Monday, December 10, 2012

The 12 Days of Christmas: CHD Version

I haven't blogged in over a month.  Not because I haven't wanted to, but because it seems like sickness keeps rounding through my household.  We are still battling germs of some form around here today, but over the weekend we had a beautiful snowstorm that dropped over a foot of snow at our house.  It really put me in the Christmas mood, and we have been listening to Christmas carols.  Then it hit me.  The perfect blog post for today.  It took just minutes to write, but I know it's a part of everyday life for so many of us. 
I give you my very own Christmas carol,

"The 12 Days of Christmas: CHD Version".  By me, Linsey Rippy. 

On the 12th day of Christmas the heart world gave to me:
12 Blood transfusions
11 X-rays
10 Dressing changes
9 EKGs
8 O.R. hours
7 Echos scanning
6 IVs dripping
5 Vitals checks
4 Chest tubes
3 Diuretics
2 PICC ports
and a tired but very blessed soul!

This Christmas, I am forever grateful for the donor families and the brilliant medical teams that have kept my children alive.  I am also remembering those that will be spending Christmas in Heaven, and praying for peace and love for their families.


Wednesday, November 7, 2012

America

America.  The land of the free and the home of the brave cowardly.
It's day one of the post-election season and I have been attacked left and right for my choices.  I proudly supported President Obama in this election, much like four years ago.  That's my choice, a freedom that people died to achieve for me.  I don't take it lightly.  For some reason, though, some folks have it in their heads that being an American means treating people who don't think the same way they do as trash.  It disgusts me.
I have heard comments wishing that the Mayans will be right, and the world will end in December.  That people are ashamed to be American.  That the baby-killers are applauding.  All because of who is our President.  Sad, isn't it?  No one is forcing anyone to stay in this country.  If people are so ashamed to be American, or think they'd rather die than live here in this democracy, I invite them to pack their bags and turn in their passport.
Our country has lost sight of what it means to be an American.  They don't realize how lucky we are to live in a country where we have so many choices, and where our voices are heard.  Where we aren't killed because we want an education, or because we disagree with what the "powers that be" may say in our city.  We have a lot of work to do, of course.  That's what an evolving society is all about.  If we didn't we would have a citizenship that stagnated and died.  Is that what people really want?  Yikes.  Somewhere along the way, it's been forgotten that we need to have a community worldview.  To give people a hand up (not a hand out) when they are down, and to respect and love our neighbor.  We don't have to all think exactly the same way to get along.  Can you imagine if the whole world had to like the same music just to get along?  Or if the whole country had to be *shudder* Packers fans?  Diversity is what makes America special.  It's what makes us interesting.  Sadly, it is also what makes us selfish.  No one person is right.  And no one person is wrong.  What is wrong, however, is having an "every man for himself" attitude. I am not saying that we give handouts to people who sit on their butts.  (And seriously, the next person that insinuates that I am a freeloader because I voted for Obama is going to get an earful.) I am saying that people who are willing to work, to try, to make an effort, should get their fair shot.  No one in this world got where they are entirely on their own.  I, for one, know without a doubt that I would be nowhere without the generosity of others, and yes, at one point in time, the welfare system.  Instead of degrading people that fall into a slump, let's give them a boost.  Help them to help themselves.  I bet most of those that get help will turn around and lift someone else up when they are able to, and then the chain of generosity continues.  It's called paying it forward, and it's something we should all ascribe to.
I don't mean to say that the people who work hard for their money need to dole it out to people who don't work.  I was told last night that if I was a "true, hardworking and taxpaying member of society" I would resent taxes being taken from said hard-earned money.  Really?  Do I like paying taxes?  Of course not.  I don't believe that anyone does.  But those taxes pay for education, infrastructure, police and fire rescue, and so much more.  If taxes didn't pay for it, who would?  That's why even though I don't like to pay taxes, I know it's a necessary part of a democracy.  If you reap the benefits of living in a free, democratic society, you should contribute as such.  That's just common sense.
Honestly, I hope that we can get back to the American values of yesteryear.  When you worked hard and earned your keep, and helping out someone who'd fallen on times of hardship wasn't even a thought.  It was just something you did, without expecting anything in return.  My great-grandma grew up very poor, and had a Depression-era mindset to her very core.  She used everything till it was absolutely not useable anymore, and recycled things to make other things, even cutting out dolls from empty, clean, bleach bottles and outfitting them with clothes she made from scraps in her fabric basket.  If a neighbor fell sick, she'd bring them meals and bake cookies.  They shared rides to church, and spent hours and hours volunteering for various organizations.  She knew what it meant to be poor, and knew that since she was doing alright, she should pay it forward to others that weren't.  This is the attitude I hope to instill in my children.  Rich or poor, white, black, purple polka-dotted, gay, straight, man, woman, old, young, fat, skinny: We are ALL Americans.  We should all be thankful.  And if someone isn't, let me repeat:
Go somewhere else!

Tuesday, October 30, 2012

Are you someone's "yes"?

Have you ever stood by your child's bedside, watching their chest rise and fall, knowing that without the tube down her throat, it wouldn't be moving at all?
I have.
Have you listened to the beep, beep, beep of a heart monitor, fists clenched tight and on the edge of your seat, hoping it doesn't alarm again?
I have.
Or watched your child's blood being spun through an oxygenator hooked up to a network of tubes and a machine that's bigger than your own body, spinning it back to their body because their organs are unable to do it for themselves?
I have.
Have you ever jumped up every time the phone rings or a doctor walks into the room, hoping that this time, it's the news you've been waiting for?  That an organ has finally become available to save your child's life?
I have.
Or spoken with a neurologist about the brain damage that the bouts of CPR performed on your baby's tiny body have caused?
Yep, done that too.
Twice.

