Thursday, March 31, 2011

To vaccinate or not to vaccinate?: There is NO question.

Today while Madi's teacher was here, we got on the subject of school.  Madi will be entering a school-readiness preschool program in the fall if all continues to go well with her medication changes and she has had no rejection episodes.  (How did she get to be five friggin years old already?!?!  Yeesh!)
Like any other parent out there, I have my concerns.  Will she miss me?  How will I do with her away from me?  Will she make friends?  Will she finally have tamed her urge to pick her nose? (Dear Lord, please!)
Most importantly, though, I have serious worries about things that most parents never think twice about.  It all comes down to vaccines.
I know, I know.  It's a heated debate no matter who you talk to about the issue.  I, for one, see no harm in vaccines at all-in fact the opposite is true.  Not vaccinating is what's so dangerous.  This year in Minnesota, there have been twelve reported cases of measles.  Twelve.  That's unacceptable.  Now there are whispers of polio showing back up on the scene.  What next?  These are all almost completely preventable diseases.  Why risk your child getting something that could seriously sicken them, put them in the hospital, cause them brain damage, or even kill them?  As a mother who has paced the halls of the PICU till there was practically a groove worn in the floor, take it from me: you do not want your child to have to be there.  For any reason.
In Madi's case, it's vitally important that the people around her are up to date on her vaccines.  Due to her medications, her immune system is compromised.  This is to prevent rejection of her heart, and while it poses some risks, it's necessary for her to live the best life she can live.  Because of this, she cannot receive any vaccinations that are live.  This means that she cannot get the chicken pox vaccine, or the second dose of MMR (Measles, Mumps and Rubella) that most kids have gotten.  We will be forced to rely on what we call "community immunity."  In essence what that means is we are counting on others around Madi to be able to ward off the disease; thereby protecting Madi from something that her body is not protected from.  It's like when a herd of elephants gets attacked and all the big elephants surround the little ones. 
Transplant is a serious change in how we live our lives.  Something that may just make you or your kids have a simple runny nose can kill her-and a lot easier than some may think.  Somehow, someway, we have to figure out a way to ensure that when Madi is in school, she will be in a classroom where all children are up to date on all vaccinations.  I am not sure how that will work due to all the privacy laws out there, but I am sure the docs from the Mayo Clinic will have to be on board somehow.  To ease other parents' minds, and mine.
When Madi does go to school, I am sure I will be dubbed "That Mom."  As in, "that mom" who is always asking when the last time your kids were sick was, and breaking out the hand sanitizer.  Yep.  That'll be me.  But it's a duty I am fully ready for. 
We have fought too damn hard to get where we are today, and there's no way I am going to let anything stop me now.  Please read up on vaccinations at the CDC's website here and get educated before making any rash decisions on whether or not to get your kids immunized.
You will be equipping your child for the battle against an army of ugly diseases.  Offering them the best protection you can.  You will also be protecting those out there, like Madi, who don't have a choice.  And for that, we say thank you.

Saturday, March 26, 2011

Decorating NONsense

I am beginning to realize why tornadoes so love to flatten trailer parks.  I live in a very nice mobile home in a fairly big park.  It is a nice park-there are no cars up on bricks or lawnmower parts strewn across the yard.
However, if you take a walk through where I live you are bound to see some interesting things.  In fact, I don't even have to leave my living room to witness the oddities.
Case in point: the neighbors have a hole on the side of their house.  A chickadee flies in and out of it every single day, many times a day. 
What the hell?!?  If some random bird flew through a flippin hole in my siding and into my house, I would not be nonchalant about it.
I thought that just for giggles, I would give you a glimpse into my little corner of the world so you could laugh along with me at the things I see.  Here goes nothin!
*Christmas lights on nightly.  Still.  It's almost April.
*Plastic flowers in outdoor planters.  Yep, plastic.
*Strobe-like lights in the driveway.
*In one yard: a ceramic lion painted bright gold, an ancient limo, a psychedelic-colored VW, and two statues of dogs lifting their legs on a rock.
*A grill entirely encased in tin foil.  It looks like someone trying to build a homemade rocket, but they do actually cook on it.
*All forms of plastic and ceramic geese, donkeys, and other animals.
*"Windchimes" made of old CDs.
That is just a small sampling, and it's not even springtime yet.  I cringe to see what will crop up once the snow melts and people get outside.  I know that each person has their own style and sense of outdoor decor.  I truly get that.  But what is it about living in a trailer park that makes people invent such odd ways of accenting their little yards?  I mean, I am all for recycling and upcycling and using what you have.  But there's already such a stigma surrounding living in a trailer park, so why make it worse? 
Myself, I prefer soft green grass, rosebushes and a hanging basket or two.  I save the craziness for inside, and the only "trailer trash" we have here is what's in the garbage can.

