Posts tagged ‘Congenital Heart Defect surgery fear anxiety ‘




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

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: