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Megan Allen, RN

So, this post might have nothing at all to do with Ava, but in all reality it has everything to do with her.

I finished nursing school.  Then took my boards.  And, I passed.  So now, I have this pretty little addition to my last name.  The long sought after “RN.”


Many people over the years have commented on my blog asking me how I am going to nursing school with a kiddo with CHD at home… And I hope to address some of those questions here and now. 

You know that saying “It takes a village…”  Yup.  It’s true. 

I had help.  A LOT of help.  My husband was great.  He let me study when I needed to, he stayed up extra hours to do things I would normally take care of, and he has put Ava to bed almost every night for the past 3 years.  My mother in law lives about 2 miles from us, and kept Ava over night A LOT.  Clinical mornings meant I had to be up at 4 AM at the latest and in my car by 5:15.  My mom, who lives 2 hours away even made special trips to watch Ava when we just didn’t have anyone to do it.  I missed ONE lecture, my entire nursing school career.  Thanks in large part to the three aforementioned persons.

Looking back, I was severely sleep deprived.  And I only started drinking coffee in the last few months of nursing school.  I’m not sure how I did it.  Nursing school is HARD.  It is not for the weak of heart.  Neither is nursing.  So, if you’re queasy, easily irritated, can’t function on less than 4 hours of sleep a night, can’t go without eating/drinking or peeing for more than 10 hours, this isn’t for you.  If you can’t hold a puke bucket while reciting normal lab values, this isn’t for you.  If you can’t do daycare runs, gymnastics/swimming lessons, 3 hours of lecture, a 2 hour simulation, dinner, bath, bedtime, still study for at least 2 hours, write a paper and then wake up the next morning at 4 AM, nursing school is not for you.  IT WAS HARD.  But, it was so worth it. 

After all, Ava was my inspiration.  I did this for (to) myself, and for my family.  I LOVE nursing.  I love my profession.  I love caring for people, I love the science behind it, and I love that I now hold an Associate’s Degree in Science of Nursing.  I am so proud of myself.  I’m proud of my family for bearing with me. And I’m proud of my new name.



As a side note–Ava is doing well.  We had a check up in February and we don’t go back until next year.  Her holter monitor results were perfect, and we won’t do a cardiac MRI until she’s 12 or 13 years old and doesn’t have to be sedated. 



Add a comment June 19, 2014

End of the year update

I’ve realized, as this blog has lived on that every post becomes less and less about CHD, and more about life.  I have a very simply reason for why that’s true– because CHD is not that significant in our day to day lives.  I know, it’s hard to believe!  When you get the diagnosis of “heart defect” it’s all consuming.  The first 2.5 years of Ava’s life were ALL ABOUT CHD.  She was having surgeries, she has a stroke–and it was necessary to make her health the center of our universe.  So, to any people out there that have just heard the diagnosis, and are still waiting for surgeries, trying to make your kiddos put on weight, worrying about every little sneeze, cough and fever: IT GETS EASIER!  It gets better.  Really, life goes on, and CHD becomes less relevant. 

So here’s the update on Ava:  She turned 5 last week!  FIVE YEARS OLD! (As a side note– I remember not knowing if she would live for five minutes, let alone 5 YEARS.  So yes, this birthday was a huge milestone!) We’ve almost made it a year between cardiology appointments! (Yes, I finally said okay to “see you in a year.”)  It wasn’t hard at all.  Ava barely ever turns blue unless she’s freezing, and she only gets out of breath if she is running around for a long time and playing really hard.  So, we will see her cardiologist in February, and we already know he wants to do a cardiac MRI and a 24 hour holter monitor. (Ava’s first ever.  I am incredibly pleased to say that this will be her first at 5 years old!)  We are thinking they might repeat a neuro MRI while she’s in the machine and put under anyways just to see the lasting damage of her stroke.

The planned MRI leads me into school.  I scheduled her appointment for a week before February vacation, so if they feel they MUST do the MRI RIGHT NOW, they can plan it for the week after.  Otherwise, it’s going to have to wait until April vacation or May when I’m done school.  Just the way it is.  (Never be afraid to negotiate, bribe, or give ultimatums to your child’s cardiologist, neurologist, allergist–whoever!  That is how you get what you want.) An MRI is not going to be life or death for Ava at this point, so they can work around my schedule. 