Thursday, March 24, 2011

Happy Birthday Sydney Jo!

I cannot believe my baby girl is two years old.  Time really does fly!
Two years ago, at 9:34am, my Sydney came into this world.  Weighing in at 7lbs 12 oz she was quite a bit bigger than Madi had been as a newborn and she was bright-eyed and ready to eat.  It was such a relief to meet my little pumpkin and finally be able to hold her and kiss her and all the fun things that go along with having a new baby.
Sydney has always been such a laid-back kid.  She is so content with everything in life and always has a smile on her face.  I think we can all learn a lesson from Sydney.. let's be happy with what we have and try to smile every single day-even if it's for a teeny tiny reason-instead of griping about the little things.  No matter what life has thrown our way, Sydney has always rolled with the punches and been a good example for how we all should be. 
I have a lot of guilt about the early days of her life.  Madi had just gotten out of the hospital yet again when she was born, and shortly thereafter was when Madi got her second ambulance ride, followed by pacemaker implantation and then the road to transplant started.  I pretty much moved into Children's and subsequently St. Mary's hospital and in so doing I missed out on a lot of Sydney's babyhood.  I knew she was just fine where she was but it hurt to not be a part of her everyday life.. to hold her and snuggle before bed, rock with her and feed her, and just be there for her.  Now she's two, and snuggling is not usually on the list of preferred activities for her.  Ha ha.  But I steal the kisses and hugs when I can and truly relish every one of them.  If there's one thing I have learned from being a mom, it's that time goes by all too fast and you should treasure your children.  They are our greatest accomplishments, biggest gifts from God, and the best blessings you could ever have.
My silly, sweet, beautiful little girl, Mommy loves you more than you will ever know.  Happy 2nd Birthday!

Thursday, March 17, 2011

HLHS: NOT a death sentence!

Tonight's episode of Private Practice, a show that I normally watch every week, disturbed me to the very core.  Don't get me wrong, I don't look to any tv show for "advice" on anything.  I find all the breakups, makeups and hookups laughable and unrealistic.  But I watch it anyway.  Guilty pleasure, I guess.
No longer.  I am more disgusted than I can even put into words.  Tonight's story line was about a couple who had gone through IVF and had had miscarriages.  This baby, their "last shot" with the IVF, would be born with Hypoplastic Left Heart Syndrome, also known as HLHS. (What is HLHS, anyway?) The couple decided that, because the baby was "going to die anyway" they wanted the clinic to harvest this baby's ovaries to produce eggs so that the mom and dad could use donor sperm to fertilize them.  They didn't even want to meet their daughter, since "she's not going to live more than 24 hours" and "HLHS is a death sentence."
It literally made me sick to my stomach to hear this.  I have several friends whose children have HLHS and are living with it now.  They have undergone open-heart surgeries and don't always have the easiest time in life, but they have GOOD lives.  They do most of the things normal kids do.  They run, play, climb and get into trouble.  Ask any of their parents and they would most surely say that they never regret their child's life.  Never.  Sure, it's stressful to have a kid with a significant defect, whether it's heart-related or not.  But does that mean we just give up on them and walk away?  Pretend they never existed?
Where's the message of hope?  I think that's the part that is saddest.  Nowhere during the show was any information given about the options you do have when you have a child with HLHS.  Yes, it is 100% fatal.  If it's not treated.  That's the biggie there.  There are options, and there is hope.
This is why Congenital Heart Defects need further research.  This is why we spread awareness.  Too many out there are misinformed or under-informed. 
So to the writers of Private Practice, I say shame on you.  For putting fear into the hearts of parents out there who may be expecting a baby with HLHS.  For pretty much saying that you should just give up, because your child will die anyway.  For not giving any hope to these precious children. 
I have hope.  For kids like Eddie and Cameron.  Kids that I know and love, whose bright smiles and shining faces would make you change your mind about HLHS in a minute.  They may have "half a heart" but they are full of life.

Is three really a crowd?

I think I have baby fever.
Sydney is going to be two years old in exactly a week from today.  Madi will be 5 in just a couple of weeks.  I have tons of friends that are having babies.  It's started that thought process in me-should we have one more?
There are, of course, many reasons for and against it.  We have had a genetic panel done on Madi.  To the best of the docs' knowledge, we do not carry a gene for cardiomyopathy.  However, who knows what genes are out there that are as yet undiscovered?  That's the fear that gets to me in the darkest hours.  What if Sydney got it, too?  How would I handle that?  Do I even risk having another child after what we went through?
I know that there are a lot of people out there that say that God will provide and He wants us to go forth and multiply.  But I can't help my thinking that God also doesn't want innocent children to suffer.  I am not trying to start a religious debate here, just simply stating what's in my heart.  When I search deep inside myself I know that there probably is not a genetic component to Madi's heart disease.  I also know, when I am being totally honest with myself, that there is a part of me that would love to have another baby.  Just one more.  Not because we want to try for a boy, although I would love to have a son, but because I have this feeling that I was meant to be a mom of three children.
Our house has three bedrooms, so that would mean that eventually two little ones would have to bunk up together.  No big deal-plenty of people share rooms.  We would make it work.  I know we could.  Despite the fact that my kids test my patience and make me want to pull out my hair sometimes, the love I have for them knows no bounds.  If everyone based their decision to have more kids on their other childrens' behaviors, we would probably all be only children.  There are plenty of people out there who make it on less than we have.  I am nothing if not bargain-savvy, and I know how to stretch a buck.  We could do this.  But should we?
Some say three's a crowd, but I am not so sure.

Monday, March 14, 2011

Food for Thought..

This was posted as my friend on Facebook's status the other day, and it really got me thinking.
"If you woke up tomorrow and all you had left was what you had thanked God for the day before, what would you have left?"
What a great, thought-provoking question.
I know that I am not the most religious person on the block.  I do, however, have a deep renewed faith.  There are naysayers out there that say that I only came back to God because of what Madi went through.  I think it's more like God was there for me at my hardest times, and when I finally broke through and trusted Him to bring me where I needed to be, things were a lot easier.  There were tons of people there for my family and me during all the hard times, but at night when I was tossing and turning and worried as can be, it was just God there with me.  And it was so comforting to be able to give up my cares to Him and know that He would take care of everything according to His plan.
Case in point:  When we went to Mayo Clinic on August 5th, I was irritated.  We weren't supposed to go till the 7th and I was totally thrown for a loop.  I felt like the rug was being ripped out from under me.  Well obviously God had His plan in action.  If we had waited to go till the 7th, Madi would not have gotten her heart that day.  It was then that I really learned to just believe that God would work it all out in the end.
It was also during that time in our lives when I really learned how to pray.  How to just talk to God, which is really all that praying is.  Now, many times a day, I stop for a moment to thank Him for my blessings.  There are many to be thankful for! 
I no longer take the small "wins" for granted.  I am thankful for every little victory we have as a family or as individuals.  And when the going gets tough, as it's bound to at times, I just try my hardest to take it in perspective.  Life could be so different for me, and I know that I am extremely lucky.
So, if I woke up tomorrow morning and all that was left was what I had thanked the Lord for the day before, my life would still be very blessed indeed. 
What would you have left?

Friday, March 11, 2011

Ready for a challenge?

