Sunday, April 4, 2010

What you didn't know about the surgery..

I am a CHD mommy:

I will have my outbursts.

I will have my moments where I break down in tears, for no apparent reason.

I will love my child and hold onto her tighter than anyone can imagine.

I will devote my life to my child, like tomorrow may be my last…
 
I am a CHD mommy.
 

This is what I saw when I walked into Room 316 of Baptist's PICU on March 16th, 2010. Initially I wasn't going to share these pictures publically, but then I decided I owe it to you guys. Those of you that have been following Jaida and I (through this blog) since day one, deserve to know the whole truth and reality of what this tiny angel (& our family) went through. Another reason I decided to share these pictures is because I have been explaining in several of my posts that preparation was what kept me sane. Well I know for sure that one day, somewhere, there will be a heart mommy that will come across this blog.. and she will be looking for answers. She will ask God why this happened to her child, she will want to know what to expect, and she will probably be scared after looking at these photos. The truth is..this was the reality of the situation. The good news is that it WILL GET BETTER. Remember this: one step forward, two steps back. He or she will get better then get worse and then get better. This Tuesday, April 6th will be three weeks since Jaidy's surgery. She hasn't even hit the three week mark and look at her:






The point of this post is not to scare anyone or make you sad. I decided if I was going to share Jaida's heart journey with the world, I wanted to share the whole journey, not just what I think people will WANT to see. As you can see from the pictures above my daughter is an angel. By looking at her you would never be able to tell that she was ever sick. For me, she is perfect. Always has been- always will be. If you find yourself in this same situation, or something similar just remember that God doesn't leave things unfinished and just like He healed Jaida- He will heal your child (or family member, or friend, or whomever you may know..) the same way. That is why He is called "Healer." Don't give up on God- He will never give up on you.

On a completely different note-- I hope everyone had a wonderful Easter. I know I did. Mrs. Marte said it best..Today is the best day in national history.. no day will ever be greater than this..except the day I die.

Psalm 34:1-10, 15, 17-18



I bless GOD every chance I get;

my lungs expand with his praise.

I live and breathe GOD;

if things aren’t going well, hear this and be happy:

Join me in spreading the news;

together let’s get the word out.

GOD met me more than halfway,

he freed me from my anxious fears.

Look at him; give him your warmest smile.

Never hide your feelings from him.

When I was desperate, I called out,

and GOD got me out of a tight spot.

GOD’s angel sets up a circle of

protection around us while we pray.

Open your mouth and taste, open your eyes and see—

how good GOD is.

Blessed are you who run to him.

Worship GOD if you want the best;

worship opens doors to all his goodness.

Young lions on the prowl get hungry,

but GOD-seekers are full of God…

GOD keeps an eye on his friends,

his ears pick up every moan and groan.

Is anyone crying for help? GOD is listening,

ready to rescue you.



If your heart is broken, you’ll find GOD right there;

if you’re kicked in the gut, he’ll help you catch your breath.



Isaiah 61:7

“Because you got a double dose of trouble

and more than your share of contempt,

Your inheritance in the land will be doubled

and your joy go on forever.”
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About Me

My photo
My name is Brandi and my darling honey and I have been together a little over four years now. Four months ago I gave birth to our first daughter, Jaida. This little girl is the most amazing Angel that one could imagine. God has truly blessed us in several aspects! I decided to start this blog in order to share Jaida's heart journey with family and friends near and far. Our darling daughter Jaida was born with a congenital heart defect called Tetralogy of Fallot and will be undergoing open heart surgery on March the 16th. My hope is that one day perhaps another heart mom will come across my blog as I have come across several myself, and find that my experiences can possibly help them through their own. Having a child with a heart condition can be awfully challenging mentally, physically and emotionally but EVERYTHING is possible through the hands of GOD.

About Jaida's Special Heart

My daughter was prenatally diagnosed with a Congenital Heart defect (CHD) called Tetralogy of Fallot when I was 22 weeks pregnant. This specific defect is made up of four different issues. The first issue is the ventricular septal defect (VSD) which is a hole between the ventricles. In Jaida's case, she had three large holes (one they did not know about until she was in the operating room) all of which had to be patched. The next issue is obstruction from the right ventricle to the lungs (pulmonary stenosis). Jaida's aorta also lay directly over the VSD which causes thickened muscle in that region that needs to be removed. Lastly, in Jaida's case, the pulmonary valve was extremely small for her gestational age. Unfortunately, due to its cartiledge-like texture, it could not be saved and was removed completely during surgery. Many children can go several years without needing a valve.. some can live life forever without one (most will need one). However, medical professionals are working on a new, less invasive approach to valve replacements. Instead of re-opening the chest cavity between the breastbone, researchers are trying catheterization (a tube placed inside of the vein & artery in the groin that lead up to the heart). I know that before the diagnosis of my daughter's condition, I had no idea about heart disease whatsoever. The bad thing is most people don't know anything about CHD unless they know someone who has it, or it happens to them or their child. Because of this, heart disease research is being poorly funded. In order to research trials and studies for less invasive life-saving surgery for children and families with CHD, it is imperative that more people familiarize themselves with this disease. This type of funding allows doctors to save millions of lives every year. So I encourage you to get involved and to get educated, because this disease is extremely serious and a lot more common than you may think.



Jaida's Story