School.  ONE MORE SEMESTER!  5 more months.  Graduation is May 17th and it can’t come fast enough.  I’m tired of studying and tests.  I am so excited to graduate and be a NURSE.  I’ve worked really hard for this.  I didn’t finish this last semester as strongly as I would have liked, but I finished, I passed, and I am almost a nurse. 

A lot of people have asked how I’ve gone to school.  Thankfully–my husband’s mom loves to have Ava and has taken her anytime I need to be somewhere or do something for school.  I wouldn’t have made it this far without her.  Other than that, I study when I can and when I feel like it, and I’ve done okay.  If you really want to go to school, I promise there is a way for you to do it.  Scholarships are great (and they have scholarships for childcare available, too).  Where there’s a will, there really is a way.

My current annoyances:

That college is exactly like high school with older, meaner bullies.

That people can’t put down their cell phones and enjoy the people right in front of them.  (And I am 24, and in the generation of tech and it annoys me!!)

That my dog thinks the Christmas tree is his person chew toy, and my cat thinks that the ornaments are all his new Christmas presents.

Yup, that’s it, I think.

My new year’s resolution:  (because I bet you all care. ;]) It’s the same as last year.  To give more.  I did really well at the beginning of last year, but like all new year’s resolutions, it was pushed to the back burner.  But Meg, what do you mean by ‘give more’, and aren’t you a poor college student?  Yes, I am.  If I can’t give monetary donations to an organization of my choice every months (which I hope I can manage), I have time, a shoulder, and a house that could use decluttering.  I am sure I always have something to give, even it’s only 5 minutes of my time.

Another resolution:  (but this one started 2 months ago, really) started simply as “stop gossiping.”  You see, while in school, I built a friendship primarily built on gossip, which got destroyed by, can you guess?!  Gossip.  So therefore, I decided I was going to be a better female.  I refuse to talk about people who are not there to defend themselves, I refuse to be caddy, and I promise to be *gasp* EXCITED for other people, girls, classmates, when they deserve recognition and receive praise for said task or opportunity. 

My last goal to work on: I hope this is accomplished by my two resolutions, and other factors… to build up some really good karma.  I could use it.  Not that I have bad luck and lots of misfortune, but I would just like to know at the end of the day that I have done good.  (No, not well, good.)

Thanks, as always, for listening to my ramblings.  :] 

Add a comment December 16, 2013

The last year and a half

Technically the last 16 months…. We’ve been living in our apartment, and we’re leaving here on Saturday to move into our very own house! So, I figured I’d update, and back track, and pretty much just write some stuff down because if I don’t, I’ll forget.

As far as CHD in the last 16 months: what CHD? Seriously.  I don’t even remember if it was last July, or the July before that, that Ava had a heart cath and a device placed in a leaky baffle in the Fontan pathway. (Say that three times fast!)  We saw the cardiologist in February, made plans that next year Ava would need a holter monitor (which up until then we have avoided, and yes I know that is written in some weird tense that isn’t even a tense), and a cardiac MRI.  Honestly, I’m kind of excited.  I want new cool pictures of her heart, and I’m pretty okay at reading EKGs, so bring on the monitor! But Ava, on the other hand is not going to be very excited.  She claimed after this last visit to cardio that she was just “never going to see Dr. Moran ever again” and mostly because she didn’t like me telling her she looked like an octopus while getting her EKG.  (Ooooh, one of my nursing instructors would be SO mad right now, they are eCgs!!! C-CARDIO-C, not K!!!) Anyways, that’s the plan.  And I think at that point, we’ll also be able to switch her Enalipril to once a day! Joy! So, yup, we’ll see him next February.

He was supposed to email me! I also re-read all of her medical records (yes, I request and keep all of them, and I suggest it to ANY parent–especially those with not perfectly healthy kiddos), and found out that she has a congenital fenestartion of the basilar artery in her brain.  No, I don’t have a clue what it means, No, cardio doesn’t have a clue what it means–and it’s usually found in an autopsy (BUT NOT AS THE REASON OF DEATH!) but hers was found on her MRI/MRA after her stroke.

Moving on.

The pulse ox bill– Yay! Excitement here!  Really, I started working on this almost 3 years ago.  To make pulse oximetry screening mandatory on all newborns, and I cover the state of Maine. (There’s a whole bunch of kick ass moms and dads that are working to make this mandatory in every US state).  Well– it passed UNANIMOUSLY through house and senate last week!  And this is the part I’ve been worried about, the part where it’s sitting on our lovely governor’s desk. If you’re curious, Google, you’ll be in stitches, or nauseous, I promise one or the other. ANYWAYS!  It’s on his desk–and he has until the 29th (Saturday) to veto the bill.  If he doesn’t, it becomes a law without his signature! Thank god for an awesome sponsor of this bill, because I still have no clue how legislation works.  And–an even cooler piece to this, is that most facilities in Maine are already doing pulse ox testing–and I, as a student nurse, had my maternity rotation last semester, and I actually got to perform a few pulse ox tests!!!  How awesome!

Speaking of–I finished my first year of nursing school.  I’m on my way to earning my Associate’s Degree, so just one more year!  Then, yes, I am continuing, online for my BSN.

So, we met a lot of really awesome neighbors this year.  No, no I’m lying.  If you’re friends with me on Facebook then I’m so sorry that you had to hear about their antics all this time.  We are/were living in an apartment complex with 9 apartments in each building, 11 buildings, across the street from a college, in a college town.  yeah, smart move for a family…

It occurred to me earlier today, that I have known some of you since I was living at my in-laws, a whole 16 months ago.  It doesn’t seem THAT long, but a lot sure has happened.

What stands out in my mind this year:

Ava learned about God, and on Father’s Day had a question she really needs an answer to: “If God is our real father, than who the heck is Dad?”  In other Ava news, she decided 4 was actually the perfect time to act like a terrible 2 year old.  I have scars to prove it, kidding, kind of.  She also is really mad that she is not going to school next year.  She’s been ready for kindergarten for a year now, yet doesn’t turn the big 5 until December, meaning no kindergarten this year.  She grew about a foot, and still weighs as much as a 2  year old, weighing in at 30 pounds. Ha.

What else happened?

We got a cat. Ghost.  (Again, if you’re friends with me on Facebook, I’m sorry for the million pictures–but he’s MY cat, and I love him.)

And then, for the the last two weeks, I painted.  And ripped staples out of a hardwood floor, and painted, and cleaned, and painted.  If I never paint another wall again it will be too soon.  Seriously.  But we are really looking forward to living in and enjoying our new cute little cape!

Add a comment June 24, 2013

How to parent a child with a congenital heart defect

I remember when I was pregnant with Ava, and we had very recently found out about her heart defect, when my mother in law shoved a printed copy of a website in my face and said, “See what you’re about to face, trying to deal with a kid with a heart defect?!”

I know she wasn’t trying to be mean, but jeez–I had just found out that my baby had a broken heart.  I wasn’t ready to think about how it was going to impact our future.

I read the article.  I shouldn’t have.  That’s why I titled this post “How to parent a child with a heart defect”–just in case someone else’s mother in law is searching for “how much your life is going to change and how absolutely terrible it’s going to be.” ;]

The article basically told me that I was going to live in a hospital for the rest of my child’s life, and that we would have at least 10 prescriptions to give her, probably hourly forever, and how delayed she would be because of blah, blah, blah…

We did live in the hospital for a while, I do have to give her 2 prescriptions a day, but delayed? Nope.

Point is– this article was wrong.  And I’m not saying that there’s not a possibility of any of the above happening.  There absolutely is.

But do you know what it’s like for me to parent a child with CHD? Normal. It’s like any other family, with any other kid.  And I know–this is not always the case!  We’re blessed beyond words and so lucky that Ava is otherwise healthy, and happy, and just an all around great kid.  But more often than not, this is the case.  Your child will laugh, and smile, and walk, and throw tantrums, and bite you, and kick… Well, maybe not–but that’s where we’re at right now.

There will be surgeries.  There will be procedures.  This is pretty much inevitable as you enter the world of CHD.  There will be worry, and fear of the unknown, and hopes and wishes.  But, doesn’t that sound a lot like parenthood anyways?

Maybe I have a different take on things–because I don’t have a “healthy” kid.  I didn’t have one before Ava, and I won’t have one after.  I have a “heart kid” and that’s just how it is.  But I can’t see anything that we do–on a day to day basis–that’s harder, or more out of the ordinary.

Sure, we hit some milestones a little late, but we hit others really early.  Ava learned to walk, and run, and feed herself.  And then she had a stroke–and learned all over again! ;]  But that’s an entirely different story, and not the “norm”.

CHD life doesn’t come without it’s own obstacles and road blocks, but I’m not so sure these are any different from “healthy” kids obstacles and road blocks.

My point is, you are not doomed to a life of hospitals and medications and incapable kids.  Life is going to go on.  Your kids will adapt, you will adapt, and you will have lots of normal days.  You’ll make memories, you’ll laugh together, you’ll connect.  Can it be frustrating? Sure.  But that’s usually not because of the CHD. ;]

1 comment June 19, 2013

Self Esteem: When heart kids are concerned

There’s a point to me writing this post now, and I’ll get to it, but hear me out first.

I know that Ava is subject to having low self esteem/problems with her appearance/scar/being teased about her scar.  I am fully prepared to have to work with her on this issue through out her whole life.  I’m ready for it.  As being someone who didn’t grow up having a heck of a lot of self esteem, I am DETERMINED to make a better outcome for my child. When and if the time comes that she is uncomfortable with her scar we’re BOTH putting on bikinis and marching straight to the beach.  I bet my stretch marks get worse looks than her BEAUTIFUL, LIFE AFFIRMING heart scar.

Anyways.  Self esteem.

I just read a story on Yahoo! about Teen Mom star Farrah waxing and plucking THREE YEAR OLD Sohpie’s eyebrows because she had “a unibrow” and Farrah reportedly “felt bad” about it.  That. Is. Disgusting.  What are you teaching your child?  Really.  At the ripe old age of three, she’s going to start picking apart her body image.  She’s going to be self conscious about it now.  Maybe not as of RIGHT NOW, but in the future.  And Farrah herself is not a perfect role model, fixing all of her “flaws.”  She’s just teaching her daughter to hate herself from a very young age.

This is also my problem with “Toddlers in Tiaras.”  I agree that it may boost their self esteem in the beginning.  When they are the cutest, the youngest, and the funniest.  But the littler ones always come, and the older ones are not always going to be the winners.  You’re teaching them VERY YOUNG that they are not the prettiest, the best, the funniest, the smartest, and they will get discouraged by that quickly.

I think it’s cruel.  I do.  Teaching such young kids to have so many problems with themselves. Society and media are going to pound it into their heads soon enough that they are not beautiful, perfect, or worth it.  Why would you start telling them that so young?

Another pet peeve– and a FAQ in my life as a Heart Mom:

“Are you going to get plastic surgery to fix Ava’s scar?”

Point A: Am I going to get surgery to fix AVA’S scar?  Why no, I am not.  It is not my body.

Point B: Ava at this point in time has never known anything different on her body, and we talk about it in a positive way every time she brings it up.

Point C: SHE IS FOUR YEARS OLD!  I am not going to elect to put her under anesthesia AGAIN to try to “fix” a scar that is there because her HEART was repaired, and just confirms that she is a STRONG kid who is very much so ALIVE.

If and when the time comes, and I have failed at promoting a positive self image to my daughter, WE, she and I, will discuss options to help diminish the scar.  BUT, I know some FABULOUS, GORGEOUS ladies with wonderful heart scars who I know would not mind sharing their scars with her, and all of the pluses to having your very own heart scar (HELLO CLEAVAGE!) .

Well, this is my rant.  Disagree with me if you must.  This is my opinion, this is MY blog.  Don’t like it, forget you read it, or make your own blog where you can write all of your own opinions down.  :]  Thanks for respecting my page, as I would certainly respect yours.

2 comments January 8, 2013

2012 in review

The stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 2,400 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 4 years to get that many views.

Click here to see the complete report.

Add a comment December 30, 2012

Yes, I grieved.

As many of the people reading this know, I’m a first semester student nurse.  This week we covered end of life care, and grief and bereavement.  

We were assigned a video on YouTube to watch to prep for our lecture on this topic.  (I’d post the link, but it’s a lecture, and it’s long and painful, but if you’re super interested, post a comment and I will share the link! ;]) Of course, we were talking about end of life care, but on this video, this professor, had the BEST definition of grief I’ve ever heard.  I won’t quote him word for word, but he expressed that grief does NOT always mean that you lost SOMEONE to death.  It is a loss.  A loss that requires grief work.  You can grieve for the loss an idea, a new diagnosis, a thought, a perception.  And do you know what’s even better?  My teacher (who actually gave MY class this lecture on end of life care) kept up with this concept.  

I know, and I want to acknowledge that I know–there is a difference between GRIEF and BEREAVEMENT.  Grief is mourning a loss, it’s process.  Bereavement is more traumatic.  It is definite.  It is on-going.  

But, for the first time today I felt UNDERSTOOD when I raised my hand and told my teacher, “I appreciated this professor’s definition of grief.  No one seems to understand that you can grieve even when you haven’t physically LOST a PERSON.”