And I am not the only one.
All over the world, people are waiting for an organ transplant to save their life.  It could be you.  It could be your siblings, your spouse, your best friend, or, like me, your children.  That's no typo there.  I meant to say children.  As in plural.  As in both of my daughters.
I have wrestled with the grief that praying for a heart for my daughter brings.  The thought that I am in some way hoping for someone's loved one to die.  I felt that way for a very long time, until a loving and wise cardiologist pointed out something very true to me.  He took me aside and said "You have to stop kicking yourself.  This is not your fault.  You are NOT wishing for someone to die.  You are simply hoping that they will make a brave and unselfish decision in their own time of grief and desperation."  Luckily, a family in South Carolina said "Yes" to organ donation, and saved my Madi's life.  A family in Texas said "Yes" to saving Sydney. 

Are YOU an organ donor? 
You can't take your organs to Heaven.  (Or wherever you feel you may be going.)
You CAN live on.
You CAN be someone's "Yes".

BE someone's YES.  Be a donor.

Click here to register to save lives.


Tuesday, October 23, 2012

Change & Friends

Recently, I was told by someone I thought was a lifelong friend that I had "changed."  That I was "judgmental" and "only wanted to be friends with heart moms."
Not only did it hurt, but it's totally not true.  In fact, my very best friend, who I spend time with every week, is not a heart mom.  What she is, though, is understanding.
Maybe I have gotten a bit more cynical after what we've been through.  It's hard not to.  When someone complains about their money status after purposely quitting their job to get on assistance, I have a hard time listening without saying something back.  (Something like "Are you INSANE?"  or "This is why people like me can't get public assistance when it's really needed-because people like you are flooding the system.")  No one can ever say that I am not honest, that's for sure.  I surely don't have time to listen to paltry excuses.  I have no patience for whining about trivial things.  Does that make me a bad friend?  I'd like to think that it just makes me a different one.
The fact that most of my friends are heart friends isn't just coincidence.  How it came to be this way is not of my design, and there's really nothing I can do about it.  The truth of the matter is that lots of people cannot handle having a friend with complex kids unless they've been in their shoes, or have an enormous and understanding heart.  They have to realize that we won't be attending their child's birthday party at Chuck E Cheese in the middle of a pertussis epidemic.  That we can't be around them when they have "just a cold" or haven't gotten caught up on vaccines.  It truly can be a matter of life and death for my kids, and no pile of tickets and plastic prizes from the arcade is more important.  I do feel bad that we can't be as present as we may have been before my kids got sick.  I don't enjoy holding my children back from fun activities and potential friendships.  But it's a necessary evil.  We live by the guidelines set for us by the transplant team, and that's the way it has to be.  Sadly, a lot of my former friends didn't have the patience for that.  I can see where they'd get frustrated.  I admit that I am a terrible phone-call-returner.  If you spent as much time as I do on the phone (mostly with insurance companies) I bet you'd loathe it too.  I also admit that it probably is hard to deal with the constant denials of invitations sent to my family.  It would probably frustrate me too.   And so my friends, one by one, have slowly faded from my life. 
I don't expect people to "understand" transplant life completely.  Even my parents don't totally get it, because they don't live it in the capacity that we do.  I just wish that more people would take the opportunity to learn, or even to ask, and truly care, about why we have to do what we do.  Or why Madi & Sydney can't do such-and-such activity.
In the end it's their choice, and I try my hardest not to be angry.  Let's be real here, though: it really does cut deep.  People you thought would walk with you your whole life gone in a flash.  Worse than that is when they tell you that you are the one that's selfish, that you have destroyed the friendship.  That really stings.  It also infuriates me to the core.
So yeah, I guess I have changed.  I have had no choice.  My life is nowhere near where I thought it would be at this stage of the game.  But it's ok.  We've made the best damn pitcher of lemonade you ever had out of our loads of lemons that life's thrown at us.  You only have to visit with the girls for a few minutes to see that they truly are miracles, and that every restriction is worth it to hear them sing, watch them play and feel their warm hugs. 
Through it all, I have learned many important lessons.  The one that I've taken away from this about friendship is: Friends are the family you choose.  My family of friends is great.  And if it took me changing to get them in my life, well then it's worth it.
Sometimes, change is good.

Wednesday, October 17, 2012

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!

Monday, October 1, 2012

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.



Sunday, September 23, 2012

"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 liveHeart 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.






Friday, September 21, 2012

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.

Friday, August 31, 2012

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.

Tuesday, August 28, 2012

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.

Tuesday, August 21, 2012

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.

Wednesday, July 18, 2012

Love thy neighbor...

I am a baptized Catholic.  I believe in God, and pray to Him frequently.  I think God and I have gotten to a much better place in the past few years, even though my faith has been shaken more than once.
But does being a Catholic mean I have to be judgmental?  I don't think so.
You see, I am a gay rights/gay marriage supporter.  There are several people in my life that I love who are gay, and they are wonderful people who just want to be able to have a committed relationship in the eyes of the law.  For their children to be able to say "YES, my parents are married."
It's a big deal. 
I know this could potentially cause debates, and quite possibly make people feel resentful of me, but guess what?  My blog, my thoughts.  And I could honestly care less what others say on this subject, cause to me no matter what people say to try to convince me otherwise, I will stay true to what I believe.
Jesus died for ALL of us.  He loves ALL of us.  Heterosexual or homosexual, the Lord made you that way.  Period.  He also gave us the ability to think.  To make choices.  Hate is a choice.  Judgment?  Also a choice.  Who you love?  Not so much.  (If you could choose who you did or didn't have feelings for, we would all have a lot less baggage.  I mean, c'mon, who hasn't loved the totally wrong person at some point in their life?)
I hope to raise my children within an environment of love and acceptance.  I think the most important lesson that I could ever teach them is to love one another.  To be blind to color, religion, sexual preference, or what the world says your IQ is.  Why do we all have to be classified into little groups like Lego sets?  Together, we can be a stronger world.  But we have to do it as one.
I'm not naive.  I know that the citizens of Earth (or even just America, for that matter) will never join hands and be unified-that whole "We Are The World" mentality just isn't gonna happen.   In my house, though, we will be about love.  Jesus said "Come as you are" and that's what it's about in my home. 
Who am I to pass judgment?  To me, that's a direct insult to the work of the Lord.  He made us all in just the way He wanted-and I, personally, am not about to say "You know what?  You're wrong.  This guy (or girl)?  Not worthy of my love.  Or yours."
God's welcome mat is always out.  Why shouldn't mine be, too?

