1 in 100!!!

Do y'all wonder why I obsess about this heart disease and heart defect stuff? Well, it's simple, I have been thrown into a world that I never knew existed. I had watched my daughter fight to live. I have watched other babies fight. I have also watched some lose their battle including my own. I never in a million years would have thought that THIS could happen to me and my family. NOT MY BABY! It does happen and it happens to regular people. If I can bring this to just 1 persons attention and save 1 baby's life, then I have accomplished my goal. I want to raise awareness to this world that I never knew and never wanted to know. Heart disease/defects affect 1 in 100 babies! 1 in 100!!!!!!!! thank you Amy Robertson for the amazing words..i stole them but they were AMAZING!!

I personally was very lucky to have learn about Kennedy HLHS at our 20wk appointment. Other dont find out until they are home. Get an EKG and a pulse ox....Not for yourself but for your baby...or better yet KENNEDY she doesnt want or need more angel buddies.

Pulse Ox.................Kenni rocked it.......You should too.

All about Me!!

My autobigraphy for foster/adoption

My childhood was a “normal” childhood.  I grew up with a mom and dad. I was always a daddy’s girl. So when my parents decided to get a divorce it not only rocked my world but blew it up. Not to mention I was about 3-4 weeks pregnant. I am REAL close with my mom now. My dad doesn’t really want to be in our, mine and my sibling’s life. So I have decides that he won’t be until he realizes that what he has done and still is doing is wrong. My mom is my “other” rock in my life. First one is my husband.

My relationship with my sibling, Well there the ones born to me then the ones God has given me. I am the oldest of 4. Alicia Vega-Russell is my sister; she just got married to Mathew Russell. Those two are my biggest supporters. They come running if I need them and it goes both ways. They don’t have any children; they just got married June 13^th, 2012. Mathew is a defensive end and Line man for Wayland Next in line is my brother Joshua Vega. He is 17 and a senior at New Deal High School. Josh broke his back a few years ago so we had to learn to adjust because of sports and all. But he is the football team’s manager, He does Cross country, Track and some baseball. Then comes Michael Vega…..Let’s just say he is a breed all his own. Michael is the baby but yet he is bigger than all of us. He is a freshman at New Deal High. He plays JV football…and well he hasn’t decided yet. Both of my brother show stock at stock shows. We are all real close we talk on the phone mainly through text daily. Alicia lives in Plainview but visits VERY OFFEN. I and she are closer now that we aren’t living under the same roof. We had issues when we were younger but know have learned from it and moved on. All of us at least try to get together at least once a month and all go out and do something fun as a family.

Our marriage…..Michael was not the typical guy my parents or siblings could see me with. They told me he was different, and boy were they right. We started dating September 6^th 2008 after being best friends for about 3 months. We met through Michaels Brother……Actually me and his brother were “Talking”—thinking about dating. But we decided we were better of friends. Then me and Michael started hanging out more and more. Then on July 4^th of  2010 Michael asked me to marry him…..I was mad because I had to be up at 5am the next morning and it was already 10pm. I am a very scheduled person by the way and I know how much sleep I need. I wanted a long engagement so we could live together and “get to know” each other, How they run what make them tick. We married September 6^th of 2011 at College Heights Baptist church……I had wanted a winter wedding but because of threats made by My Soon to be mother in law we wed early. I and Michael aren’t perfect but as far as conflict…..We talk most of it out. If either one of us has an issue we sit and talk about it. No big decisions are made until we both come to an agreement. As far as our “sexual relationship” our relationship wasn’t built on sex. Sex for me is a VERY private thing that should only happen if both parties are ready. I mean we aren’t celibate, But we keep things behind closed doors. Our strengths, I would say is our communication, if one of us isn’t happy we talk about it until we are blue in the face. Our weakness…….our good heartedness, we can’t say no, no matter what.

Michael’s personality…..well he is goofy, loving, and super head strong (but in a good way). He is my rock, and my best friend. We laugh, we cry, we grow together.  Our marriage isn’t perfect, but it’s our kind of perfect. Kennedy Fallyn Thomas-Fuller 5lb 13 oz born July 5^th 2012. Kennedy had a Congenital Heart Defect…..She was born with a broken heart for the lack of better terms Hypoplasty left Heart Syndrome and Mitral Valve  Stenosis. She underwent a procedure that put a stent in her aorta at 2 days old, and at 3 days she had open heart to get the stent out and place pulmonary bands on her lungs. Kenni was our angel. We weren’t sure if we could even have kids due to my mom’s issues. Kenni heart stopped at 3 days old….worse day ever. After this she caught a yeast infection in her chest cavity. Kennedy had good days and bad. She just never recovered. At 22 days old…..Kennedy Fallyn was called home to Heaven. Kennedy caught NECK….a bowel obstruction. I am very thank full for the 22 days I had with our princess.

Me…..well I am an open book. I worked at my father’s house until Kennedy. Because of her heart I had decided to become a stay at home mommy. I plan on returning to school soon. My personality….I am fun, loving, and caring. My appearance….Brown/reddish hair, green eyes. I am very happy with the way I look.

Loss….Has become second nature to me sadly. I lost my grandmother 4 yrs ago in July, My grandfather 4 yrs ago in November, My uncle 4 yrs ago in December, and My best friend 2 yrs ago. My daughter July 27^th 2012. I have a good support group In order to help me handle this.

Angels among us!!

Kennedy has been on our familys mind alot lately. This has never happened. I was on facebook, when i came across this........


This week has been a hard week for me. I have been stressed and worried, and I have found myself thinking about Kennedy often. I go to work and see all the happy healthy babies and it makes me sad. Yesterday, I had to be at work at an ungodly hour after working late the day before, so I wasn't in a good mood. A woman who visits the st...

ore often came in early that day with her young son. He had a note book with him and was drawing in cart while his mom shopped. She came to my line with a full basket. When I finished checking the groceries I started talking to the boy. He handed me this picture and said it was for me. When I asked him what it was he looked at me and smiled and said "It's your angel." I thanked the little boy for the picture. I don’t exactly understand what or why he gave me this but I choose to believe that it means that I am not alone in this journey.

"Angels are principally the guardians of our spirits. Their function is not to do our work for us, but to help us do it ourselves, by God's grace."

 

Kennedy is our angel. My baby girl....the one i carried for 9 months...the one i was soooooo in love with......IS AN ANGEL!!! Go kennedy.

 

Loss of words!!

A man's home is his castle. Not even his wife snoops through certian things.


When you marry a man you marry his family. But CLEARLY didnt sign up for this.

Coming in my house, SNOOPING in MY daughters room.....MY DEAD DAUGHTERS room. I dont mind if you ask to see her room with me or Michael in tout. Not just go help yourself. Thats what the biggest issues i have.....................................This is my house, if you want to see it ask for a TOUR!!!

You clearly walked out of our lives before. Why should we trust you NOW???????????

Sad but Happy moments!!

Today we had Michaels Birthday party, i did real good not to tell him.
                       Yes i am bad about telling people secret.

 

Michael was super surpised

 

Stetsyn wanted to help

 

Dezi smashed a cupcake in his face.

 

He enjoyed the presents so MUCH more

 

My Big Kid.....I would be able to survive without him

We had planned on including Kennedy in Michaels birthday. But as faith would have it, She had other plans. As of Aug.23 She was in heaven a whole month. 4 LONG weeks. But i know in my heart she was here today.....She alway was a daddies girl.   

Kennedy LOVES her daddy VERY much, he was the only one to get her to smile....EVER.

Mommy and Daddy love you VERY MUCH KENNEDY!!!!

Band-aids!!

Its funny know that i think of it....When i was prenant with Miss Kennedy all i wanted to buy was BAND-AIDS!!!!
 Anyone who knows me knows i DONT use band-aids.....put dirt on it it will be fine...My motto and popi's.

When you look at all the Mened heart pendet or CHD awarness pictures they all have Band-aids on them.

My baby had a CHD. and I  am Proud!! She was 1 out of 100 choosen to have a heart defect. DEFECT....its only a DEFECT if you look at it as one. If you look at it as YOUR CHILD WAS CHOSSEN TO HAVE SOMETHING NO OTHER CHILD COULD SURVIVE WITH. If you think "My child is stronger than any other child in there class".....IT NOT A DEFECT.
Awhile ago i was at an appointment in which they made me feel like I DID THIS TO HER, like Her heart was somehow my fault. People like this COULDNT handle a Heart baby. I was choosen to have this special baby, not that a "normal" baby isnt SPECIAL but i had an even MORE SPECIAL BABY.

Kennedy Fallyn was and still is a CHD WARRIOR!!!!

Kennedys Beads.......all that we remember!!!

This is a quick explanation of the beads Miss Kennedy Will receive

Central Line-- they moved it twice
PICU admission
Dialysis--to help drain off fluid
Emergency/ Unusual occurrence-- Heart stopped 7/8, Yeast infection in chest cavity 7/17
Infusion---- HOLDING OFF UNTIL WE ASK HOSPITAL(cant remember)
Pokes-- Countless blood draws(gases) we are going to say 22, IV 3 arterials( had to move it twice)
Surgery's & dressing changes  7 surgery's

• stints @ 2days old
• pulmonary bands 3 days old
• 7/8 emergency surgery- her heart stopped
• 7/10or11- Closed on ECMO
• 7/13 or 14- Took ECMO off
• 7/17- Opened due to Yeast infection
• 7/24- Closed

Dressing changes 7/17-7/24 at least 3 times daily(cant quite remember)
Test scans-- every time she had surgery at least if not more
Transfusion-(blood only) 1 every other day from 7/9(that we know of)
Tube insertions-- Chest, belly drain, 2 other drains (removal of all and replaces during one surgery)
Visits from Care team-- RT-countless.....at least 2xdaily, that we know of
Cardiac Surgery--2(stints and stint removal)
ECMO- 7/8--7/13or14

questionable beads

• Clinic visits--Mommy had visits with Dr Rob 3 times while Kennedy was inside(locked up)lol
• Learning meds...Daddy learned all her meds what they were, when to give, how to give, what they were used for

6weeks for 3weeks

Happy what would have been 6 weeks!!!!

But on a better note you have been in Heaven for 3weeks!

Hope popi and pawpaw are treating you well.

If not find grandma Vega and she will get'em.

Uncle Ducky love animals.....bring him a frog or two.

Help mommy know what to do.

Mommy feels lost without you.

Guide me

Hold my hand like we held yours.

We LOVE you and MISS you Monkey girl!!

our story

One year ago I was planning a wedding.

One year ago I was planning a wedding not because i was pregnant.

One Year Ago I was Planning a wedding to my BEST FRIEND.

In 1 year I have gone through Trials and happiness. I Thank God that i have an amazing Man to walk beside me. I got married and 2months later we found out we were having a BABY. Then when we went in to find out the sex of our little one, we found out that our LITTLE GIRL had HLHS with the possibilty of MVS.

Then at 37 weeks our FAITH was tested. Kennedy Fallyn Is our daughter, She is perfect in every way. Her heart was broken. HLHS and MVS was our diagnoses. I thought we were all alone. I WAS SOOOOOOOOOOOO WRONG.

July 5th 3:28pm Our world Changed For the better. A 5lb 13.3oz baby girl was born with a CDH.

July 27th 3:28pm Our world was rocked AGAIN. Our Daughter was called home to join her Great-Grandparents.

Yet to come....Michael turns 26, Our First year anniversary, I turn 23.........Whatever our Heavenly Father want to give to US!!

To my Rock I LOVE YOU untill the end of time.

Starting over

A year ago in september, i married the most amazing man EVER!!!!

I love him more now then ever before. although We had/have a child with a CHD.. He gave me the best baby ever. No crying, no pain......JUST SUPER POWERS!! She joined a family that once was broken. She should US what it felt like to love someone unconditionaly. She helped me and michael realize that its ok to be weak and have fear. Now that i knew what it felt like to be "somewhat of a parent". I can see the flaws in the way my father has been treating me lately.

Its a two way street when you have an adult child, you have to talk evenly. you cant treat you ADULT child like a child when they are clearly 22 yrs. Its an even street. listening and talking EVENLY.

Dear Kennedy,
  Mommy and daddy love you very much. Uncle honey misses his cheerleader. Aunty Coley misses your monkey toes. Hope you are having fun with your popi and your great uncle ducky. See you later.