I went on to explain….

“I had to GRIEVE the health of my daughter.  She was born with a heart defect.  I have to GRIEVE the fact that she was not “perfect”, she wasn’t born healthy, she will face surgeries, the future is uncertain for her.  I had to GRIEVE that I couldn’t bring home my perfect, healthy baby, because that wasn’t the case.  I had to GRIEVE that I couldn’t take her home and cuddle her and breast feed her and do all the normal thing that a new mom wants to do with their new baby.”

And for the first time, I had TWO nurses, TWO professors, TWO medical professionals nodding right back at me, “Yes, you DID have to grieve.  You are right.  Grief is not all about death, it is a loss.”  

I know I’ve talked about my journey with grief about Ava’s health before.  But today, my grief was VALIDATED.  It’s liberating.  Really. 

I worked through my grief for a LONG time.  Honestly, almost 2 and a half years.  I was mad.  I wondered, “why me, why her?” I was mad at “God.”  I was mad at the Dr’s.  I bargained–“Please just let her heart grow to be normal during the rest of my pregnancy.” (I knew this wasn’t possible, but in grief you do and think and say “weird” things.) I was GUILTY.  Boy, was I guilty.  “What did I do?  What’s wrong with me?  Why can’t I just make a healthy baby like EVERY other woman can?”  I was depressed, I cried from the day I found out about her heart defect (at 19 weeks pregnant) right through my delivery and beyond.  And finally, I accepted it.  This is her life.  This is our reality.  It just is. 

But my point is really this….  Don’t take away from someone’s grief.  And people grieve for ALL kinds of different things.  YES, I KNOW how lucky I am to have Ava here with me, but it doesn’t mean I’m not sad/mad/upset/guilty/sorry for her/about the situation.  Don’t tell me I didn’t grieve, I did.  And please don’t tell anyone that it isn’t valid for them to grieve.  It is a process, it is ALL yours, it’s your experience, and you will grieve how you need to and when you need to.  

And above all, EVERYTHING you feel/think IS valid.  It is yours.  No one can take that from you.  Ever.  

1 comment November 28, 2012

A chance to go “Down Under”

Many of you know through my blog that Ava was born with a Congenital Heart Defect, Tricuspid Atresia.  She has since has four open heart surgeries.  It is through her journey that I was inspired to become a nurse.  The more time I spent in the hospital around the machines and medications, the more this career choice made sense to me.

I enrolled in Kennebec Valley Community College and will start their Associate’s Degree Nursing Program in Fall 2012.  I was recently inducted into Phi Theta Kappa, the National Honor Society of two year colleges, with a 3.78 grade point average.  As a member of PTK, I was nominated for a Delegation in Nursing through the International Scholar Laureate Program.  In June 2012 the delegation will be held in Sydney and Brisbane Australia. 

This is a once in a life time opportunity that would expand my education and career options.  Of course this opportunity does not come without a price.  The estimated cost of this trip is $6,000.  Tuition is $3,300 and air fare is estimated around $2,300.  The only way I could participate is to raise enough money for most of the cost of this trip. 

I know times are tough and funds are limited for many.  Any sponsorship is helpful and greatly appreciated.  Ideas on how to raise the funds are also greatly appreciated. 

Please share! 

Add a comment December 15, 2011

This is a very impromptu post

This is a very impromptu post.  I just felt like writing, or procrastinating.  I’m supposed to be studying for my psychology final.  I guess that’s what inspired this post, really.

I was looking for ways to procrastinate.  I don’t like this class, and I have not been in the mood to study for this class all semester.  So I have a stack of coupon inserts next to me which I’ve been cutting in between glancing at the pages of my study guide.  I finally printed my study guide 2 days after typing it all out.  And before I printed it, I baked Ava a birthday cake.  It took me 2.5 hours to bake, cut, frost, stack, frost (again) and decorate this cake.

I finally sat down on my bed with my study guide, and I checked my facebook.  There’s a non-heart friend giving birth, there’s babies in the hospital, and there’s many families stressed about the upcoming holidays.  Then I cleaned my desktop.  It’s end of the semester ritual for me.  So I put everything in to their designated folders.  “CHD Related,” “Blog,” “School,” “Pictures,” and “Legislation.”

Today I cleaned.  I went to Hannaford.  I folded and put away laundry.  I watched an episode (or 3) of Gossip Girl.  I fed Ava 3 meals, 2 snacks and got her numerous assorted drinks.  I made sure her hair got brushed, she was dressed, got her ready for bed, and gave her 3 different medicines two times today.

