Posts tagged ‘Life with a CHD ‘




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

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
 
%d bloggers like this: