congenital Heart Defect research.
  3. Learn more facts!  The Pediatric Congenital Heart Association has a great CHD fact sheet: read it here.
  4. Send your prayers and kind thoughts: there are lots of kids like Nolan out there who need all the prayers and positive thoughts they can get.  They are going through lots of scary things and so are their families.  They can use your support, even if they don’t know you’re sending it!
  5. Support a cause, if you wish.  There are two great ways to support organizations that help kids with congenital heart defects.  The first is Levine Children’s Hospital, where most local heart kids receive their life-saving care.  If you ever want to donate to them you can do so here.  Another great organization close to our heart is Camp LUCK, which provides support for kids and families as well as a medically-supervised overnight camp for kids with CHDs.  They do AMAZING work and you can learn more about them here.
  6. Continue to follow Nolan’s story.  I update this blog pretty regularly and also try to post pictures and videos on his Facebook page.  Nolan is one tough kid and he has been through so much and is full of lots of love and laughs.  He will be going in for his third open-heart surgery this spring: if you could send him some love through kind messages in the comments section on this blog or on Facebook, that would be awesome!

Thanks again for taking the time to visit.  I hope you’ve learned something about CHDs today and I hope you know that not only is it important to me, but it affects thousands of kids and families across the country.  You can keep making a difference by helping us make people more aware.

Finally, I wanted to share a picture of my sweet little Nolan…he’s an amazing boy.  My hero doesn’t wear a cape, he rocks a scar!

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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!

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So You’ve Just Become a “Heart Friend”…

Hi friends! Guess what: it’s Congenital Heart Defect Awareness Week! During the week of February 7-14, heart families around the globe will be celebrating their heart warriors and raising awareness in their communities. I am going to be posting several entries this week so please make sure to come back often and share this blog with others!


 

Today’s post is directed towards a group I haven’t really addressed on this blog: friends. Maybe you know someone who has just found out they’re about to have a baby with a congenital heart defect. As they become Heart Parents, you will now become “Heart Friends.”  Soooooo…now what?  I mean you’ve heard the news, you’re devastated too, but deep down inside you have no idea what to say or do. Well you’ve come to the right place because I want to give you some pointers from a heart parent’s perspective.

You Don’t Need to Know What to Say

I think human beings are wired with this need to say something – anything – when faced with difficult news.  This is how we’ve arrived at those wonderful, brilliant phrases like “Well you know…God will never give you more than you can handle!”  Mmmhmm.  Or how about this one: the Facebook “like” button.  How many times have people responded to a serious or sad facebook post with a “like”?  I mean you don’t actually like that someone had to put their dog down, right?  But we feel like we have to say something, because if we don’t we’re cold-hearted – or at the least – very awkward.  I understand: you want to be a good friend, and you want your friend to feel better, so you desperately search for the right thing to say.  Most times, however, there never is a right thing to say…sometimes you just need to listen, and sometimes you just need to be there.  And don’t forget the hardest part: try to put yourself in people’s shoes, if you can.  It can change how you think about a situation.  This is what’s called empathy, if you’ve never heard of it.  So what is empathy?  If you’re tired of reading and prefer learning about things through cartoons, then you’re in luck:

I love this video.  The biggest takeaway for you is this: rarely does a response make everything better.  What matters is connection.  The good news is that you’re already a friend: you already have that connection.  So just be there, just listen.  Bring tissues…and chocolate.

Educate Yourself

Your friends are going through emotional and informational overload.  As they learn their way through this, it might be helpful for you to do the same.  Check out this fact sheet from the Pediatric Congenital Heart Association: CHD Facts.  Did you know CHDs are the most common birth defect?  Do you know there’s no cure?  Do you know about needed surgeries?  If you don’t, you can definitely find out more: get online and do some research instead of taking your 57th Buzzfeed quiz of the night (no offense to Buzzfeed, of course!).  Listen, you don’t need to become some kind of overnight medical professional: heart parents aren’t either.  But what you can do is show how much you care by at least trying to understand what’s going on.  It goes back to empathy.

Sometimes Being There For Your Friend Doesn’t Actually Mean Being There

Being a good friend is a great, important thing.  You wanna be there during this tough time; you wanna be that rock.  You got this.  And this is awesome, please keep that attitude going.  While your friends are running around to appointments or living in hospitals, though, sometimes the best way for you to be supportive is away from your friends.  Listen, your friends aren’t gonna ask for you to help with things like mowing the lawn or cooking meals or playing with their other kids.  But think about it: who the heck is gonna do that stuff while they’re at the hospital?  Oh yeah…YOU.  Go mow the lawn, make a few meals to stash in their freezer.  Offer to pick their other kids up for a play date.  Go clean their house.  Run an errand, pay a bill, anything…you don’t necessarily have to be there to be there.  This is so important, friends, because this is something all heart families need, but they won’t often tell you about it.  So be a cool friend and just do it!

Be a Good Example: Know When to Stay Away

There will be an exciting time when your friend’s baby comes home and you cannot wait to go over and snuggle that little warrior.  But let’s pump the brakes a little, homie.  Coming home from the hospital is a crazy time: we crave the assistance and connection from people, but it’s also a time for us to learn the “new normal” and to be scared to death of illness and infection.  So we get a little stank and tell people to stay away.  It’s alright.  Just know that you’ll need to sanitize when you come here, and if you have a cold – well – a call or text will work wonders.  It’s a tough time for parents because we desperately want to see people but we also desperately want to avoid going back to the hospital with our little ones.  So we spend months fighting off those well-meaning friends and family members who ignore our rules and come over with their coughs and snot-nosed kids.  Heck no.  Be the best friend you can and know when to stay away.  Your friends will greatly appreciate you for it!  We have some amazing friends that we never met before they just came to our house to drop off food while Nolan was in recovery.  They were new members to our church’s small group and they just signed up to bring us food, and we never even met them before.  It was such an immense gesture of kindness and it will always mean so much to us…we’re so glad to call them friends.

Keep it up, Even When Things Seem “Fine”

Surgeries and hospital stays are scary times.  Once those have passed, it’s easy to look at things and see that things are “fine.”  I say “fine” because nothing’s ever 100% fine.  While the surgery might have been successful, and the therapies might be working, that doesn’t mean the child is cured, that doesn’t mean the parents aren’t scared, and it doesn’t mean things will always be in the clear.  Things can change overnight, and that’s always on our minds.  There are times where we get overwhelmingly sad, there are times where we are exhausted, there are times where we’re just trying our best to get out of bed in the morning…that’s when we need our friends.  This is so important!  Keep being there!

Things Won’t Always Be the Same

Having a child with a CHD means you’re going to live with a “new normal.”  This applies for friends, too!  You’ve got your friend’s back and I’m glad you do, but please don’t expect that after a little while things will go back to the way they were.  I’m not saying a heart parent will stop being your friend, what I’m saying is that their ability to spend copious amounts of time away from home will be less.  Believe me, they want to hang out the way they used to, it’s just not possible.  That, and they’re tired…always, always tired.  But hey, we can’t help it.  Just be flexible, be understanding, and please never stop inviting them to stuff, even if they can’t come over and over.  They’re not being mean or messed up or lazy.  They just can’t.  And when they can, it’s awesome for everyone, especially the heart parent.  It’s like freedom.  So don’t give up!


 

I always contend that each heart kid needs a good team around them, whether it’s medical professionals or family.  Friends are often the forgotten group in this whole equation.  So Heart Friends, I want to tell you that you’re also part of this team…and an important one too!  Keep being there, be strong for us: keep listening and keep loving.  You mean so much more to us than you’ll ever know!

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