Easing the sorrow with love

This week has been a particularly rough one in my little Facebook CHD corner.
Just in the past three days, 4 heart kids (that I know of personally) have gone to be with Jesus, and it breaks my heart in a million pieces to think about what these families are going through.
Unfortunately, it's all too common in the heart world, but it doesn't make it any easier to stomach the loss of these precious children.  I feel compelled to just DO something.  Something tangible.  Something meaningful.  Something more.  And then it hit me-there is something I can do that will be meaningful to someone I happen to know and care about very much.  And you can help.  It won't take away the sorrow that fills the heart community, but it can help one family realize that there still are caring & loving people in the world, and that their son will never be forgotten.
My friend Michelle lost her son Nathan in January due to complications following his 4th open heart surgery. (Read about sweet Natey here) We live in Minnesota, which some of you know as "land of tundra", and his gravestone still is not set.  Due to the extreme climate changes, the cemetery in which Nathan is buried has very specific guidelines when it comes to headstones, which end up raising the cost significantly.  The family, who has tapped out every resource possible just trying to pay medical bills and provide for their two kids who are still with us, needs our help!  They'd like to get Nathan's headstone engraved and set before winter sets in.  I know, blog readers, that you are generous and kind people.  I know that you have love in your hearts.  I also know that most of you have not had to experience the loss of a child.  Myself included.  I cannot even imagine what that's like, nor do I want to.  So what do you say?  Can we help this family?  I think we can do it.  Please follow the secure link below to contribute what you can.  Every single dollar helps.  Please think about what you would do if you were in this situation-and I sincerely hope you never ever have to be.  This world would be a much better place if we were all a tiny bit more helpful. 
Can you skip your Starbucks for the day?  For the week?  I know I can. 
Click here to help!

Guilty pleasures-we all have em.

  Mine?  These guys.

Yep.  Duck Dynasty on A&E is, hands down, my number one guilty pleasure.  Why?  Who knows.  Maybe it's their common-man-makes-millions story.  Maybe it's the rantings of Si, the lovable uncle who seems to have, to put it kindly, "lasting effects" from Vietnam.

But probably the biggest reason I love this show is because of their family dynamic.  They may pick on each other, and drive each other crazy.  But at the end of the day, they are always there for each other.  Through thick and thin, they are family.  Period.  And nothing gets in the way of that.  They still believe in sitting down to have a family dinner, and they start that dinner every time with thanks to God for their numerous blessings.  That, my friends, is good TV.  Don't judge.

"She had a transplant, she's fixed, right?"

It's a common misconception that when someone gets a heart transplant they are "fixed."  I can definitely see how people would think that, but it's simply not true.  Yes, a heart transplant can allow a person to have a much better life.  It can make it so that they finally feel better, can climb stairs, run & play, or just live.  Heart transplants save lives.  But it's not an easy road, that's for sure.  Here, I'd like to shed some light on what it's like to live in the transplant world.  It's my hope that I can help others understand why there are some areas in my girls' lives that are very very different than their childrens' lives.  And also why it's so important to really adhere to what some may call my "paranoia" about the things we can and cannot do.

First things first: a heart transplant (or any other organ transplant) is trading one disease state for another.  Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system.  In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times.  These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them.  They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer.  In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low.  They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now.  So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause.  Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.

Another common myth: once you are transplanted, that organ will last forever.  False.  Most heart transplants last around 10-ish years.  Now this is just an average.  Plenty of people live 20 years without needing a new heart, and others will need another one two years out.  For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted.  Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will.  And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above.  So I don't.

Germs, germs everywhere.  Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants.   Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies.  Public pools?  *Shudder* Not for my kids-I'd be better off letting them swim in the toilet.  School, of course, is a necessary evil.  But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style.  But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school.  With hand sanitizer.  And a bubble wrap suit.  Just kidding.  (Wouldn't that be cool, though?!?!  Ha ha.)

Constant monitoring and doctor's visits.  When was the last time you had to bring your 6-year-old to have a bone scan?  What's your three-year-old's resting blood pressure?  How's your daughter's fluid status today?  Don't know?  To all of the above, I say: been there, done that.  Every single organ system is monitored in a transplant patient.  Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like.  Sometimes they take biopsies.  Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table.  My 6-year-old could direct you around the Mayo Clinic.  It's just a fact of life for us.

Still think transplant's a permanent fix?

In no way do I mean to gripe and groan about transplantation.  If not for transplants, and organ donors, neither of my children would be alive today.  I am a tireless advocate for organ donation.  I will never rest.  We are absolutely and totally blessed with our two beautiful girls.  They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing.  It's just that it's not an easy road to travel.  Is it worth it?  You bet.  I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman.  They are both doing extraordinarily well.  They live their lives as normally as possible, and that's what matters.  They'll never be the same as their peers.  We have basically fought for every single aspect of everyday living that most take for granted.  That's ok, though, because it has made us open our eyes to the blessings that surround us.  We really have stopped to smell the roses.  We just don't touch them.  Fungus on the rosebushes, ya know.

The upside of being a Heart Mom

Yeah, I know.  You are probably looking at the title of this post and thinking "Is she out of her mind?!?!"  Well, yes, but that's beside the point.  There really is an upside to being a heart mom. Allow me to explain..
While I would love to have never had the need to even stick my toe over the line into the heart world, here I am.  There's no going back from it, so I may as well seek out that ever-elusive silver lining to this cloud, right?
When you become a heart mom, you are thrown into what I like to call a swirling vortex of terror.  It's like getting the proverbial rug pulled out from under you, in the middle of a rainstorm, while being struck by lightning.  More than once.  When you get the chance to breathe again, it's like this sixth sense kicks in that you weren't even aware you had.  The need to search out others like you.  To find out all that you can about what's wrong with your child, and how you can go about "fixing" it.  (And once you've been in the heart world for longer than five minutes, you quickly learn there's no fixing things, just dealing with it.)
If you're lucky, like me, you stumble upon a community of heart moms.  It's like they have radar: "There's a new one of us out there, we must go support her!"  These heart moms swing into full force.  They coordinate meals, bring care packages, send cards, start prayer chains, and swoop in with every bit of advice that they have.  They let you cry and whine, play the "why me" game, and then help you to suck it up and move forward.  They sit with you while your child is in their umpteenth surgery, even if you don't want to talk at all.  They get coffee, hold your hand, and pick you up when you crumple to the floor in fear.  And if they can't get you to get up, well then they just plunk right down with you.  When you have a long hospital stay, they rally the troops to fundraise for your family, offer to watch your other children, walk your dog, feed your cat.  They bring you chapstick, lotion, gas cards and hugs.  They flood your Facebook wall with well-wishes, prayers and love.
Even if you've never met these people in person, they become your family.  They speak your language-one of caths, ejection fraction, Lasix, chest tubes and Heparin. Talking with them is a relief, because they get it.  Without long, drawn-out explanations, they just get it.
The strongest people I have ever known-ever-are the heart moms that have lost their children.  Even in the midst of their grief, which will never go away, they celebrate every triumph with you.  When your child gets out of the hospital, they are the first to send a text, or drop off a meal.  It amazes me. My children are my heroes, but the heart moms I know and love are a close second to that.
No matter the time, the situation, the place, I know that I can count on them.  I hope they know that I am more than happy to return the favor.

Blogs and junk food: the new psychologist?

