Loss= Memorys

You don't know loss until you have to say goodbye to a child. A child that was sent for one reason and when that reason is fulfilled they must go.

I am at the point where, I JUST WANT A BABY......MY BABY!!!

9months of pregnancy + 9 hours of labor + 21 days of love + holding her twice = Life time of memory's

I don't know when or how but i do want children...LOTS,,,, of children!

Time Marches On

Only time will mend a broken heart....or so they say. 3 years ago almost 4 i lost two grandparents and one uncle and then two years later i lost a best friend. Death is not something you can plan or ever get used to EVER. I have learned that sometimes its better to remember than to try to forget all together.

When i talk about kennedy its hard yes but i enjoy it. I enjoy shareing my daughter with the rest of the word. She really was a blessing.

Thinking about our "future" kids is a SCARY THING. 5% chance of this happening again.....yes thats 95% that we have a "normal"baby but still we started out with a 2% and ened up being in the 2.

I and Michael have gone through so much and are stronger because of it BUT this IS the hardest thing i have ever had to do. Its not really the goodbye its the feeling that i will not see her grow up, kiss her boo boo's, tuck her into bed. I feel like i have been "jiped" of all the little things others dont think about....Changing diapers, poop every where, spit up, late night screaming. ALL THE minut things new parents complain about. Yes its a hassle, yes you may hate the smells and sounds but HONESTLY i would GIVE ANYTHING just to do that.

People have said " If i could take the pain away i would".....I would gladly give this pain away but i wouldnt wish it on my worst enemy. Its not really pain its an ache I WILL NEVER GET RID OF!!!!!


The memorial For kennedy

Above i Posted the link in which if you choose to watch on August 1st @ 7pm you may.

21 days!!

Kennedy Fallyn Thomas-Fuller 7/5/12-7/27/12

We love You and always WILL!!! Thank you Amanda for the poem.

·         You're a Special Little Spirit," the all great Master said, As he gently caressed the curly dark hair of the Little Spirit's Head. "you need to go to Earth to spend some time, you know, A place I send most Spirits to be tested, to learn, to grow. The Little Spirit, in sadness, slowly bowed her head, And from her eye a tear did steal and down her cheek it shed. "Don't you fret now little one, I won't let you stay too long, I'll bring you back to help me here, You'll hardly know you've been gone. You're my choicest Little Spirit, you're the apple of my eye." And he wiped the tear and gently kissed His Little Spirit good-bye. "I'm back," the Little Spirit whispered, as she climbed onto her Master's knee, And the Master said, "I told you, you would not be long away from me." And then, the Lord, He noticed still another tear welled in her eye. "Why are you so sad, Little Spirit, whatever should make you cry?" "I'm glad I'm back," the Spirit said, "but Master you must surely know, When your angel came to get me, I didn't want to go. I know you said you needed me and that I'd be gone the shortest while, But Lord, couldn't I have had a little longer earthly trial?" The Master let the Little Spirit slip down from His knee, He firmly took the little hand and said,"Come walk with me." The Little Spirit and her Lord walked slowly hand in hand, As the Master explained Her special part in the great and marvelous plan. "Now Lord, I don't mean to argue, I understand you need me home. But I left in such a hurry, I left everyone hurting and so alone. I didn't let my earthly parents know how much I loved them so. I was much too small to tell them, Lord, how will they ever know? They feel they've been cheated, and in a way so do I. Not getting to share any more than we did, how can I ever tell them why?" "Little Spirit, I know your heart is heavy with the message you need to share. But you need not worry anymore, I'll watch over your loved ones there. I'll send them loving comfort as a strong and helping hand. I'll content and give peace to their aching hearts, so they will understand. The Little Spirit looked up at her Master and said "Thank you for explaining it to me. And could you please tell them I'm safe and happy and that someday they'll be here with me." "Yes," said the Lord with a smile and a nod, "I'll tell them all that I can." Then the others came to see the Little Spirit, as the Lord let go of her hand. He said, "I'll tell them you're pure, as pure as Heaven's Gold, That I needed the warmth of your perfect soul to keep Heaven from getting cold."

OVER AND OVER AGAIN!!!