I read emails.  I got an email setting up a time to go look at a duplex this Friday.  I re-read an email from the American Heart Association about a Go Red for Women luncheon I am speaking at in February.  [[Note to self: Start writing your speech SOON.]]

My life is busy.

I remember times when I would get so overwhelmed when I would sit down and compartmentalize my life.  “There’s just too much,” I would think.  It doesn’t freak me out anymore.  This is my life.  CHD, legislation, parenting, studying, school, Dr’s appointments, keeping house, keeping peace, reaching out, shopping, emailing.  Somewhere along the way the neat little boxes I kept everything (separately) in became one huge (yet organized) tote.  I’m okay with that.

P.S.—I mentioned baking Ava a cake.  I can’t believe she’s going to be THREE years old tomorrow!!!  I can still remember labor (when do those memories start to fade?!)  and I can remember being so scared that I would never get to hold my baby.  I’ve held her for 3 years now, and I feel beyond blessed to call her mine.  It’s been 10 months since her Fontan and stroke.  She is brilliant and funny.  She’s recently learned to dress herself, and LOVES helping with laundry.  I can’t believe she’s been here for 3 years.  Time is a funny thing…

Add a comment December 12, 2011

The star fish theory and other weird worries

Over the summer I took a sociology course at my college.  We got to the health care chapter, and I knew I was going to have plenty to say.  We were talking about faith healing, and alternate treatments.  Most of the class was supporting one of these theories and really tried to shy away from “traditional” medical practices.  I sat and I listened, and I shook my head, and finally I laughed, and I said,

“I can’t take Ava to a medicine doctor in She-walla-walla.  And if he lit some sage and chanted a prayer while dancing it would not give her a whole heart.  So let’s not give up on surgery, and hospitals and good old MDs.”

I went on to explain that NOTHING is going to grow her half of a heart.  It’s just not.  It’s not fixable.  And when the surgeons do the surgeries, they are not trying to make her a half a heart, they are trying to best re-configure the blood flow through the structure that is Ava’s heart.  (Tricuspid Atresia.)

And when I mentioned that “she’s just not going to grow a half a heart” a kind of quiet kid behind me said, “She’s not a starfish!”

At the time, I didn’t really catch the significance, and I didn’t respond to him, but I wish I could.  There’s no better way to say it.  She’s NOT a starfish, her heart is NOT going to grow back.  This is a FOREVER defect.  There’s NO CURE to CHD.  There are a series of temporary fixes to keep them here and healthy as long as they can.  But NOTHING is going to make her perfectly healthy.  NOTHING is going to give a whole heart (except a transplant, but there are MANY more risks to transplant that I don’t want to think about yet. ;]).  This is forever, my daughter is NOT a starfish.


Today I looked at a picture of a sweet little girl who desperately needs a new heart, and I saw where they shaved her head to put in an IV.  I remember when they did this to Ava.  I was so scared.  Her hair is going to grow in weird, it’s going to look gross, Ahhhh!!  They didn’t even manage to get the IV in, since she’s such a hard stick, but they did shave her head.  And yes, for about a month it looked a little funny.  But, in the long run her hair grew out fine.  It’s down past her shoulders now and the most awesome shade of blonde, with natural highlights AND lowlights.

There’s so many little things along the way on your CHD journey that you can’t plan for.  There’s so many little things you never thought about.  Like shaving their heads to put in IVs, or that they’re always going to have metal clasps on their sternum, or that you can’t lift them under their arms for 8 weeks after surgery.  These are all things you worry about for so long, and while you’re going through them.  Then when you look back, (or at least when I look back) these are the things you shouldn’t have worried about at all!

And it’s funny, the things people think are going to bother you are the things that don’t bother you at all.  Medicine everyday?  No big deal.  It takes 3 minutes, and it’s done, you don’t think about it until the next time you have to do it.  Seeing your child hooked up to wires and monitors?  (How can you look at that?!)  I LOVE seeing Ava after surgery.  Wires and all!  It means she’s alive.  It means she’s surviving.  She’s beautiful, even with a breathing tube, and a brain monitor, and a 5 inch cut down her chest with a bandage soaked in blood.  This is their life, it’s our journey, and it’s our NORMAL.  I bet if you ask anyone who’s been through it, they wouldn’t change it for the world.

4 comments September 9, 2011

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

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