If there's one thing I love to do, it's read.  I remember when I was pregnant for the first time I got told quite frequently that I might as well kiss my books goodbye.  That I would never get to read again beyond Dr. Seuss and other illustrated, rhyming stories.
I have found that to be so far from the truth.  In fact I think I read more now than I ever did before kids.  (Which is saying a lot because I have always been an avid reader.)  I think it has to do with the fact that my kids go to bed at eight o'clock.  Once they are in bed I have plenty of time to dive into a good book.  Books have always been an escape for me, and now they are what winds me down at the end of the day.  Rarely a night goes by that I don't read at least a little bit before bed.
So, with that said, I am embarking on a new journey.  I am going to take the 100+ challenge!  I stumbled across this one on my cousin Ali's blog.  Another blogger out there is hosting this challenge here.  I currently use an application called Visual Bookshelf on Facebook, so that's where my books are listed.  I will keep you all posted, and challenge all you readers out there to take this one on as well.
Happy Reading!

Wednesday, March 9, 2011

Why I Do What I Do

If your loved one had cancer, what would you do?  Or how about diabetes?  Multiple sclerosis?  Cerebral Palsy?  I know what you would do-you would try to make your cause known.  You would attend events pertaining to your loved one's disease.  You would do walks or runs or silent auctions in hopes of raising money for the issue that had so deeply affected your life.
So it goes with Madi.  It was not my choice to be thrust into the heart world.  I didn't ask for an extensive knowledge of ejection fractions, catheters, ECMO and the like.  But here I am.  I believe that I should make the best of this situation that I can.  To me that means that I have not only fully accepted my position as heart mom, I have embraced it. 
If you follow my Facebook page at all (or even the CaringBridge site) you know that I am usually up to something.  Whether that means organizing blood drives, fundraising for HeartWalk, assembling goody bags for kiddos in the hospital, or bringing donations of pop tabs, books and supplies to the Ronald McDonald House, I am on it.  I firmly believe that it's important to give back.  When you go through something like we did you learn very quickly about the importance of the kindess of strangers.  It doesn't even have to be something big or expensive.. just to show you care is sometimes all it takes to turn someone's day around.  For instance, when Madi was in her isolation unit at Mayo there was a volunteer that came around every Thursday and would give parents a hand massage.  It may not sound like much but that half hour every Thursday went amazingly far at restoring my pschye. 
So yes, I will "spam" my Facebook constantly with articles about kids with CHD, legislation to get better funding, requests for donations to specific causes, or even a signature on a petition.  I have heard comment from some people saying that they think I do too much.  That pretty soon people won't listen to me anymore because in essence I don't shut up so they have to shut me out.  That comment not only stung but it kind of fueled my fire.  Since when is trying to raise awareness "too much"?  At what point would people recommend I walk away and refocus on something else?  To me that's just nuts.  I no longer am able to work outside of the home.  This is not only something for me to do, but it's something I can feel good about.
Madi is one of the lucky ones.  So far, she is progressing beautifully, and we have not really had any issues since she got out of the hospital.  Not every parent of a child with a heart defect (or any disease for that matter) can say that they are lucky.  So, we keep pushing.  For better care, insurance benefits, and procedures.  For more early intervention and research dollars.  For a cure.
Since we haven't found that yet, our work is not done.  And it won't be.  Not on my watch anyway.
The way I see it?  If you don't like what I say on my own Facebook page, don't read it.  If you disagree with what I post, again, don't read it.  If you think I do too much that's fine too.  I don't need anyone's permission to rally for a cause that has effectively changed my life, and done devastating damage to other peoples' lives that I happen to care for very much. 
If this post seems a little bit bitchy and defensive, that's cause it is.  I never thought I would have to defend my position to anyone but here I am.  Just the fact that I have to explain things is rather dumb if you ask me, but here I am-shouting to the rooftops that I am a crusader for heart health.
And no one will be able to shut me up.  :)

Sunday, March 6, 2011

WOW! What an empowering and beautiful thing to read!

I saw this today on a fellow heart mom's blog.  It's hauntingly beautiful, and voices all the fears that a heart parent never wants to speak of.  But at the same time it's rich in gratitude and hope.

Some things...
Can't be held in your hands...
Like hope, and faith...
And dreams and plans...
Some things...
Remain so hard to see...
Like courage,strength, and bravery...
Wisdom,knowledge, inspiration...
Finding acceptance...
In our situation...
I know God heard...
My every plea...
He knew what I needed......
Then He chose me.

