Posts filed under: ‘Life with a CHD‘




Update


Sometimes I forget that there are people that read my blog that I am not friends with on facebook.  And I forget that I should update here once in a while, too.

We went to the cardiologist’s on September 26th.  Everything looked fine.  Sating at 93%, we believe the fenestration (hole) from the Fontan has closed.  (Yay!!)  But, they still want to do a catheterization in the spring.  This is the FIRST time I have ever agreed with the Doc when he said, “See you in 6 months!”  (I usually protest and make up reasons why we should see him again in 3 or 4 months.)  His new thing, (ever since I KNEW something was wrong after her 2nd surgery, and she ended up needing the emergency, LVOTT procedure) is “Give me two valid reasons.”  Last time I said 4 months and my two reasons were: “Because you just said you want to keep a close eye on her fenestration due to her stroke and she has a tendency to pull something funky after everything goes so well.”  He agreed.  This past visit I asked if we could stop her Plavix.  “Give me two valid reasons why I should consider this.”  1.)  It’s a pain in the butt to travel with, since it has to be refrigerated and 2.)  It’s such a new medication that there is really no long-term proof of whether it is good (or safe) to be used with a regular aspirin regimen.  He rolled his eyes at my first reason, but agreed with my second, and thus NO MORE PLAVIX!!!  Back to 2 medications a day!

School:  I was inducted into Phi Theta Kappa (National Honor Society for two year colleges.)  I’m very proud.  I have a 3.8 GPA, and I have worked, raised a special needs child, and run a household all while attaining that average.  I FINALLY got accepted into the Nursing Program for next fall.  (2012.)  That’s when I actually get to take nursing classes and go to clinical!  This semester is really boring, with Health Science Seminar (which I should have taken earlier because it is to help you figure out where you want to go with your career and give you study tips for Anatomy and Physiology, when I have already taken both of them and got 4.0’s in both.

Ben just applied to school though, and is going for machining.  I think that is a wonderful, dependable career that he will really like.  I’m proud of him.

The only good thing about this semester and psychology class is that my teacher is making us read “Tuesdays with Morrie.”  I read this book when I was in 7th or 8th grade, but I’m so glad to be re-reading it now.  It’s one of those books that you should re-read throughout life, because each time you’re going to get something new out of it.  It’s one of those books that truly inspire you, and if you’re a motivated person, it will actually change your life.

Legislation:  As you may know, I was the one who started the Pulse Oximetry efforts in Maine.  (Each state has an advocacy group that is working on making Pulse Ox mandatory on newborns.)  We have 15 days until the Legislative Council meets and decides if it will be voted on in the January 2012 session.  I’m pretty nervous.  I have put a lot of effort into this.  I have written OpEds, numerous emails, spent many hours on the phone, and most recently  I did a radio interview.  (I believe we are going to do a news segment about it soon, too!!)  It’s all very, very, exciting but very, very exhausting.  It’s a full time job in itself.

And after writing all that I just did, I’d like to state that I am very proud of myself.  Although my life is not perfect, and there are many things that I want but just can’t quite reach, for the most part I am very pleased with and very content about where I am in life.  For just having turned 22, I’ve accomplished quite a bit.

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6 comments October 15, 2011

The randoms


I’ve had a bunch of things pop into my mind over the last few days, and I thought I’d share a few with everyone.  :]

When Ava was little, about a month and a half out of surgery, I finally let a friend hold her.  I never let anyone hold her when she was little.  (For those of you who don’t know, for 8 weeks after open heart surgery you can’t lift the kids under their arms, like you would normally pick them up.  The sternum is cut during surgery, and needs time to grow back & heal.)  So this friend went to sit her up, and grabbed her under the arm and sat her up.  I freaked out.  I was so angry, at myself—for possibly not being clear, and at this person because I knew I had told her that she could not pick her up under her arms. 

Then another time…

I handed her to a friend to hold her, and she kind of tensed up and said, “Wait!  How do I hold her!  I don’t know how I’m supposed to hold her.”  And, at this point she was not fresh out of surgery, and you could lift her under her arms.  I got mad then, too.  I wanted to scream, “She’s a normal kid!!  You hold her like you hold your nephew, or any other baby for the matter!” 

It’s funny.  Both situations were no one’s fault, and both “mishaps” were just that, mishaps.  Funny to think back on.  I expect people to be able to understand, and remember because I have to.  That’s just not the case.  And, in retrospect, I prefer the latter.  I would much rather people ask how they should hold her than to guess and end up hurting her. 

At this point, 4 days away from surgery—we just want it over.  The waiting game is getting old.  We’ve known the date since December.  This week is dragging.  BUT, we’re starting to get….excited?  That’s not the right word.  But when Ava was born we were so excited for the time for the Fontan to come.  It’s the last surgery, the stage 3 of 3 for the “mending” of Tricuspid Atresia.  This is supposed to be…”the end.” (OF SURGERIES!) And now, I’m starting to remember how amazing it is to see pink toes & fingers on your baby.  I’m excited to see her pink fingernails.  No more blue lips?!  Hopefully an improvement in breathing!  Yay!  Good things are sure to come.  (Granted, that’s after making it through surgery and hopefully little to no complications during recovery.)  Anyone affected by CHD will understand that, anyone who hasn’t experienced CHD will think that I am thinking extremely negatively by saying IF she makes it, IF there’s no complications… But that’s the reality of open heart surgeries and kids living with Congenital Heart Defects.

But, here is something that should ease all of your minds.  (The ones who haven’t seen it themselves, and to those of you that have—maybe you’ve never thought of it this way before.)

When you see your baby in the PICU for the first time after open heart surgery they are connected to SO many wires, machines.  IV’s, heart monitors, o2 monitors, blood re-infusions, blood transfusions, brain activity monitors, medicine pumps, etc.  And to anyone who hasn’t seen their child laying there connected to all of this, that is what they are fixated on.  The machines and the noises.  When we walk into the PICU for the first time after surgery, we see our baby.  We see our sweet little girl.  We see that she is alive.  We see her fighting.  We see our daughter, Ava Elaine Allen.  The surroundings disappear.   The machines and the noises and just there to make sure she is okay.  All we care about is our baby laying there, waking up.  It’s not scary, usually it’s blissful.  So the machines are loud and take up too much room, but there in the middle of everything is out PERFECT little girl.  And that, at that moment, is truly all that matters. ❤

3 comments February 9, 2011

You live a crazy life


This past year, close to Christmas, I made the “mistake” of taking a “friend” along with me to get some things that I would be dropping at the Ronald McDonald House.  (I warn you, I will be using “quotations” a LOT during this post as there are a lot of words I am using LOOSELY.  I say “mistake” because it wasn’t a mistake at first, but I soon realized it really was.  And I say “friend” because as this tale unfolds you will realize she’s not a friend, and she never really had been.)  Wal-Mart was busy and I was whipping my cart down the aisles ready to be anywhere but there.  I picked up some Tupperware, a card, and then went to pick out some sprinkles and frosting for some cookies. 

Said “friend” was on the phone the whole time we were there.  Never mind the fact that I hadn’t seen her in months, but I wanted her help and her opinions.  She finally hung up and I was explaining that I needed a few more boxes of spaghetti, another jar of sauce and then I needed to pick out stuff so that the kids could decorate the cookies.  (I was dropping off cookies at RMH and I wanted to bring the things to decorate them so if there were older siblings at the house they would have something fun to do.)  And as I’m explaining all of this, and my schedule for the next week, “friend” says, “You live a crazy life.”

It probably shouldn’t have hit me as deeply as it did but, it left some questions in my mind.  “My life is crazy because I bring my child with a terminal illness to the doctors?” (I mean, yeah, we go a lot but they are all necessary appointments.)  “My life is crazy because I’VE been in the Ronald McDonald House and know what would have helped me, so I’m crazy to give back to them what I think could help someone else?”  “My life is crazy because this year I have money to help someone else and I WANT to?”

No.  Your life is crazy.  (Let’s not talk about the fact that you don’t care about humanity unless they are directly affecting you, or the fact that the most serious thing you’ve ever had to deal with in your life is a bad break up, orrrrr the fact that you could never be bothered to take a moment out of your drama filled life to give back.) 

That is my normal.  The Dr’s appointments, (even around Christmas!) talking about people I’ve met online that have been where I am in my life, and giving back whenever I can.  Reaching out because there is a possibility that I might touch someone else’s heart when I do.  Busy, yes.  Crazy?  Absolutely not. 

I’m sure it’s hard for people to understand why I talk so much about Ava and her CHD and about the wonderful people I’ve met online and all of their sweet babies.  I talk so maybe you can TRY to understand, just a little.  I talk so you’re aware.  I talk about the people I meet because they mean a lot to me.  I follow along with their journeys.  They let me into their life, a VERY personal aspect of their life, and I treasure that.  I love that these people have given me a chance to watch them, and their children grow.  I love to watch the awareness they raise, and the next steps in their lives.  Living day to day with a kid with a Congenital Heart Defect IS hard, but there is a lot about it that I LOVE.  I love that I have opened my eyes to the needs of the world around me.  I love so many people I have met along the way in our journey.  I love the energy I have for life now.  I do not live a “crazy life” I simply live a more enriched life now that Ava is in it.

2 comments February 7, 2011

Here come the crazies…


The weeks leading up to heart surgery are surreal.  Until the moment you see your baby in the PICU your mind is just so full and your thoughts are everywhere.

My mentality changes so much before surgery.  I overanalyze everything.  (I always do anyways, but even more so now.)  Every move Ava makes I wonder, “Is this her saying good-bye?”  And I feel like I can’t think about the outcome of surgery because I must have the power to jinx things and sway the outcomes by my thoughts.  I feel like if I think “Everything is going to be fine.  She’ll do great and it will all be a huge success” then it will head in the other direction.  And thinking the opposite just isn’t an option.  I just try not to think about the outcome.  That’s hard.  (But, having gone through this three times prior, I know I have felt this way every other time surgery was approaching, and things have been fine.)

Knowing Ava now is much harder.  The first three surgeries all happened before she was 6 months old, so a year and a half (almost) has gone by since her last surgery and seeing the little person she has come to be is amazing, and having to think of her not being here is just way too hard.  Seeing the loving, caring, sweet, brilliant personality she has makes me think “she really has a purpose in life, she’ll be here for many more years” but I still can’t toss aside the faithful saying, “only the good die young.”  It’s so hard to not know the outcome.  It’s only the not-knowing part that kills me.  Really.  The second I see her all hooked up to wires and monitors in the PICU I can sigh with relief.  Yes, it sucks to see her all cut up and bleeding and obviously in pain, but that means she made it.  It means the surgery part is over. 

When I was pregnant with Ava I didn’t want to set up anything.  No toys, no clothes, no crib.  I was so worried that I would come home from the hospital a week later with no baby and I’d have to pack up everything.  This all comes back to me every time we pack for the hospital and for heart surgery.  What happens if I have to come home with no baby, and pack all of this away?  It’s more than I can think about most days.  But the few weeks before surgery it’s so hard to keep my mind from wandering in that direction.

It’s just so hard.

But this is my life.  This is her life.  This is what has to come.  And this too shall pass.  And I can’t choose the outcome.  And I can’t keep it from coming, and I can’t keep her safe.  All I can do is try to keep myself sane, and try to make things as easy for Ava as possible.  It’s a helpless situation, all things considered.  But I can’t help but to worry and to think, and to stress.

One things for sure-  Ava is just as stubborn (and possibly more so) than myself.  Besides that, she is a fighter.  And, for the record she has always done well with recovery.  She has always sailed through surgeries.  She’s the most amazing little girl I’ve ever known. 

Also:  Since Valentine’s Day is the day of her Fontan, and the last day of Congenital Heart Defects Awareness Week (February 7th-14th) I will be planning to film us at the hospital and post these videos on my youtube channel.  I plan to tape the waiting room where we are with Ava right before surgery, the waiting room we sit in while she’s in surgery, and the first time we get to see her in PICU, along with (hopefully) various other video updates.  For those of you who have not seen my facebook and my other videos of Ava please check it out!  HeartMommaMeg27 is my channel! 

As always, thanks for taking the time to read and please tune in to my youtube on Valentine’s Day and step inside our journey with CHD!

(And, how cool is it that it’s her last step surgery—the Fontan on Valentine’s Day?  No better day to have your heart mended!)

For now I’ll keep reminding myself: This too SHALL pass.  ❤

2 comments January 30, 2011

Pre-Fontan Jitters


I can’t help but have days like today where I just want to cry & scream at the world.

I get a voicemail from pre-registration at Maine Medical Center:

“Hey Meg, it’s Catherine from pre-registration at MMC.” 

It’s kind of sad that we’re all on first name basis.  I’m “Meg” to them, and to a few select others who recognize my number when I call I’m greeted to, “Hey babe, hope you’re not calling with another question you know already know the answer to.”  It’s nice that they care so much, but they should not have my number memorized and so happily leave me a voicemail that should really say, “It’s that time again.  Time to sign over your daughter’s life and hope for the best.  I really have no idea what you’re going through, but I have gotten really good at sounding falsely empathetic.”  Blah, blah, blah.

Next week marks the beginning of hell for us.  Appointments back to back until Valentine’s Day rolls around.  And while happy couples all over the world are having candlelit dinners, we’ll be praying in a waiting room that we get to see our happy little girl again.  (And, it’s the day before our wedding anniversary.  We’ll be spending that (hopefully) moving for the PICU to the step down unit, Barbara Bush.) 

Sometimes the reality of everything just slaps me in the face.  I regress from the positive, up-standing person I’ve become back into the childish girl who wants to cry in the corner and scream “why me?!” at God.  I still say it’s just not fair.

I know, it’ll be over before we know it and we’ll have our happy, even more healthy, little girl back at home with us.  It doesn’t calm the nerves I feel until we get those discharge papers in our hands.  It doesn’t take away the months Ava can’t play because she has a broken heart.  It doesn’t make it any less easy to pray in the waiting room, and meet her in the PICU looking so small and helpless with a fresh cut on her chest.  It hurts.  It’s always going to hurt.

I’m just scared.  I just wish it would all go away.  I wish the voicemails, the x-rays, the appointments, the fear, the need for blood work and surgery would just all go away. 

But I know it won’t.  And now I’ve had my cry.  Thanks for listening.

6 comments January 14, 2011

11:11


Every chance I get, every 11:11, every shooting star, ever birthday candle I get to blow out my wish is this: “Keep Ava happy, “healthy,” and here with us.  I refer to it as the 3 H’s.  Simple wish.  Every. Single. Time.  Because if only one wish in my life came true it would be this one.

CHD is an ugly, evil monster.  It takes the lives of so many far too soon.  It steals away our babies childhood with every minute spent in the hospital, in the lab, at the doctor’s, getting echos and EKGs.  It steals our time with our babies who grow far too quickly.  No snuggles for days and days after birth and surgeries.  CHD is the most common thief, yet it’s the least known.

I hate watching my baby go through the things she has to.  I hate watching as she cries, “No, all over.  No shots!”  This morning she told me, “No worries mama.  I glad go hospital.  Feel better.”  Which, after today’s labs and Dr’s visit turned into a tearful good night and an, “I scared.”  CHD, I HATE you.  I wish it were possible to kill YOU.  So you could never kill our babies or hurt them ever again.

I do not want to wake my baby from her warm crib to put her in the cold car for an hour long trip to the hospital on an empty stomach.  I do not want to find ways to keep her happy while she’s waiting in a Johnny for some stranger to come take her away.  I do not want to silently say my good byes to her again because I know the reality of the procedure, and her condition.  It is just not fair to have to think these things about my beautiful, smart, loving 2 year old.

Since it’s not 11:11, and it’s not my birthday, and I can’t see the stars… Please God, keep Ava happy, make her a bit more healthy, and please keep her here with us for a long, long time.

9 comments October 18, 2010

I’m constantly searching


For a way to explain what it feels like to have a child with CHD, and a way to express it to/on behalf of other people in my situation. 

Last night I was reading “Chicken Soup for the Nurses Soul” that was given to me be a very best friend.  I always read the little quote under the title of the story, and there it was.  THE quote.  The simple, beautiful quote with so much hidden behind it by Lao-Tzu:

“Being deeply loved by someone gives you strength; loving someone deeply gives you courage.”

That’s how I do it. 

It is my hope that everyone affected by CHD has an amazing support system behind them.  (However I know this is not always the case.)  I have a lot of family, and many others, that stand behind me through everything.  They have been my strength, in part.  My mom and Ben listened to me cry for days on end before Ava was born, and I will always remember the words they said and the way they held me and the silent understanding that they could not understand what I was feeling.

My courage comes from looking into Ava’s eyes and knowing she is relying on me.  As hard as it is to send her off to surgery in the arms of an anesthesiologist neither of us know, I know in my heart that I am doing what is best for her.  This is her chance at life, and I have to give her that opportunity no matter how much it breaks my heart.

I could probably keep rambling, but since the quote is so short and sweet, I’ll leave this post that way too.  I’ll always remember the way I felt the first time I read this quote and all my thoughts fell into place.  That, really is, how I do it.

2 comments September 15, 2010

9-2-2008


Two weeks prior to my 19th birthday Ava’s heart defect was confirmed.  I had an amniocentisis done on this day, also, to check for any other problems.  (Genetics, Downs Syndrome, etc..)  The amniocentisis was the most physically painful thing I have been through in my life, yes worse than labor!!

“We”ll call in about 2 weeks with the full results.”  That will stick in my head for the rest of my life.  I KNEW they would call on my birthday.  It couldn’t be the day before or the day after.  I was sitting around all day waiting for that call.  It was 3:50 and I was sitting in the living room with Ben and my mom, just lounging.  My phane rang.

“Hi Megan, I have good news, and I have good news,” the nurse said.  “Whew!” I thought.  “There are absolutely no other in-normalities with the baby.  She looks healthy as can be besides her heart, which was not genetic.  And, you’re definately having a girl!”  She sounded so happy, and I was relieved, but no one wants a call from a genetisist on their birthday concerning their unborn child.  But, it WAS good news.

I’ve learned that there are many other children out there that are not as lucky as Ava is.  Many, MANY times a Congenital Heart Defect brings about other ailments.  They do not CAUSE these things, but sometimes they are accompanied by Down Syndrome, Spina Bifida, the list just goes on and on.  It’s so sad.  These poor babies have to endure OPEN HEART SURGERY and many others need additional surgeries due to other problems that happened during gestation.  They are NOT the parent’s faults–but will forever be their responsibilities.

So that call came on the worst possible day, but that nurse could not have given me any happier news.  (Unless, at the time she was a boy–that’s what we “wanted” but now we’re so glad we have our little Ava Bean.)

6 comments September 2, 2010

You might as well stamp it on my forehead…


I have a child with a Congenital Heart Defect.

I know it, and I know people are talking about it.  Which doesn’t bother me.  People I went to high school now ask about Megan- “Wait, Smith?  The one with the kid with the heart defect?”  That’s me!  I know it’s often used to describe me.  “Yeah, you know Meg—She has Ava, the one with the heart problems.” 

My point is, it’s become such a huge part of me. 

I knew when I became pregnant that things would change.  I knew that having a child would change every single aspect of my life.  I welcomed these changes.  After having Ava I enrolled in school for nursing.  It’s a long road, but it is truly my passion and a career that will eventually let us be financially stable.  I knew that being a mom meant no going out and drinking every night.  I knew it meant going to bed hours earlier and getting up with the sun. 