In the name of full disclosure, I am warning you all right now that this is going to be a whiny post.  I am in one of "those" moods today, and I need to get it out.  Writing has always been my therapy, and now that I have a blog, you all get to see inside my mind.  Aren't you lucky?
Today, I am tired.  Bone-weary, exhausted, worn out, drained.  I have been feeling lately that I cannot catch a break.  I know, in that oft-hiding logical part of my brain, that I am indeed very lucky.  But today my emotional levee has broken, and out comes the flood of frustration.
You know that old saying about the straw that broke the camel's back?  Just about 20 minutes ago, that happened to me.  The ridiculous part is that said straw is something miniscule, something that (hopefully!) will be easily fixed.  It was just the final insult my brain can take this week.
On top of the usual financial woes and the rollercoaster ride we call parenting, this week has been particularly crazy.  Madi has been off-the-wall hyper and disobedient.  To be fair, she has been cooped up much of the summer, as the weather has not been nice enough for her to be outside.  I think she's ready for school.  And frankly, so am I.  For her to be in school, that is.  If we finally get everything all squared away for her to go, anyway.  Yes, my child was the only one forgotten when doing up the transportation for this year.  And it was just noticed on Wednesday at the open house, leaving no time whatsoever to get it fixed in time for the first day on Tuesday.  Why they need a few weeks' notice, I don't know, but I was not in the right frame of mind to be asking questions.  There were what seemed like gazillions of children running rampant in the school that night.  A school with no air conditioning, and all the parents and children and staff all together equals chaos.  Hot, sticky, sweaty, chaos.  So I left my contact information with a promise of a follow-up phone call the next day.  I got that, from Madi's case manager.  She's very very nice and I know none of this is her fault.  Quite frankly I feel bad for her too.  I am sure the woman doesn't get paid nearly what she's worth and she has to deal with transportation snafus too?  Yeesh.  So I call to check in today and they told me that somewhere along the line the ball was dropped (DUH!) and that they hope to have it all squared away next week.
Normally, such a situation would not bother me so much.  But it's seeming more and more lately like I can't get anything done in a straightforward manner.  My brain is crying from all the fixing it has had to do lately.
And then the family drama.. oy vey.. we won't go there but let's just say that my very large family has dwindled to very few.  By their own choice-since they think I am the devil for standing up for what I believe in. Leaving me feeling somewhat alone and support-less as compared to where things used to be. But that's another mess of its own that doesn't deserve my brainpower at the moment.
So yes.  I am whining.  And I am having a pity party for myself.  I am, at the moment, one of those "Why can't anything go easily for me" people.  Now I never said that I liked to be that kind of a person but let's face it, people: sometimes we all need to pout and grumble.
I have a plan in place, though.  Tomorrow, I am going with my best friend to the state fair.  I plan to drown my sorrows in plenty of fried foods-on-a-stick.  Calories be damned!  Between my blog vent here, and the overload of junk food tomorrow, I am going to be just fine.
I can smell the cheese curds now.  Smells like therapy.