Sunday, July 1, 2012

Neighbors

You know, there used to be a time when neighbors knew each other.  Had cookouts together, chatted over the back fence every day, and fed half the neighborhood with each meal.  Now neighbors don't even know each other at all.  An entire town would come together to help people raise a barn, side a house, or build a deck.  It was all about community, about loving thy neighbor as thyself.  About reaching out a hand to those that needed it, without expecting a thing in return.  There wasn't the "me me me" mindset that we see so often today.
The recent healthcare reform debate has brought this mentality into sharp focus.  I cannot even tell you the number of times I have heard the phrase "Why should I have to pay for someone else?"  in the past month or so.  It's true with the healthcare reform, with taxes, with school levies.  "Why me?"  Well, why not you?  Why not reach out to those that are a little less fortunate than you, in the hopes that we can make America a better place?  Why don't more people volunteer?  Donate blood?  Vote "yes" in school levies to help with the budget?
Because the common way of thinking is "Well why should I have to do it?"  Lord knows when you yourself might need a meal provided for you, or health insurance that's guaranteed to cover your sick relative who could never afford his medication or chemotherapy or surgery or what have you without it.  People who'd literally die without insurance.  We are not promised tomorrow.  We do not know what's just around the bend, and it could just be you that needs those pints of blood.  It could be YOUR kids in a school that has to use old textbooks because yet another levy didn't pass.
The people of America need to come together.  We have heard it all our lives: "UNITED we stand, divided we FALL."  Yet so many don't live by this very simple principle.  Rich people are not guaranteed riches for life.  Insurance may run out.  You could lose your job.  Get cancer.  Need an operation.  Then you will need someone.  Perhaps many someones.  It's unfortunate that so many do not give without thinking about what they will get in return.  We need to live with a community worldview.  Your neighbor may not have the same color skin or even speak the same language, but at the end of the day we are all human beings.  We deserve to have the love and support of our fellow neighbors, even if we don't need it right at that moment.
We shouldn't have to choose between groceries and medication. 
I support the healthcare reform bill.  It's not perfect.  No bill is.  But it will help so many many people that need it the very most.  Including my two beautiful little ladies with zippers on their chests.
Complain about America all you want.  Gripe about the president, and how he has "done nothing"-a debate I will not even try to opine on  here, because it would take days.  If you don't like it here in America, well, you know how to leave.  Maybe you will find better neighbors somewhere else.  But only if you learn to be a better neighbor first.

Saturday, June 16, 2012

Testimonial

I became a mother knowing that it was never going to be a walk in the park.  That I would have moments that would make me want to scream, cry, or run away.  Maybe even throw up.  I knew I would have to "put on my big girl pants" and deal with it, just as my mom and many others have for all of time.  That doesn't mean it was always easy, nor does it mean that I always dealt with things so well.
For instance, when Madi was just a little person, (well, littler than she is now) when she would throw up I could not handle it.  Could. Not.  So Noel was the one that was on puke patrol while I was sitting in another room trying not to lose my own lunch.  Luckily, in those first years, she didn't get sick very often and I rarely had to deal with those types of things.
Then came the big heart stuff.. the strokes, the ambulance rides, the endless tests and blood draws.  The cardiac lingo kind of slipped under the rug for awhile, and I feel as though the only reason I survived those initial days after Madi was diagnosed with dilated cardiomyopathy was because I was totally and completely numb.  Shut down.  I honestly can't recall most of those early days, and that's just fine by me.
When Madi had her transplant, I cried rivers of tears.  In her room when we got to see her for the first time post-surgery, I almost passed out.
Then, Sydney got diagnosed.  And when the doctor spoke the words "Sydney's echo is not normal", I left the room.  It was the only thing I could do.  I went into the bathroom and laid there, angry at the world (and God), and overcome with nausea and dizziness.
I used to think that I was a big sissy when it came to motherhood.  When people would say that I was strong, I brushed it off like it wasn't a big deal.  Because, really, what choice did I have?  It's not like I would have ever even thought to give up and walk away-not when I knew that my kids had it in them to fight.  To live and be happy.  When you are a parent, you bear the burdens asked of you for your child.  You fight demons, slay dragons, ask questions, give medicine, and chase monsters from the closets.  Isn't that what we all do?
But today I was told something that made me think twice about my assumptions.  Today, Sydney's cardiologist-a world class cardiologist in the top 1% of his field in the nation-said to me "I think you will have a special place in Heaven; probably at the right hand of the big man Himself."  He then turned to the intern that was in the room and said "She just keeps bubbling right along!" and nodded to me.  In that moment, I realized something.  I will try not to brush off those comments anymore.  I have earned every emotional battle scar I have.
I AM strong. 
I AM a good mom.
I CAN do this.
I WILL do this.
Today, I left Sydney's appointment with a renewed belief in myself.  All it takes are some kind words to change a person's day around, and this afternoon, I was in need of a pick-me-up.
Honestly, Dr. Driscoll's words were probably the nicest thing someone's said to me in a very long time, if ever.  They couldn't have come at a better time.  It's like God was speaking to me through the doctor, and telling me that even though I have my moments, I've totally got this.  Talk about empowering.

Wednesday, June 13, 2012

Daddies & Daughters

It's been said many a time that a father is a daughter's very first love.  I myself have a great dad, and though we have had our moments, I can truly say that there really is a special bond between daddies and their daughters.
I don't know why it is, but sometimes dads are just easier to get along with.  (Though you can bet your butt that when I am sick, to this day, I still want my mom!)  In my case, I think it had something to do with the roles in our family.  My dad worked outside of the house, oftentimes putting in 60 hours a week or more.  My mom was the consummate stay at home mom who did it all-and the primary disciplinarian.  I think that made the scales tip a little more in Dad's favor-he got to be the "fun one" a lot more than Mom did.  (Sorry, Mom!)
I see it more and more with my own daughters.  When I am gone for the day and my husband is home with his girls, anything goes.  It can be two in the afternoon, and they are still in their pjs, hair untouched by any comb or barrette, bellies full of Pop-Tarts, Funyuns, and cookies.  Daddy is the one that turns on the Wii and plays RockBand, to their delight.  (He says it's for them, but we all know he really wants to play too.)  He can also be easily swayed into getting Culver's for dinner, followed up with a yummy ice cream creation from ColdStone. 
I would be wrong if I said that this wasn't head-shakingly frustrating at times.  I find myself thinking 'Hey, I get you dressed and do your hair and find educational activities and try to feed you balanced meals and, and, and..'  But the girls love every minute of it, of course.  And I do think that Madi, at the ripe old age of 6, has started to learn the fine art of getting her way, batting her super-long eyelashes at her daddy.  Which is why you will find Noel playing tea party, dressing Barbies, and painting fingernails.  (He's actually quite good at that!)  He is learning to do girls' hair, even if it does take him what seems like an eon to put Madi's hair in a ponytail.  He knows the names of all the Disney princesses, and can probably sing along with any of their movies.  Noel's world is one of sparkly pink things, clouds of glitter, and plastic high heels.
They say that when a girl marries, she looks to find someone that is like her dad.  My dad and Noel are a lot alike, but in many ways are very different.  I don't think my dad would have been caught dead in a tutu, something I have seen Noel do more than once.  (Now, if his granddaughter asked him to, that might be a different story.)  I would never have asked him to paint my nails-he wouldn't have known what to do with himself.  We did, however, sculpt many an awesome Play-Doh creation together, and don't even get me started on our puzzle-building skills.
My dad had two sons after I was born, so he got his fair share of all things boy.   Noel, though, won't get that chance, as our two daughters are it for us.  Luckily, Madi & Sydney also enjoy baseball, monster trucks, rock music, dirt, and all the stereotypical boy things too, even though they prefer frills and lace.
 Good thing Noel wears it well.

The father of a daughter is nothing but a high-class hostage. A father turns a stony face to his sons, berates them, shakes his antlers, paws the ground, snorts, runs them off into the underbrush, but when his daughter puts her arm over his shoulder and says, "Daddy, I need to ask you something," he is a pat of butter in a hot frying pan.
~ Garrison Keillor

Saturday, May 26, 2012

Patience Is...

..Standing at your child's bedside, staring at the monitors.
..Carefully maneuvering chest tubes and wires just to touch their skin.
..Whispering in their ear how brave and strong they are.
..Not being able to hold your baby for weeks on end.
..Holding your breath on extubation day, so hopeful that it will be tolerated.
..Waiting, and waiting, and waiting for her to say something.  Anything.  And then, when she does, it's...

...wait for it...


...wait for it.. (see, I am teaching you patience too!)


"WOODY!!  WOODY WOODY WOODY!"
I could be offended, but then again, who can compete with this guy?

Monday, May 14, 2012

Scars

I never thought much about scars a few years ago.  They were what they were-reminders of bike rides gone wrong, sword fights with brothers, and run-ins with furniture.
They are not "just" scars to me anymore.
When I look at my daughters' chests, there is a thin line running down the center.  Madi's, with almost three years of healing gone by, is a faint white.  Sydney's of course, being only 3 weeks old, isn't even at the point where you would call it a scar.  It's still a healing incision.
These tiny thin lines speak such volumes to me.
They say "Look at what I have survived.  I am a warrior."  They act as reminders that life is something to be treasured, and we should never take any piece of it for granted.  It's so cliche but then again the best cliches are centered in truth.
I hope that when they are older, Madi & Sydney are not ashamed of their "zippers."  That they know that they earned every mark because of their strength, determination, and their will to live.  I may be their mother, and therefore biased, but I do believe my girls are perhaps the strongest kids on the planet.  No child should ever have to go through what they have, but they have come out (so far anyway) on the other side of it having taught many of us a great lesson.  More than one, for that matter.
I have never thought of motherhood as anything less than a blessing.  Yes, at times it has been hard to remember.  I have often had moments where I questioned my ability to be a good parent.
When the bad days come, and they do, where the kids cannot seem to leave each other alone, and there are toys all over the floor; when Madi is mouthy and Sydney is whiny, when neither child's ears are open to what I have to say, it just takes one quick glance to make me think differently.
I catch a faint white line peeking out from Madi's shirt collar.
I stop what I am doing, for just one minute, and touch that scar.
And thank God that it's there.

Wednesday, April 11, 2012

Evolving & Adapting

I was once friends with a wonderful woman.  "L" was funny, gregarious, and loving to a fault. 
I lived with L and her family, which included her two children, for a brief moment in my life and it has affected me more deeply than I ever would have thought.
You see, we were inseparable.  We did everything together, and I loved her children with a fierceness I didn't know I had in me. 
And then I had children.  And my child got sick.
All of a sudden, the friendship started to suffer.  We drifted apart, and I thought it was just a phase.  I never imagined that it would come to the head that it did, and implode in my face. 
When you have a kid that has special needs, it stands to reason that there are adaptations that have to be made above and beyond "normal" child-rearing.  I guess, though, that L could not handle that.  She didn't realize how severe things really were, and thought that my life revolved "too much" around the challenges I faced as the mother of a medically fragile child.  Of course, I took great offense to this, and things quickly got nasty.
Now that I have yet another medically fragile child, I know that I did the right thing in standing my ground.  In no way did I cause my childrens' problems, and I know that deep in my heart.  It doesn't mean that I do not have my moments of mommy guilt, and it surely doesn't mean that I don't have pity parties for myself now and again.  (More frequently lately, I have to admit.)  But I still miss my friend.  I don't get to see her children grow and blossom, don't get to be there when they receive their diplomas.  There are no more inside jokes and shared remembrances-they exist only in my memory.  And that leaves an ache behind.
I am so very grateful for all the wonderful friends that I have.  They pick me up when I fall, hand me a piece of chocolate (cause what good friend wouldn't have chocolate just for this occasion?) and tell me to get over it and get on with it.  And I do.  I would like to think that I do the same for them.  Thankfully, I also have friends with the bravery and tenacity to say if I am being a little self-absorbed, and they snap me out of it.
When you have a friend who has a child that's "different", please take heed: we do want to know what goes on in your life.  We do want to hear about your problems, your challenges, and your triumphs.  We love to celebrate with you, cry with you, and most of all to laugh with you.  We want you to understand that even though things are different in ways, that doesn't mean that we can't adjust and still be the same friends that we once were.  It just takes a bit of an effort.
If you have a friend that's going through some tough stuff, make the effort.  Listen.  Be there.  And then tell her about how you locked yourself out of your car this morning, how you think your mother-in-law is the devil in disguise, and how your daughter won't stop wearing her ballet costumes to school.  We want to hear it.  Trust me.  When so much is beyond our control, old friendships become a stabilizing point.  An even keel in a sea of turmoil.  Our good friends remember who we are deep down inside, even when we ourselves forget.
It may be hard.  You may get frustrated.  You may not want to ever hear about another blood draw, hospitalization, or medication change again.  Listen anyway.  Be there anyway.  You never know when it might be you that ends up in a place in life that you never imagined. 
And in that moment, you will find yourself again.  You have your friend to remind you.



