I’ve been M.I.A. because my son had his final heart surgery otherwise known as the Fontane.I prepared myself for the worst and surprisingly enough Bryceon pulled through it.He went in on the 15th of Feb. and we just came home today (feb.27)We’re keeping our fingers crossed though.Sometimes,coming home soon means going back longer.I know I should look on the brighter side of things,but I’m setting myself up for the reality of the worst in case it happens.
Bryceon seems to be happy to be home.He was miserable @ the hospital.Especially when he had to walk around the hospital to help his chest tube drain.He would scream “Noooooo!Good-bye!!!” all the the way around the floor he was on in the hospital.Good-bye was his way of dismissing all the nurses and Dr.’s that would see him walking around praising him for doing such a good job.lol.Poor little dude.But he pulled through the worst of it with flying colors.Let’s hope it stays this way.
I can’t believe the amount of meds. he has to take!Coumadane being one of them(did i even spell that correctly?i don’t care..lol) That little pill seems to be the worse! It makes me think that if he even gets a paper cut or bumps his knee he’s gonna bleed to death.It’s kind of a scary med.Anyone else have a child that has been/is on it?Tips and advice are greatly appreciated!:) Keep us in your blessings and thoughts please.I’m still a little weary of something happening and us having to return to the hospital.Call it mommy nerves I guess.I tend to feel that way just because we’ve totally done the ” Yay,we’re home dance” and had to turn around and go right back and stay even longer(this has happened more than once).Heart hugs to every1 out there!

When Time Stands Still”
by Debbie Hilton-Kamm
It starts with news impossible to hear
It conjures up your every fear
It’s when they say your child is ill
That’s when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold — just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void’s too large to ever fill
For in a hospital’s intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor’s tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can’t oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that’s what they say
Because in each moment they’ve lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

just thought I’d share this link for t-shirts for CHD children and even their siblings.Check them out..they’re pretty cute!

http://www.cafepress.com/slh/425542

Being the parent of a CHD toddler is a double edge sword.On one side, you have this little ball of love that continues to amaze you everyday and the other side is Reality.Reality of upcoming surgeries,pain, stress, more “procedures” aka: more surgeries. Not the life you picture for your little one,but those those are the facts.No matter how many times you manage to pull through all the emotional and sometime physical stress, you never really seem to get past it once it’s over.Is it ever really over? My son has an upcoming Fontan surgery next month.The cardiologists have been giving us the run around with this surgery for months now. 1st it was supposed to be last November.Then they decided let’s wait until after Thanksgiving.Then surgery got scheduled to be around Christmas time.”No let him enjoy the holidays”..ooook…Finally the New Year arrived and they tell us.” We’re def. going to do it Jan 15!”.So I mentally prepared myself.I can do this again.I can be strong for my son and my family.I can’t fall apart.I can’t! Mom’s aren’t supposed to fall apart.We have to be the tree for everyone to grab onto when extreme stuff happens. Right? Wrong! As a mother’s we take on everyone’s stress and emotion and try to sweep it under our neatly swept rug so no one knows how much we’re really hurting.

So after all that re-scheduling our son,Bryceon, gets his surgery re-scheduled again!Now it’s Feb.15th( the day b4 my 28th birthday might I add).Great.So I finally had my mind prepared and set for surgery and now we go through all the procedures and test to have surgery and your telling me your re-scheduling!!! again!!!! Btw, the new surgery date isn’t set in stone either.You think I’d be happy?But I’m not.I just want my poor baby to have his surgery and come home as fast as he can.But that’s not up to me.The thing that scares me about this upcoming heart surgery is it is notorious for building fluid in the body.My son already has a problem with his body doing that whenever he has any surgery or small procedures done.This would keep him in the hospital longer, which equals = MISERABLE 3 YEAR OLD! He’s old enough to understand what pain is and what doctor’s and nurses are trying to do.He already tells them to leave him alone and just recently tried to bite..yes bite..a nurse that was trying to take his blood.I don’t blame him.I’ve seen my son get poked up to 6 times before until I had to say “go away and try again later”.He even has scars from blown veins and alot of his veins have had it.They don’t even give blood anymore.I feel sorry for my little guy.Everytime I think of what he’s about to endure I get teary eyed and a huge lump forms in my throat. I can’t imagine the pain he’s going through or will be going through soon.Most of my friends don’t even have children and the ones that do have healthy kids,so it’s hard for them to relate. I know I’m not the only mom or parent for that matter that feels this way.I guess that’s why I decided to blog for CHD. I needed an outlet.A place where there’s people who do understand and can relate. I feel like CHD parents get alienated from alot of awareness stuff.People forget that CHD is the number 1 birth defect in babies.It’s like we’re some taboo because alot of us have children that look completely normal on the outside and we speak “heart language”..lol.