The Dream Team

Between Madi's hospital stay post-transplant and Sydney's hospital stay post-transplant, I imagine that I have spent enough time in the Cardiac ICU at Mayo to call myself something of an expert.
What does that even mean, you say?
Well, for one, I know where the best places for phone reception are.  What times the echo techs generally come around.  When the teams do their morning rounds.  Where the "treasure chest" is located.  My feet have worn a path around the unit from days of pushing strollers or pulling wagons in endless loops, hoping to soothe an irritable child.
I hear about other hospital programs, and consider our family very lucky to have been guided to the Mayo system when we started our whole journey.  A Cardiac ICU is not a fun place for a family to be, but if you have to be there, you may as well make the best of it.  I so wish that all healthcare systems worked the way Mayo does.  Every morning, when rounds take place, you are reminded over and over that these people really care for your child.  As you stand there and listen to the daily pow-wow between cardiology, neurology, hematology, pharmacy, dietary, occupational therapy, physical therapy, and the intensivist, you know without a doubt that your child is getting the best care possible.  Each and every day, all of the members of your care team meet and discuss your child.  They make adjustments to their care plan as needed, and make sure that everyone's on board with all decisions made.  It's like having a care conference daily, and it's unbelievably reassuring.  As a parent, the fact that I was always included was a big deal too.  It made me feel like my input was always important as well.  They validated my feelings and concerns and made sure to help me in any way that they could.  When you have a child that's been through what my children have been through, the security that brings is immeasurable.  When you have team-based care, the mistakes are few and far between (and in my case, for both of my children, there were no mistakes made whatsoever) because nothing is done without everyone else's knowledge. 
And the nurses!  Oh, what can I say to convey to you how great they are?  Besides taking the very best care of my kids that they could, they all truly made me feel like they cared about our family as a whole.  It warms my heart still to think of the special people who took my girls under their wings.  There were times when I'd pop by the unit on my way to lunch or something, and see a nurse sitting with Sydney reading her a book, or singing to her.  At night, when Sydney was restless and unable to sleep, they'd gather her into their lap and rock, positioning all of her monitors so they could see them while Sydney watched Toy Story for the bazillionth time.  Every morning when I came to the room, she'd be freshly bathed, with a pretty bow in her hair, lips glistening with Chap-Stick.  (That hospital air gets dry, ya know!)
When we finally left the hospital, I cried.  With both girls.  Tears of relief, yes.  And tears of joy that we'd made it this far.  Of course I was terrified, too, to be taking care of these newly-transplanted kids on my own.  But you know what's funny?  A great part of those tears were because I was going to miss the people that I saw every day in that ICU.  So weird, I know.  When your child is hospitalized all you can think about is getting them well enough to leave.  And then when the time comes, you almost don't want to leave.  Almost.  It's like saying goodbye to your family members.
To this day, if we have time, we stop up to "the unit" when we have the girls in town for their checkups.  The girls are always the stars, and everyone peeks out of their rooms if they can to say hi.  It's so nice to know that even if we aren't inpatient anymore, Madi & Sydney have touched their lives somehow.  I'm glad the girls can do that.  I think they were both put on this Earth to make a great impact.  With a dream team like the one they have at Mayo, they are well on their way to a long and successful life.

Sometimes...

Sometimes, if only for a minute, I forget that I am a heart mom.
Then reality wakes me up, and it all comes flooding back. 
Sometimes, I get downright angry.  Why does my experience with motherhood have to include things like syringes and dosing information, sutures and heart function?  I see people's Facebook posts in which their children do things like ride their bike, write their name, or tie their shoes for the first time-at the age it's considered developmentally "normal" to do so.  I hear someone's three-year-old speaking full, clear sentences and watch their six-year-old pick up a chapter book and go to town.  I get mad (and let's be honest here-I get really sad, too) that things that "should" be simple for any child are not simple for either of mine.  I fume at their struggles, curse the medications that make my kids throw up or not want to eat, and seriously consider hurling my home blood pressure monitor and stethoscope across the room. 
People tell me they don't know how I do it.  Well, join the club.  I don't know how I do it either.  Perhaps the easiest way to respond to that is that #1-I really don't have a choice and #2-I guess I don't know anything different.  Maybe that makes it a bit easier.  I don't know, because both of my kids have walked eerily similar paths that don't even come close to what I once imagined parenthood entailed.  Maybe that question should be posed to people like my friend C, whose heart "baby" is not her first child.  Or her second.  I think that woman deserves a medal.  Raising five children, on her own, the youngest of whom is a heart kiddo.  How does she do it?  I imagine, though, that her answer would be very similar to what I have said more than once to that statement: What else can you do but pick yourself up and go on?
So when I start having a pity party at the sink as I am washing the latest batch of syringes, I try my best to remember this: my children are the lucky ones.  So they aren't potty trained.  So what.  So they have to take meds every day.  Yeah, that sucks.  But you know what?  They're here.  I know for a fact that there are many heart parents that don't get to hug their children, or read them a bedtime story.  Heart problems kill more children every year than all cancers combined.  We have stared the beast in the face and managed to come out the other side-at the moment.  Something that cannot be said for every family that's walked this road.
Come to think of it, I love washing syringes.