PS-L, if you read this, and you may, just know this: I still remember the you that's deep inside.  And that L is sorely missed.

Tuesday, April 3, 2012

Organ Donation: Myths & Facts

Did you know that April is Organ Donation Awareness Month?
Most people don't. 
It's no secret that I am an organ donation advocate, being as my own daughter Madi was saved by organ donation.  But what about those that are on the fence?  There are a lot of myths and misconceptions about organ donation and the process that brings about transplantation, and they tend to lead people away from consenting to be a donor.  We already have far too few organs available for the people that need them, so it's my hope to bring a bit of awareness to all of you, thereby helping you to realize what a wonderful, selfless, and beautiful decision organ donation is. 
Please take the time to read the following information, and BECOME A DONOR!  ONE donor can save some 60 lives!  What a great legacy to leave behind.

"Don't take your organs to Heaven; Heaven knows we need them here."




Myth #1:  If I have checked the donor box on my license and I am rushed to the hospital for something, the docs will not try to save me so that they can use my organs.

Truth:  Any doctor's number one priority is to preserve life.  Medical personnel will do everything possible to save anyone that enters their facility.  They do not view organ donors as a means to procure an organ, and in fact do not even know if someone is a donor while trying to treat the person and save their life.

Myth #2: Only hearts, livers and kidneys can be transplanted.

Truth: Needed organs include the heart, kidneys, pancreas, lungs, liver and intestines. Tissue that can be donated include the eyes, skin, bone, heart valves and tendons.

Myth #3: A donor card/notification on my driver's license is all I need to be a donor.

Truth:  In most states, hospitals can legally proceed with organ, eye or tissue donation, without consent from next of kin, if you have a driver's license with an "organ donor" designation or have signed up with an organ donor registry. However, it's important to talk to your family about your decision to donate LIFE so they are aware of your wishes and will feel comfortable honoring them.

Myth #4: Celebrity or financial status determines placement on the transplant list, so ordinary people don't get the organs that they need.

Truth:  When you are on the transplant waiting list for a donor organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information.

Myth #5: There's a danger of being heavily drugged and then waking up to find you are missing a kidney for a black market transplant.

Truth: This tale has been widely circulated over the Internet. There is absolutely no evidence of such activity ever occurring in the U.S. While the tale may sound credible, it has no basis in the reality of organ transplantation. Many people who hear the myth probably dismiss it, but it is possible that some believe it and decide against organ donation out of needless fear.

Myth #6: My religion prohibits organ donation.

Truth: All major religions approve of organ and tissue donation and consider it an act of charity.

Myth #7: I am too old to be a donor.

Truth: People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissue can be donated.



All information provided by UNOS (United Network for Organ Sharing) and can be found at www.unos.org

Saturday, March 24, 2012

A Birthday Letter to Sydney

My beautiful baby girl, Sydney Jo:

Today you are three years old.  I can hardly believe it.
My gorgeous girl, where does the time go?
This year has been a rough one for us, in finding out that your heart is sick like Madi's was.  You are such a trooper, though, and nothing is holding you back at all.  I pray every day that your heart function will improve and that you can continue to live as normal a life as possible.
You are making such leaps and bounds with your vocab!  All your hard work with your teachers is really paying off, and I couldn't be more proud.  We will show everyone yet that us Rippy girls are fighters.
It's been so busy in our lives lately-you got to see Sesame Street Live again this winter, which you loved.  We were also fortunate enough to get to take you and your sister to see "The Lorax" in the movie theater a couple weeks ago.  It was both of you girls' first time at the theater, and we all had a blast.  Hopefully that's something that we can continue to do, as well as other events through HopeKids.
The weather has been beautiful here as of late-we even had a week of 80 degree temps in March!  You, Madi, and Mama have been having a great time outside.  You still love to dig in dirt and get messy every chance you get.  You also love to take walks and point out birds and puppies along the way.  On days that it's icky outside you like to watch "Mickey Mouse Clubhouse" or the movie "Tangled." 
Sydney, you have blessed my life in more ways than you can ever imagine.  I hope you know how wonderful and special you are to me.  No matter how old you get, you will always be my baby.

Love, Mama

Sunday, February 26, 2012

Sh!t Heart Moms Say

A new trend has hit the internet.  Actors and actresses on YouTube doing parodies of stereotypical things that a certain gender/race/group say or do.  And let me tell you, as un-PC as they can be, I have found them to be hilarious.  My personal favorite is Shit Fat Girls Say.  It cracks me up every time, most likely because let's face it, I am not the skinniest person to ever walk the earth.  And I may or may not have said some of the things that are portrayed in the video.  You can watch it here but be warned, there are parts that are not for little ears.
After watching that video, and some of its hilarious counterparts-Sh!t Extreme Couponers Say, Sh!t Girls Say, and more-I decided that there should be one for us heart moms out there.  Being that there's no way on God's green Earth that I am going to be filming myself anytime soon, I thought I would just post some of the things that are said frequently in our little world that may not make sense to others, but cause that "aha" moment for a heart parent.  Feel free to contribute if you think I have missed some!  :)

"Are her lips bluer than normal to you?"
"Anyone know of any way to put extra calories in a diet without using olive oil in everything?"
"She was satting in the low-80s today, so I was a bit concerned."
"Can you believe how PINK her toes are?"