I walk toward the doorway...
And then I step through...
My child lays fighting...
In this ICU...
Wires all over...
Monitors beeping...
Here lies my child...
Peacefully sleeping...
Sometimes I'm afraid...
Of all that I see...
But I remain thankful...
Because God chose me.

And now we are home...
And I'm watching him play...
And I'd often wondered...
If I'd see this day...
When things would be normal...
And worry has eased...
He looks up at me...
As if he's quite pleased...
And yes...I still wonder...
What will come to be?
But I remain thankful...
Because God chose me.

I think about heart friends...
Now no longer here...
Their family now facing...
My very worst fear...
And as loving parents...
Hold tiniest hands... happens...
God has other plans...
And as parent's question...
The things he went through..
This small angel whispers...
I'm glad HE chose you.

He didn't look upon me...
And say you'll rise to fame...
Have all that you could ask for...
Or be a household name.
I'll never win a grammy...
Or paint rare...priceless art...
God chose me to love a child...
With such a special heart.
~Stephanie Husted

Saturday, March 5, 2011

"You Stepped In What?" A tribute to how motherhood has changed me.

Two days ago, Madi had another of her infamous vomiting episodes.  Thankfully they are a lot less often than they used to be, but when they come they are miserable nonetheless.  After frequent exams by all kinds of doctors and even a swallow study, the vomiting seems to be medication-related.  There really is not much else we can do besides hope that it continues to lessen as time goes on.
Anyway, I am getting off the subject at hand.  So Madi was in the middle of an episode and I was rushing her down the hall to the bathroom.  Upon reaching the linoleum (bare, as the rugs were in the wash from another puke-fest earlier that morning), I slipped in what was coming out of Madi's mouth.  Gross.  To top it all off, whilst sliding across the bathroom and trying not to drop Madi in the tub, I twisted my ankle.  I am sure that it was quite comical to see.  What a way to start the day, huh?  I wouldn't have it any other way.
Motherhood has changed me in so many ways.  I can't imagine what life would be like without my girls.  I have learned many lessons along the way.  For instance..
Motherhood is not for sissies.  Right out of the gate, it's messy and painful.  From childbirth to nursing, dirty diapers and baby spit-up, it seems like you are always wiping or deodorizing something.  I have officially become the mom that holds out their hands to catch vomit in order to spare the freshly cleaned carpet.  I am sure my mom just sits back and laughs when I call to relate my newest experience with body fluids.  She raised four kids, so she has had her share of interesting messes.  (Some of which I remember vividly.)
When you have children, you learn to stop and smell the roses.  And squish ants.  Inspect every leaf blown across the yard, and point out every airplane, cloud, or bird.  My kids have taught me to just slow down a bit and appreciate everything, to take it all in.  Just the look on my daughter's face when she finds a baby toad is enough to change anyone's bad mood.
Another thing that Madi and Sydney have taught me is patience.  Ok, so maybe I am not what you would call super patient but I would like to think that I have improved.  It's funny how you can tune out a kid that's screaming their guts out because they want ice cream.  Right. Now.  In fact there have been several instances when one of the girls is having a fit because they are in trouble for one reason or another that I have had to turn away and laugh.  There really isn't much that they do that can't be laughed away at some point.  Of course, I can never let them see that, cause then they think that whatever they did to get them into trouble is a game. 
Motherhood is the opposite of privacy.  It doesn't matter what you are doing, your kids will find you.  And harass you.  Nothing like going to the bathroom and having the door whipped open to your four year old saying "MOM!  Are peein?"  Or when it's supposed to be your sleep-in day and the hubby is not paying attention and the bedroom door is flung open, rapidly propelling you from your bed and dashing all hope of sleeping any further.  Consequently, most of the time when Madi does this to me, it's to tell me that she pooped.  Yippee skippee.  But the smiles on the faces of the girls takes away any annoyance there may be at having your potty break interrupted.  You can't be mad when your child is staring at you, grinning away like nobody's business.
Perhaps the greatest lesson of all is that of unconditional love.  I see this one more as a gift or reward.  It doesn't matter what I weigh, how I vote, or if I was boring or grumpy that day, Madi and Sydney are always ready and willing for hugs and kisses.  Madi recently told me I was her best friend and it seriously almost made me cry.  I just hope that when they are older, they realize how very much they have changed my life for the better.
Vomit, dirty socks, boogers, ripped books, crayon-marked walls and all.

