Posts tagged ‘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

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

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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