Posts filed under: ‘Tricuspid Atresia‘




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

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

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

How DO you do it?


I get asked that question a lot.  There’s no reasonable answer besides, I do it, I do everything because my child depends on me and needs me to do it.

If there’s one comment I can’t stand it’s, “I don’t know how you do it?  I could never do that!”  Yes, you could, should you have been presented with the obstacle yourself.  I had never heard this until I found out I was pregnant with a heart baby, but I absolutely love it!  “God never gives you more than you can handle.”  At first, I found that impossible to trust in.  How in the world am I supposed to be okay with knowing my child has a condition that she is forever going to have to live with?  How would I handle her dying?  How am I supposed to watch her go through (the scheduled) three open heart surgeries?!

I just do it.  Because I have to.  When your child needs their diaper changed, you just do it right?  Well, Ava just needs me to give her medicine twice a day.  She just needs me to hold her hands while waiting for surgery and while recovering.  She just needs to me give hugs and extra kisses for make her boo-boos all better.

“How do you do this, how can you be so strong?”  Last time I checked, I wasn’t really given a choice.  There’s really nothing else to do but embrace everything.  Realize my child is sick, and will always need medical attention.  Realize she is going to need surgeries, and be there when they take her in, and be there when they bring her back.  It’s not to say I don’t have my days of crying and grieving and feeling guilty.  Yes, I said grieving.  Even though my child is here with me (and doing excellent!) I still have to grieve the fact that she is not well.  She’ll never have a life without periodic cardiology appointments and medication.  I have to grieve the fact that things are not so “perfect,” although in my eyes they are.

It struck me weird the first time I was called an “opportunist.”  I almost felt like I was doing something wrong.  This word can be used in both good and bad ways.  I soon learned I was the good kind of opportunist.  I embraced the fact that my child has a CHD, and realized I could either sit back and watch it go by or be an active part of it.  I chose to raise my voice a bit and make some noise on the issue!  I have written to the Today Show, I am organizing a fundraiser through The Children’s Heart Foundation, I have reached out to many other people in my situation, and I have many more ideas on how to spread some awareness and get this disease noticed! 

I believe that something good always comes of something “bad.”  Everything has to happen for a reason.  Although I would never wish this condition on any other family, each of them have been chosen for a reason.  I do not think that we are “cursed” with Ava’s CHD.  We are blessed.  I’ve met some of the most amazing people, I have a career goal, and I have a beautiful little girl who has taught me so much about life!

I don’t do it because I want to, I do it because I have to.  I’m so strong because my daughter has given me the strength to be that way.  How do I do it?  I’m glad the choice was never mine to begin with.

2 comments July 21, 2010

CHD: Smiles included


I figured since I have been writing pretty heavy stuff, and since I am going away for a few days and won’t be able to post until Tuesday or Wednesday that I would leave you with something happy.

I’d like to list/recall some proud/happy/silly/exciting moments that I’ve had the pleasure of experiencing:  (Of course, not in order by age/whatever, because none of my blog is in order.  I write better that way.)

When we were first trying to teach Ava to clap, and she could not sit up yet, every time we’d say “clap” she would clap her feet up in the air.

Ava is now the proud owner of two rocking chairs, and INSISTS that they are actually “Ricky Rares.”

When she had just learned to sit up every time any kind of music/beat was loud enough for her to hear she would start bouncing up and down and shaking around “dancing.”  Now, she dances standing up and has some pretty sweet moves down!

She has NEVER been a cuddly kid.  Now she comes up to us 329570945 times a day for hugs & kisses.

Ava can say “love” plain as day.  She’ll say, “I love it!” But when she says I love you to mama or dada it always comes out, “I biff you!”  ❤

About a week ago we had company over for dinner.  It was 7:35 and her bedtime is 7:45.  I said, “Few more minutes Ava Bean and it’s bed time.”  Ava throws her head back and throws up her hands and simply says, “I can’t, I sorry.”

She has fits of babbling as she is trying to figure out how to form sentences.  Sometimes she gets so carried away that she clasps her hands in front of her and looks up at the ceiling saying a coherent word after about 10 seconds of babbling.