"Well, her ejection fraction is 25% but you could never tell by looking at her."
"I HATE when people tell me that she's 'repaired'.. she has freakin man-made material in her chest!"

"Please pray for pee!"
"Anyone out there have a trick to getting your two year old to sit through a blood pressure reading?"
"During her speech therapy today, she actually said a full sentence!"
"Ugh.  So tired of oral aversions."
"Yep.  We have pneumonia/RSV.  Again."

"Oh my gosh, we have made it 6 months without seeing the inside of Children's!"
"Yay!  They featured someone with HLHS on Grey's Anatomy tonight!  But they totally handled it wrong.."
"Well she has a moderate tricuspid leak, but most of us do, so whatever."
"I cannot wait till he gets off this sildenafil.  The 'unfortunate side effects' are a little weird in a three-year-old."
"Another stay at Hotel Amplatz.  (Hotel Children's, etc.)  Can someone bring me some food?"
"I don't want to say the h word yet, but.. we may get to go home soon!"
"I wish I could put her in a bubble so she could avoid germs all the time."
"Woo hoo! Extubation!"

"He's such a hard stick that they are keeping the IV in till they are sure he will stop dropping his pressures."
"Three a.m. and I am doing laundry.  Damn g tube leaked all over again."
"What's his INR?"
"Chest tube removal.. sounds like the perfect time for me to leave the room."
"Do they HAVE to check vitals every 4 hours? How do they expect us to sleep around here?"
"I swear I should a have a freaking nursing degree by now."


Sometimes, it's good to know you're not alone.

Tuesday, February 14, 2012

The Faces of CHD Part Fourteen: Torn between two loves

Today is CHD Awareness Day.
It's Heart Day.
And my heart is heavy.
All these angel babies gone way too soon.  All these parents grieving, dealing with their own broken hearts. 
Instead of posting a heart child's story today, I am honoring the angels.  I hope you will take the time to say a prayer for them, and for their families.

"It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born.
One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit.
She is still not swayed on this idea. So Jesus kneels down, and says "how about if you leave half of your heart here with me and take the other half with you, will that be okay". The angel smiles and says "I guess that will work".
But the little angel is still a little scared. She asks "will I be okay with only half of my heart?" Jesus replies, "of course you will, I have other angels there that will help out, and you will be fine."
Then Jesus gives the angel more details about his plan, he says "when you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday."
"And when its time to come back to heaven, I will make your heart whole again.
Always remember that you are not broken, just torn between two loves"

CHDs are ugly.  Scary.  Sad.  Destructive.  Selfish.  Non-discriminating.
This is why we fight.
For Tru, Nathan, Pierce, Ewan, Easton, David, Parker, Olivia, Hazel, Kayden, Lucy, Tommy, Joshua, Amayah, Lorenzo and Andrew.  For all the angels.  And for their families, torn between two loves.

Monday, February 13, 2012

The Faces of CHD Part Thirteen: HAILEY



Story taken in part from the U of M website/Jennifer Helstrom, Hailey's mom.

On March 25, 2010, Jennifer went into labor. As Jennifer and her (now ex) husband, Scott, drove to the hospital, labor progressed much quicker than expected. Scott was speeding when a police officer pulled him over. A few minutes later, that police officer delivered Baby Hailey — along County Road 5 in Cambridge, Minn. — in the back of the family van.

Jen immediately noticed that Hailey’s lips were blue and were concerned about what impact the 35-degree weather was having on her newborn. An ambulance transported Jennifer and Hailey the rest of the way to the hospital. Hailey was admitted to the hospital’s neonatal intensive care unit due to respiratory distress. A week later, Jennifer and Scott learned that their baby’s lips were not blue from the cold but because she had truncus arteriosus, a serious congenital-heart defect.

When Hailey was two weeks old, doctors implanted a donor heart valve and at three weeks, added a pacemaker. At four months, Hailey’s doctors implanted a new pacemaker and referred her to University of Minnesota Amplatz Children’s Hospital for specialized care. Hailey’s condition worsened — her heart was failing due to underlying dilated cardiomyopathy (decreased heart function because of a weakened and enlarged heart) that had evolved separate from the truncus arteriosus. Hailey would turn blue during normal infant activities such as eating. In September 2010, she was added to the transplant list.

Two weeks later, Hailey was comfortably asleep in Jennifer’s arms when the phone rang. “Something made me get up,” Jennifer recalled. “I took a deep breath and answered. It was our transplant coordinator, Tracy Demars. She said, ‘Jenny, we have a beautiful little heart for Miss Hailey.’ I remember those gentle, kind words like it was yesterday.” Jennifer then embarked on one of the most nerve-wracking drives of her life.
Hailey was able to get a heart quickly due to her age, blood type and size. The transplant however, was higher risk due to Hailey’s weight of only 5.5 kilograms (12 pounds). The surgery went well and there were no complications.
Post-transplant

Hailey was discharged two weeks after the transplant and has shown no signs of rejection.

Her cardiologist, Rebecca Ameduri, M.D., says that Hailey’s prognosis is very good since infants have the best long-term transplant outcomes. Since the transplant, Hailey has begun talking, and is eating well and growing. She requires a strict regimen of anti-rejection medications, but Jenny feels so blessed to have her, and is extremely thankful for the donor family that gave Hailey another shot at life.
Hailey & mom, Jen, Christmas 2011

Sunday, February 12, 2012

The Faces of CHD Part Twelve: LUCY

Written by Melissa, Lucy's mom
 
We found out at my 20 week ultrasound that Lucy had a heart defect. My OB noticed it on the ultrasound so she sent us to a cardiologist in St. Cloud who did an echo and confirmed that Lucy had Tricuspid Atresia with a hypo plastic right heart (read about that here). We had then started going to the U of M to see the fetal cardiologists. They had a plan for us to be induced one week early so that they could have the doctors on staff that Lucy would need. Lucy was born September 12, 2011 at 7:49 she was 10 lbs 5oz and 20.5 inches. It was a long labor that ended in a c-section due to her size.
 