Recently,I just had some man take offense that I told him not to put his face  to close to my son’s.Who does that anyways?I don’t go up to random people and try to play with their children.He was trying to be nice,but I have no idea if he had a cold or a cough.My son’s immunity is low.A simple cough turns into full blown chest cold.

I told him” Sir, please don’t get to close to my son..his immunity isn’t very good” (which i feel i shouldn’t have to explain in the 1st place!)

His response with an attitude “he looks perfectly healthy to me!”

Really?? man -I -don’t- know!!! Your really saying that to me right now?

Then explanation of Bryceon having a heart defect has to be stated.I swear I’m just going make a shirt for my little guy that says “Hands off,I don’t need your germs!” lol…not really but i do have the tools to silk screen one..lol

Anyways, so the man cops even more of an attitude with me and tells his wife

” some people are so anal about their kids these days.”

Whattttt! Are you serious?

He stated that like I manifested some crazy heart defect just so he would back up from my son!Ughh!

I’ve even had some random lady @ Target walk up to my son and kiss him!

Yes KISS him!

I was like “sdkfhasiuhfgi, are u crazy?” who does that?

Her explanation:”Your son is just too cute I had to kiss him.”

*jaw drop*

I wanted to kill her.

Seem’s a little extreme to say that but who knows where her mouth has been.Even for a healthy child that’s un-called for.Call me a crazy mom if you want..I could care less.But I’m the one that has to sit up for countless hours comforting my child when he has to go to the hospital for what we call the common cold..for him it’s like a war going on in his system.

*Sigh*

Who said parenting was easy?No one ever told me I was gonna have to become Xeena warrior princess mom  and carry a sword around to fight off the crazies!lol

Hmmm..maybe I will from now on?..lol..j/k

Yes my name and blog are a little crass,I’ll make sure to stay on my P’s and Q’s for this blog.I promise.
I am part of this CHD family as well.My 3 year old little human was born with Dextro-Cardia,DORV,Asplenia Syndrome,and a raised Left Diaphragm. We named him Bryceon.He should have been named “OH-GREAT LITTLE-WARRIOR-OF HEART-SURGERY”, I’m sure alot of us have wished we had the courage to name our CHD children that,But that would be one long birth announcement.lol Maybe a great conversation starter though?
Within the 3 years that Bryceon has been on this Earth he has endured 2 open heart surgeries,1 pericardial effusion(that lead 2 another surgery),and 9 random procedures that involved scarring him with battle wounds for the rest of his life. He has his last(cross our fingers) open heart surgery Jan 15,2010.
The infamous Fontan.
Oh what joy my Husband and I are about to enjoy all over again.The oh- so- comfy chairs that are provided for us parents in the hospital( I say that with as much sarcasm as I can),which we spend countless hours sitting in. Staring at the little faces lying next to us in pain,asleep,or just anxious to get up and play.Let’s not forget the countless episodes of cartoons we get to watch for hours on end! Don’t get me wrong Dora and Elmo are great, but I do yearn to hear the voice of a normal HUMAN on T.V. from time to time. In the end, my son is at one of the best hospital’s in SoCal( Children’s of LA) and has the best Cardiothoracic surgeon and team supporting him.
Bryceon’s journey has been an eventful one.In good reason, he was put here on Earth to help myself and others realize that life is worth fighting for. Believe me, my little guy( and your kids as well) are the Biggest Little fighter’s of life.
Feel free to visit my blog(for laughs and art and no way related to CHD.) www.bollyhoodbarbie.wordpress.com
The Bollyhood Barbie