I didn’t know that when we found out about her heart that it would change me, like this, forever.  Having a child who has a health problem takes a lot out of a person.  You are constantly tired, and constantly worrying, hoping, praying, and just trying to enjoy the moment you have been given.  The diagnosis of her heart defect took so much of me. 

I didn’t know that I would no longer be myself.  I let go of so much that I cared about.  Not people wise, so much, but it what made me, me.  Every relationship I ever had changed, although I built new ones. 

It’s so much easier to talk to people who truly KNOW.  You can imagine, but I promise that what you are imagining is nowhere close to how terrible, scary, and wonderful life is with a child who needs OPEN HEART SURGERY.  Only the people who have walked my same steps can understand the way I feel, and unless you have there is NO WAY you can validate my feelings.  Even though I have Ben, and he is here going through it with me, it’s not the same.  I’m her MOTHER.  I’m the one who carried her in me for 38 weeks and 5 days. 

I disconnected somewhere, at some point and I’m not sure how to get back to that time.  The time when I was me.  When I had time to worry about myself.  When I had time to enjoy something for myself.  I’m not sure if I’ll ever get back to the old Megan.  I’m not sure I want to.

4 comments August 28, 2010

Which is real again?


I feel like I’m living a double life every day. 

I have this amazing online support system.  I wish I had known about them earlier, but I am SO glad I have them all now.  I’ve connected with quite a few people that feel exactly how I do, and just understand.  It’s like when you’re at the hospital, and you have that silent understanding with everyone around you.  I don’t need to say a word to these people, because they already know.  They know why I just suddenly started crying (even if I don’t know the real reason.)  They know why I’m scared because Ava’s oxygen sat is 85.  They know how it feels to not have the answers to your questions, and sometimes they understand how it’s so hard to ask.

In “real life” I still have people that I went to high school with asking, “What’s a CHD?”  Does my Facebook not scream about it every minute of every day?  Did people just suddenly give up gossiping from good old Massabesic High.  I highly doubt it.  Sometimes I just want to scream at these people and tell them to open up their ears!  Most days, in the “real world” I feel like I just can’t speak loudly or clearly enough.  I know it’s like another language to you, I know you’re never really going to understand, but please, please, just learn a little about my other life, and try to gather a basic understanding.  Please?  It would make it so much easier on me, and on you.

I feel like a lot of people don’t even know how to talk to me anymore.  I understand, I’m a young mom, so that throws some people off.  Then they hear Ava’s had heart surgeries, and forget it!  There’s no way they could connect to me.  Look, I’m a person!  I’m Megan.  Yes, I’m also a mom, and yes, I’m a HEART mom.  I’m also a CNA, a student, a wife, but most of all—I’m a PERSON.  I have feelings.  If you don’t know what to say pertaining to Ava’s health, just ask me how she’s doing, or don’t ask about her at all.  Or, you could ask questions about her health.  It might seriously open your eyes to a whole new world, to MY world.

It’s strange to go to a cardiologist to look at your babies’ heart.  It’s weird to leave the hospital.  It’s weird to know that at any minute all of those things could be taken away.  It’s difficult to make those things a part of your daily life. 

It’s difficult to understand if you’ve never been there yourself.  It’s hard to think of the right things to say or the right questions to ask.  You’re never going to think of those perfect words, and that’s okay. 

I just wish there was a way to combine these double lives I lead and make them whole again.  So please, ask me questions, no matter how stupid you may think they are.  Open your minds, and your hearts and touch someone else’s for a minute.  That’s what I try to do every day of my life, but sometimes it’s hard for me to keep things straight.  Which is real again?

8 comments July 28, 2010

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

beautiful daughter cardiologist visit CHD CHD Congenital Heart Defect Congenital Heart Defect Awareness Congenital Heart Defects Congenital Heart Defect surgery fear anxiety fear life strong Fontan Fontan Surgery Fontan Surgery CHD found out diagnosis tricuspid atresia problem surgery Giving back heart defect surgery Heart kid life life CHD life heart tears Life with a CHD life with a CHD fear life surgery scared worried life with a chd life struggles life with CHD Living with CHD Living with Tricuspid Atresia PICU
 
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