Lucy was brought to the NICU immediately so that they could do an echo to confirm what they saw prenatally. Things were as they believed. They waited a couple of days for her PDA to close to see how her heart would circulate her blood. Things seems fairly well so they decided they could do the Rashkind procedure (A cardiologist threads a catheter through the belly button or a vein in the leg, to the heart, and creates a hole between the upper chambers. The hole allows oxygenated blood from the left side of the heart and deoxygenated blood from the right side to mix, increasing the amount of oxygen in the blood pumped to the body) instead of having to put in a shunt. This was a good thing since that meant not having to open her chest. After a few days she seemed to be doing very well. She was eating like she should and her oxygen was in the high 80's to low 90's which was wonderful. They had moved us to another room because they had planned on sending us home.
 
Lucy started to not eat as much which they thought was ok due to what she had gone through with the Rashkind procedure. They told us she could not go home until she ate a certain amount every 4 hours. On the 20th we had gone home for the night when we got a call at 4am that her oxygen was dropping dramatically into the 40%. They were giving her meds to keep it up. They ended up putting in a central pick line to get meds directly to her heart. This took hours because they could not get it in they finally had to take her to radiology to get it done. After another day and no improvements they move her to the PICU so they could watch her better. On the 22nd her pressures started to drop dramatically. It was like a circus in her room trying to give her meds to keep it up. At about 11pm that night the surgeon came in saying our only option was ECMO and it was very risking because she was in heart failure and very sick with only half of a heart. We signed the papers and we watched them take her away not knowing if she would make it back. She got back around 1 am and things went well. The doctors were not sure why she went into heart failure. We had multiple doctors coming and going looking at her and doing tests. They sent her tests to the children's hospital in Cincinnati for their input as to what they thought may be wrong. They were not sure if it was cardiomyopathy or myocarditis. Lucy was on ECMO for about a week and things were not really changing they decided to try the Berlin heart which would be another risky procedure due to how sick she was and that she was on ECMO. They put in the Berlin heart and things went well during the surgery but she only had it for less then a day. Since she had only half a heart they had to also put a shunt in for the Berlin heart to work and place it in differently then they would normally and it did not work for her. Lucy went back onto ECMO. They told us she would have to be put on the transplant list immediately as a 1A recipient in order to have any chance but even with a transplant they told us she had a very low percentage that should would make it thorough because she was so sick. At this point Lucy still had the doctors unsure as to what was wrong with the left side of her heart. Lucy went on the transplant list September 28th. They had attempted to close her chest on the 6th which would be the first time since the 22nd. They did get her chest closed but she was bleeding more then she ever had. They did not know if she would make it through the night. At 1pm our surgeon Dr. Bryant called me to say they had a heart!! We were so excited but they told us getting her through this was not going to be easy. She got her new heart October 7th. She made it through the surgery great but when they tried to taking her off of bypass her pressures kept dropping again. They tried 3 different times for at least 4 hours and finally they had to put her back on ECMO. They believe that the heart was good but was on the small side and Lucy was so sick that it could not catch up. They kept her on ECMO for a week then they tried taking her off and the first time it did not work so they tried again two days later and she was able to do it on her own. Now the problem was her kidneys took a hit while being on bypass so she was full of fluid and was not peeing so they put her on dialysis. So they had to put her through another procedure to start the dialysis. They would fill her with the fluid and let it sit for 30 min then drain the fluid. Every time they would empty the fluid her pressures would drop. So they had to stop the dialysis for a couple of days and try it again. Once they started again it worked better and did not seem as hard on her. They were getting rid of some of the fluid but still not enough to close her chest. On October 19th they told us her liver tests were coming back extremely elevated so they were going to be watching it more closely. So now it was her heart, kidney's, and liver. October 20th I was waiting for the tests to come back to see if it had gotten better. One test stayed the same and one was a little better. This was also my husband's and mine 10th anniversary so after we got the results back we decided to go out to eat. When we got back Lucy was doing fairly well just going through her dialysis. She was starting to have some urine too so things seem to be looking good. But at about 10:15 when they were draining the fluid her pressures dropped as they had been but they always went back up right away. This time they dropped and did not seem to be going up as normal. They gave her meds and some blood products and it went back up for about a second but i stood there watching the monitors as her pressure suddenly dropped in half and never went back up. They hit they code blue and the room instantly filled up. They worked on he for about 45 min and she never came back. The surgeon told us that they could try ECMO one more time but he gave it about a 1% chance to work since she had already been on it 3 times and her chest had been open for over 4 weeks so anything we did not would be for us and not for Lucy anymore. He also told us that because her oxygen had dropped so low for a long time that she may have brain damage if she were to even make it through. My husband wanted to be the one to tell the nurses to stop so we went back into the room and he asked them to all stop. She never came back to us. It was the hardest thing we ever had to do.. we always knew this could happen but always before she was having another procedure not just what seemed out of the blue. I miss her so much. We only were able to hold her that first week but she was able to hold our hand and she would squeeze our hand every time we held it. She would always open her eyes and move her head when she heard me it was wonderful. The nurses loved her and I think the whole staff was amazed at her strength and how long she actually hung on. She was a fighter!! 
 
They did not find out what was wrong with her native heart till after it was removed for the transplant. They discovered it was Hypertrophic cardiomyopathy (. Due to Lucy being born with only half a heart it put to much pressure on the other side which caused the heart failure to progress so quickly. 
I miss her and love her so much but am thankful for the time we had and glad she no longer is suffering.
 