Over the past few days i have had a lot to think about. 
  Kennedy, and wither or not i am ever going to hold her, when and if she will be coming home. How we are going to make it if i don't return back to work.

Also the past couple of nights i have had the same dream.....Kennedy is crying and i keep looking for her but she is no where!! I look and i look but she is no where.

Last night was the hardest for me with the possibility of kenni not coming home for a couple of months. And we made the decision for me not to retun to work with all the issues kenni is having it would be better for me and michael not to return to work at this point.

 


HOPE, FAITH, and LOVE!!!!

Ups and Downs!!

With Kennedy if its not one thing its another.

Yeast infection...........in chest cavity & BLOOD!!!!!!
High oxygen stats.............90's when Dr's want it low 80's
3 Artieal lines...................1 wasnt good enough for her.


Yes, me and her daddy are planning on her wanting to go to HARVARD. Any donations???

Our daughter is super stroung but SUPER stuborn, Hard headed and always stiving for the BEST SHE CAN DO!!!!!

A picture is worth a thousand words

If you have any questions Just ask!!!

Light at the end of the tunnel!!!!!

Over the past couple of days, Kennedy has gotten better. She Came off echmo, Today she was off her nitrogen, hopefully soon she will be off her ventilator.

Kenni is one of the most content baby's i have ever seen. They have kept her lightly sedated, but even with that she still recognizes both me and michael. Today she stared at me for 10-15 minutes. That made my day sooooooooo much better. And i know it makes michael"s day.

But most of all i cant wait until we are able to take her home and put her to sleep in our arm.

Soon enough Kennedy will be running our house instead of PICU.

We love you Kenni!!!!

Life away from Life!!

When living with a child that has a heart defect, you learn to live on the edge. Not knowing is what hurts the most. The not knowing how to help her, not knowing if what i am doing is helping, not knowing what to do next.

I have soooooo many questions but i just don't know what to ask first.
LIKE:::::

• Why MY child?
• What does this mean for my future children?
• How come this happened?
• What can i do for her?
• Does everyone really think "why would you do this to your child?

My baby girl doesn't deserve her problems, she's just a baby! Her problems are adult issues not baby issues. Kennedy should be cornered about ...do i like this person, did that really come from me, whens the food coming. Not...this blood pressure cuff really hurts, i want my mommy if your going to take blood, am i getting enough oxygen.

As a woman you watch your mother and you learn how to be like her. Just being there is sometimes the only thing you can do.....and in my case the only thing i get to do. My husband and best friend both want to protect her and keep her safe....both of which don't think its far for an 8 day old baby to have to handle those issues. I totally agree but what she needs now more than anything is love and encouragement.

I think God wont give you anymore than you can handle. Sometimes it hard and i ask my self WHY ME....of all the people why me. I feel the judgement that people pass when i tell them she has HLHS. They then ask where and how she is...then i explain that she on her machines....They look at me like I did this to her, for my own selfish reasons. But in reality she is a normal healthy baby who just happens to need a little help getting a jump start.

Kennedy is a very special baby girl, who does things on her own time now ours. She gets her strength from her father and I ( who at times are weak). Kennedy is our rock as we are hers. She shows fear as she doesn't know whats going on. Kennedy Is OUR ANGEL, OUR LOVE, and OUR REASON!!!!

Tiny little heart!!!

Hypoplastic left heart syndrom??????

      

Most of the structures on the left side of the heart are too small and underdeveloped (hypoplastic) to provide enough red blood flow for the body’s needs.

The small left ventricle, which needs to be large enough and strong enough to pump blood out to the body, simply can’t function effectively.

Other left heart structures can also be underdeveloped in varying degrees—including the mitral valve, the aortic valve and the aorta itself

Kennedy was diagnosed with HLHS at 20 weeks gestations....only the drs werent happy calling it HLHS until she came into the world.

HLHS is a conjenital heart defect. Theres was nothing I nor Michael did to cause this problem. I know that my family knows that but for some reason i feel like Michaels bio-mom thinks i did. She hasnt even talked to me since i beged and pleaded with michael to call her. All she is conserned about is "seeing her". Honestly if you cant ask how i am doing then you dont get to "see" her. Plus i dont think she could handle seeing her in this stage.....its hard enough for me to handle.

This was after her first surgery. This was after the first time i held her. After the first time michael got to hold her.

Yes her hair is in a mohawk. Its natural.

Thats the face of HLHS. She didnt do this to her self. I didnt do it. Michael didnt do it. But this is what God gave us.

First comes LOVE, then come MARRIAGE, then.....

COMES BABY!!!!

For most labor is the hardest part! Not when you know your child with have to have surgery in the first two days of life. Yes i knew that she was going to need surgery, but i didnt know how hard it would be for me to handle. The not knowing was what was killing me. Kennedy Fallyn was born July 5th at 3:28pm. She weighted 5lbs 13.3oz and 20 inches long.

She had a full head of hair. The most beautiful eyes....dark green!!

With all the preperation about surgery and other possibliltys. I WAS NOT PREPARED to NOT  hold my daughter until she was a day old. Michael wasnt prepared to not to get to hold her until she was two days old. Then later that day She went into her first surgery. "HYBRID STAGE 1: Insert stint into desending aorta. put pulmonary bands on lung to reduse blood flow into lung." Kennedy had this done in two stages due to her small size.

INSERTING STINT INTO AORTA::: went well. No major issues. One stint got stuck on the ballons, but the dr inserted another one in order to hold that one in place.



PULMONARY BANDS::: They did an ultrasound to check on the stints. The one that had gotten stuck had moved. so while they had her chest open they desided to take that stint out and put in the pulmonary bands.

About 7pm Sunday July 8th 2012..................MY HEART STOPPED..............MY daughters heart had stopped, and they were doing chest compressions, they couldn't get it started. As me and michael sat there for what seemed like 20 years, my mom, my sister, and my brother-in-law showed up. The nurse came in.........as i prepared my self for the worst but hoping for the best, They had gotten a heart beat. It was weak but it was her heart. That night her drs descided to put her on echmo (heart lung machine).

She has slowly gotten better but we still arent out of the woods. Kennedy is a super baby. She doesnt know her name. Kennedy doesnt know her diagnosis ( Hyperplastic left heart syndrom & Mitral Vavle stenosis). She doesnt know Mommy and Daddy touch. Kennedy doesnt know PAIN. But still she keeps going on.

Kennedy Fallyn Thomas-Fuller      OUR ANGEL, OUR LOVE, OUR DAUGHTER!!!!!

Second At BEST!!!!!!

Little girls look up to there daddies, They show them what a MAN should be like. How they are suppoesed to be treated, What unconditional love IS.

Guarrenteed Not all girls are dealt the hand I was dealt but hey i wasnt complaining.

UNTIL KNOW.........Divorse SUCKS!! Spliting up everything, handiling children, Laywers!!! But it happens TO EVERYONE!!!! Me, well i just happened not to get GUAREENTEED  every other weekend ( i am not a minor). I would have loved to been able to see him every other weekend, not having to go out of my way  to talk or speak to him.  Shortly after the divorse was final, He starts seeing a 28 yr old.....btw I am 22 my husband is 25....You see my first issue. Second issue....I have to share MY dad with someone i could probably see my brother in law (28) with. Third and FINAL issue.......I am told i have to Respect his choice...which i do, i dont like it and i will tell him every chance but i do however REPCET it.

I dont play well with others FIRST AND FORMOST...if i dont like you i dont come around. seeing how I dont like HER i choose not to come around, even if that means loosing the one thing i LOVE THE MOST!!!!!  Between actions on both sides i decided I cant handle not being NUMBER 1. although you tell me SHE understands.....I AM NOT THE ONE DATING HER DAD AM I!!!!!

No need to be ugly..........but if you only understood what its like to BE SECOND OR 7th, you would be the way i am????

Dirty laundry......THAT AIR A LONNNNGGGG TIME AGO!!!!

But he's your dad........ YOUR DARN RIGHT HE IS MY DAD, and i dont want to share him with someone who could possibly be me SISTER

But she acts mature for her age.....well 5 kids will do that to you, She could possibly be sweet....dont know she just STARES ALL THE TIME, you cant just look at the cover you actually have to open it up.

So say what you will, do what you may, I really dont care. Been scared, battered, and bruise, words really are words. Have it your way or attempt to see it mine, either way its your choice, NOT MINE!