Tuesday, March 1, 2011

From Blaine to Holland

Recently, a family member of mine (who shall remain un-named) saw that I had changed my profile photo on Facebook to one of my daughter Madison while on ECMO following her heart transplant.  I will admit that it was a little disturbing although not anywhere near as graphic as some photos I have of her.  It was my profile picture for all of CHD (Congenital Heart Defect) Awareness Week.  I stood tall, proud, and strong with my other heart friends out there and let the world see a glimpse into what it is that these kids go through.  It was my hope that seeing the photo would inspire others to talk about CHDs, to raise awareness and rally for research.  Most people, while they didn't necessarily enjoy the photo, knew why it was there and what purpose it served.
Not this person.  She called me up in a state of fury such as I have never heard.  Spewing vile comments and horrible accusations, she informed me that I should not be a parent due to what I had "done" to Madi by posting that picture.  The words "sick and disgusting" came up a lot, as did the effenheimer.  I was shocked and horrified and more than a little hurt.  The last words she said to me before I could swallow no more of her venomous rage were that she wanted to know when I was going to let Madi "stop being the girl with the new heart and let her live her life."  My answer?  Never.
Now, let's get this straight first and foremost.  I would do absolutely anything for either one of my children.  I am unbelievably grateful that they are my kids, and thank God every single day that they are here.  I know how incredibly lucky we are, as so many of the children born with a CHD do not remain on this earth for very long.  All that aside, a heart transplant is not a fix. 
The long and short of it is that we simply traded one set of problems for another set.  Madi will remain on some form of medication for the rest of her life.  She faces many battles that others don't necessarily have to deal with such as increased risk of infection and a very significant possibility of cancer, kidney transplant, and possibly another heart transplant somewhere down the line.  Don't get me wrong, we do everything in our power to not dwell on such things. 
Tell me this, though: how could it not be in the back of your mind at some point just about every day when you have to start every single day taking your own child's blood pressure, temperature, and weight.  When you have your very own stethoscope (and we aren't talking from a Fisher Price playset either) just so you can check to be sure your child's heartbeat sounds like it's supposed to.  Or when you have to dole out horrible-tasting medication to your baby at least twice a day and watch her gag it down, knowing that it's for her own good, but that she isn't quite at the point where she understands that yet.
I have done every single thing in my power to be sure that Madi has as normal a life as she possibly could.  I have researched, questioned, and pestered the hell out of cardiologists, nutritionists, teachers, therapists, and other transplant families.  Madi gets in-home therapy 3 times a week to deal with her significant developmental delays.  We have become nothing short of germaphobic in order to protect her immunity.  I do this all happily, so that Madi can experience as many "yes" moments as I can manage for her.
I have become nurse, teacher, therapist and nutritionist on top of mommy to Madi.  And I do it gladly. 
A friend of mine recently showed me this poem called Welcome To Holland and it resonated so truly to my own life that I have come to think of my cute, cluttered home in Blaine as my own personal Holland.  And I am truly, totally okay with it.
Don't get it twisted around:  I do what I do not to hold Madi back, but to let her fly-to the real Holland, to the moon-wherever. 
That is, if she wants to.


Yes, I know.  I have tried this before.  And failed.  Have faith in me, I can do it this time!
I have decided to start a blog.  Again.  Not because I feel the world needs to know everything there is to know about me.  Not to promote myself and my family and all the causes near and dear to my heart.  But simply because I feel it's going to preserve my sanity.  Call it online therapy, if you will.
Until recently, I have used my Facebook page to let my feelings out.  I thought it was a safe environment in which to garner support from people in my life.  Despite the fact that these were things posted on my own personal Facebook page, I caught flack from it no matter which way I turned.
Apparently, you aren't allowed to do that.  Whatever.  In any case, I have decided that from now on, this will be where there are no censors on who I am.  Like it or not, take it or leave it, this is me.
A true Minnesota mom.