When she “toots” she says, “Oh, I toot, CUSE MES!” Or, sometimes she just says, “Papaaa!”  Blaming her very gassy grandfather.

One night we were sitting in the “ricky rare” saying our good nights.  Ava looks up at me and says, “Mama beshall, bootful, I biff you my mama.”  Translation:  “Mama special, beautiful, I love you my mama.”  Then she grabbed my face and kissed me!

We have had the pleasure of meeting with a family that lives close by.  Christine became a quick friend who I love and cherish very much.  She has a sweet little 4 year old named Sunni, who has an AtrioVentricular Canal Defect.  Now when ever I ask Ava, “Do you want to go outside/eat lunch/go to the park/read a book?”  The answer I always get is, “Wiff Sunni?!”

If I ask Ava a question she always waits a minute, as if in deep thought and then blurts out, “Uhmm..NO!”

When she was an itty bitty, and we would swaddle her, when it was time for her to wake up for a feed we would just suddenly unwrap her because we wanted to see her stretch and loudly let out a “TOOT!”

From birth to about 4 months when Ava would sneeze she would sneeze once, wind up for another one and disappointedly let out an “oh” because she could never manage to get that second sneeze out.

Not too long ago Ava had a sippy cup of water, she dropped the cup and spilled the water.  She runs over to the counter, grabs the hand towel says, “oops” and proceeds to dab at the water on the carpet with the towel.

Randomly Ava will grab the hand towel or a diaper wipe and start wiping things off saying, “I cleanin’!”

When she was about 15 months old she was playing with a bright orange stuffed dog.  She drops the dog in the middle of the floor says, “OUCH!  Hot, hot!” and starts blowing on the dog.  She runs over to the sink where she screams, “Water, WATER!”  She was pretending her dog was on fire!  How she made the connection between orange, fire and hot is beyond me!

Ava is very fascinated with other children.  Often when we are the park she will walk up to other kids and say, “I kiss” before she grabs their hand to kiss it. 

We have a “beach basket” that held beach toys that we had bought for her sand box.  She used to say, “Beach, bye bye” and walk around with it, now she puts in on top of her head and tells us she is wearing her “glasses.”

A favorite in our house is Sesame Street.  (She’s particularly obsessed with Elmo.)  Ava knows that 10:00 is Elmo time, and excitedly tells us that “Deets” is on.

We have an Elmo Potty Time DVD and at the end they sing, “You’ll do it, You’ll use the potty!”  Ava has her own rendition: “You’ll dood it, you’ll potty!”

We have the sweetest picture of Ava in a swing at her Grammy’s house.  It was the day we took out her NG Tube and her face had a terrible rash from the adhesive that she was allergic to. Her scar is still bright red as we were about 5 weeks out from surgery, and she has the biggest smile on her face!

So although our 19 month old is slightly smaller in stature than the next, she is NORMAL.  She does normal things that kids normally do.  She loves to read, she loves to dance and swim, and she LOVES to eat and talk!  She has a scar on her chest (that will someday just help her out by giving her a little more cleavage) that we hope to make her proud to wear!  She’s a fighter, she’s a tough cookie, but most of all, she’s just a kid!

The proudest moment I have had as a mother is simply being her mother.  We could not have picked a more perfect child.  She’s adaptable, easy going, active, excited about life, full of energy, curious, beautiful and so loving.  It’s hard to be at the hospital watching your child go through surgeries and doctor’s appointments but the best part about it is we’ve left the hospital WITH Ava every time.  She’s the strongest person I’ve ever met, and she is who gives me my strength.   There’s just no way I can put into words the unconditional love I have for my daughter.

5 comments July 18, 2010

“It breaks my heart to feel her move.”


I was completely alone in my pregnancy, other than the broken hearted baby girl growing in my tummy, obviously.  I had the weight of the world on my shoulders, and the rest of the world just stepped out.  No one knew what to say to me.  First, I was pregnant at 18, and everyone knows when you get pregnant at a young age it’s contagious.  So, I lost a lot of my friends.  Then, I found out that I had a baby with a birth defect, and anyone who had been within earshot of me took another leap backwards.

Of course I had Ben, but either I didn’t feel like talking or I didn’t feel like listening.  We were never on the same page.  When we found out, and we knew that there was a possibility that this baby would not live, we didn’t know what to do.  He kept asking me, “Are you going to stay with me even if something goes terribly wrong?”  Something had already gone terribly wrong, and to be completely honest, I didn’t know if I was going to stay with him.  I didn’t know if I could bear to look at him all day everyday if the daughter we created together was not with us.  I know that is a time where you should be even closer to that person, but I didn’t know how I would go on if we didn’t have Ava to keep us going.

Friends called now and then, but when the topic came up, they suddenly “had to go.”  I remember about an hour after I found out, I made the first phone call to one of my friends.  Here’s a re-cap of our conversation:

“Hey, what’s up?”

“Something’s wrong with the baby’s heart.”

“What do you mean?”

“She has a heart defect…it’s pretty serious.”

“Oh, are you okay?”

“No.”

“Oh, well…. I’m sorry… I have to go.”

I didn’t even know what to do.  There I was sitting in the food court of the mall telling my best friend that my kid had a serious birth defect and I didn’t know whether she was going to live or die, and this person couldn’t take 5 minutes out of their day to listen to me cry? 

And I remember lying in bed with Ben shortly after we found out, and Ben went to touch my stomach and I pushed his hand off.  He of course pulled back and asked me why I did that.  This is all I could say, “It breaks my heart every time I feel her move.” 

I remember maybe a month after we found out, and after we got the results of my amniocentesis (on my 19th birthday I might add—some birthday present, huh?! Although, it was kind of a present, we found out that there was nothing genetically wrong, that this was a fluke and that there were no other identifiable health problems.)  My mother in law was searching the internet for “how to care for a child with a congenital heart defect.”  She handed us a few papers that briefly (and in no way accurately) described how much “extra” care we would need to provide.  After we had read over the article she says, “Are you sure you don’t want to put her up for placement?” 

When I was 8 months pregnant, a friend threw me a baby shower.  (Don’t get me wrong—it was a BEAUTIFUL shower, and we received so many gifts and so many prayers and we were completely surrounded by love.)  But, at the time it was not appreciated.  I was about to give birth to a baby that had the #1 birth defect related killer.  I didn’t know if she was going to live.  The thought of having to pack up all of this beautiful stuff killed me.  I didn’t let myself set up her crib until about 2 weeks before I was to be induced.  I didn’t want to look at all the cute stuff and imagine her wearing the outfits, or swinging in the new baby swing.  I didn’t want those thoughts to be taken away from me with something so final as death.  I didn’t want more stuff for me to dread packing away.  My mom pleaded people to buy something for ME and not for baby. 

I can’t even go into how all of these things made me feel at the time.  I can’t begin to explain the pain I felt, and the pain I still feel from some of these comments and occurrences. 

I spent the remainder of my pregnancy in bed, with bottles of water and tissues.  I’d cry for hours, I’d sleep for hours.  I’d wake up and eat something and go back to crying until I felt tired enough to sleep again.  It was an endless cycle of daytime t.v. and nick @ nite.  I am glad to say that I don’t really remember many of my thoughts from this time, but I do remember feeling guilty.  I remember thinking how could I, as a women, not be able to make a healthy baby?  How could my body mess up such a task…people have healthy children everyday all around me, so why couldn’t I make a healthy child?

P.S.

I wish I had known about the wonderful CHD community I have found online then.  I don’t go a day without thinking of many of the parents/CHDers/grandparents, etc. that I have met.  I have so much support and love there.  ❤ Heart hugs to all of you!

I have to add that my mother let me call her ANY time of the day or night and cry, or talk, or both.  Whatever I needed to do, she’d let me.  She’d listen, or she’d cry with me, or she’d talk, or she’d be quiet.  The only person in the world I could say anything I needed to was my mother, and it’s only now that I can truly understand a mother’s love.

16 comments July 17, 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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