Saturday, February 11, 2012

The Faces of CHD Part Eleven: GIANNA

Written by her mom, Margit
 
When we found out in December 2009 we were expecting twins, we were beyond ecstatic, yet hesitant.  We lost one of our twins (Gabriel) at 27 weeks in utero due to Trisomy 18 in our first pregnancy, but were blessed with Isabella.  We were so worried going up to the 20 week ultrasound.  I remember the confirmation that it was two girls and everything was perfect.  Wow, nothing wrong, that is amazing I thought.  Then at our 24 week ultrasound, the tech spent a lot of time on Baby A's heart.  I had flashbacks to the amount of time they spent on Gabriel's heart.  Tom assured me it was fine.  I asked what was wrong.  The tech said I think she might have Transposition of the Great Arteries.  I was heart broken, I couldn't lose another child.  She said it was "a good heart defect" to have because the outcome after surgery is favorable.  That didn't help me much, but I knew she was trying to help me stay positive.  We then met with the perinatologist and cardiologist who confirmed her TGA.
Thank God, I carried the twins to 38 weeks.  This gave Gianna the best chance for surgery since she was able to grow more.  Gianna and Reagan were born 8/18/2010.  Gianna needed a procedure, balloon septosomy, within 4 hours of birth to allow more oxygenated blood to circulate. 
 
She had difficult heart anatomy with her coronary arteries being inverted, so she had two more heart cath procedures  to ensure they had her anatomy correct before her open heart surgery.  She had her open heart surgery to correct the inverted coronary arteries and to correct her aorta and pulmonary artery, which had grown in the wrong spot. Gianna did amazing, but had a lot of bleeding after her surgery.  
 
Our surgeon told us it was one of his toughest surgeries ever for him.  She had a lot of swelling in her tiny little body, and her chest was left open for 4 days.  Her stay was on the very long end for this type of surgery.  She had issues with feeding, gaining weight, and retaining water.  After 5 weeks to the day, Gianna was able to come home to be with her family.  She was in the less than 3rd percentile for weight height when she came home, and 80% tube fed.  Within 6 weeks, she was 100% bottle fed and by 6 months old she had moved up to the 10-25 percentile for weight and height.  She still has a VSD  and  narrowing of her pulmonary artery, and may need surgery in the future, but we know she is a fighter!  I thank God every day for the University of MN Amplatz Children's Hospital, Dr St. Louis (her surgeon) and the wonderful staff and volunteers.    
 
Gianna is a miracle.  She is my angel.  Her name means God is gracious.  She truly is a gift from God and shines on everyone she meets!

Friday, February 10, 2012

The Faces of CHD Part Ten: NATHAN

Nathan's mom, Michelle, knew that the baby she was carrying had a heart problem.  She just didn't know what kind yet.  As she waited for the week to go by until her next OB appointment, when she would find out just what was wrong with her little guy, she went into labor and had Nathan at 29 weeks.  It was December 19th, 2008, and it was the middle of a blizzard.  Mayo One, the lifeflight helicopter used to transport patients, was grounded.  In the ambulance on the way from one hospital to the children's hospital at St. Mary's in Rochester, MN, her pediatrician and OB (who were along for the ride) told her that Nathan had Hypoplastic Left Heart Syndrome-that his left ventricle was pretty much non-existant.  The family was told that he would need surgery as soon as he hit 5 pounds, and that was if they chose to try to save him.  Otherwise, they could do hospice care and wait for him to slip away.
Michelle, of course, knew she had to do whatever it took to give her beautiful boy the best chance she could.

On March 13, 2008, Nathan was not quite 5 pounds but he needed to have surgery.  He had the first of his three planned surgeries that day and did well.  (Read about the three-stage surgery used for children with HLHS here ).  In July of the same year, Nathan was once again a very sick little boy.  His kidneys and liver were not doing so well, and it was found that his shunt had closed.  Since he was so tiny and so fragile, a catheter procedure couldn't be done to put in a new shunt, and Nathan had to undergo another open heart surgery to replace the closed shunt.

At the end of October of 2009, Nathan went in to have his second stage surgery, the Glenn.  He did very well, and was at home within 2 weeks.  After being home for a week, it was discovered that he had a chylothorax, a leak in his lymphatic system that was going into his pleural cavity.  (Chylothorax info in detail), so he spent another two weeks inpatient.  Nathan was the star of the cardiac ward during those two weeks.  In spite of his chest drainage tube, he was having a good old time with wagon rides and playing with all the staff.



In late November of 2011, Nathan went to St. Mary's for what was to be the last of his planned surgeries, the Fontan.  While he flew through the surgery itself, the next four days were not so great.  His body was so traumatized and tired that he needed to be placed on ECMO to get some rest.  Just as he was getting hooked up to ECMO, he coded for four minutes.  They were able to bring him back, and in the next three days, Nathan went back to the OR four times to have more heart surgeries.  At some point during all the calamity, he developed a large blood clot in his leg, and the family was told that when he was recovered from his heart surgery, a part of his leg/foot would need to be amputated.
After coming off of ECMO, Nathan's kidneys didn't want to function, so he was placed on dialysis.
Late in the evening of January 9th, 2012, Nathan's pressures dropped considerably and he took a turn for the worse.  It was found that he had grave intestinal bleeding, and it was inoperable due to complications with dialysis and kidney function.  Rather than prolong his suffering, the family chose to let Nathan go.
Nathan and family w/Santa 2011
Nathan & Mama just days before he went to Heaven

He passed away peacefully in his mom's arms on January 10th, 2012, in the wee hours of the morning.
Today Nathan has been gone for a month.  His family does their best to get through, and they know that Heaven is a beautiful place.  But it doesn't change the fact that he is not here on Earth with his family.
CHDs are monsters.  They affect not only a heart, but a body's whole operating system.  They are so much more than "just" a heart problem.  Hopefully hearing Nathan's story (and all the others featured on this blog) will help people to understand just how much is needed for research and funding.  We need to fight these monsters.
Today, please take a moment to pray for Nathan and his family.  And then, do something that benefits CHD awareness.  For all the children in pain, for their families, for the kids gone too soon. 
For Nathan.
Rest in peace, sweet boy.