Love mommy

Maturity...state of mind or physicality????

And i am the one that needs to grow up!!!!

• HIM
• Hope that one day you will find it in you heart to love me. A lot of things have been said that not quite true. We won't even get into that. Just know that my door is always open to you. I wish there something I could say or do to make right. I never wanted you kids to get caught up on this. One day I hope we can sit down talk. I am not the evil guy people say I am. Neither is Bobbie!! Just remember our door is always open. I love you

• Me
• You made your bed now you must sleep in it. unfortenalty for you. You didnt want us caught up in this but yet you douted your parternity...you didnt want us to get into this but yet you say mean things about mom what does that mean about US GIRLS. you didnt want us to get into any of this but yet you are marring a girl that would be my sister had mom gotten pregnant the first couple of times you tryed. our right your not evil...but you have hurt me BEYOND what words can say. I DO MEAN HURT as in you can NEVER EVER take back. when you realize this and stop the pitty me act come talk to me untill then just stay out of mine and my husbands lifes.

HIM

No one is getting married and no one pregnant.. You guys never answer my text or call so in order for you to write back I have to get your attention-- you are making this to be all my fault and it is not all my fault-- did ever wonder why I give your mother everything-- here why when threw you kids under[...]one tells you get the fuck out of my life leave me the hell alone-- don't be mad at for getting the job done-- I love Bobbie she makes me happy what is so wrong with that??


Me

all i have to say.............REAL MATURE..............REAL MATURE..........i have a life i dont text back to alot of people dont feel so special. But still doesnt help how BAD YOU HAVE HURT ME..not mom....ME CASSIE DANIELLE....YOU HAVE HURT ME WORSE THAN LOOSING MY DAUGHTER...the daughter i grew for 9 month and only got 22 days with...you hurt me worse than holding her and watching her go to see popi and grandma....LEAVE ME THE HELL ALONE

Heaven Knows No Pain!!

Dear Kennedy,

   I am happy you are a happy healthy ANGEL. I know you will always be there to watch over me and your daddy.

Love your  MOMMY


So i supposed to stop "talking trash about HER"...............DO I EVER LISTEN???????

NOOOOOOOOOOOO

Last nigh i recived a text telling me my".........", will idk what to call him anymore. that him and HER were moving in together and planning a wedding....guess WE his OTHER family wasnt good enough. She said she wasnt "that type of woman" that made him choose. Well let me tell you he DID CHOOSE. not even 6 months have my parents been divorced and he desides the first woman he sleeps with is "THE ONE".

I asked him last night to date...screw around....anything just not her. FOR GODS SAKE SHE IS MY AGE.....HOW AM I GOING TO EXPLAIN THIS TO MY KIDS...............sorry kids your grandfather has a woman that could be your aunt, go ask him why???

You want to be with someone my age you WILL get treated like you are my AGE. Sad when i have to PARENT THE PARENT!!!! YOu made your bed now you have to sleep in it.

Untill you deside to grow up and see that. DONT TALK TO ME!! I NEED TO HEAL I JUST LOST A CHILD TO A DEFECT YOU OBVIOUSLY KNOW NOTHING ABOUT AND IF YOU DID YOU WOULD BE SO SELFISH!!!!!!

Marriage?????

Apperently my dad and HIS THING  are getting married....i guess she really is prego...............................................................................................................................................
.......................................................................................................................................................
..............................................................................................................................................................
..................................................................................................................................................
 MAKES ME FEEL LIKE SHIT!!!!!!! Not taking him away MY ASS. Your 28 for Gods sake marry someone your own age.

this is sooooooo hard for someone who REALLY WAS A DADDIES GIRL.


This is harder than looseing a BABY.

New chapter

I THINK....................................................

I am ready to start a new chapter. All of this morning stuff isnt just for me, I think i ready to either start the adoption process or thinking about another baby. You might think its way to soon, but Kennedy would want mommy and daddy not to have other kids. Now just to talk it over with my husband!!!!! WISH ME LUCK!!

Where do i go frome Here???

I don't know wither or not Kennedy will have brothers or sisters. She was our first and will always be our first. I want other children, I don't know weither or not i am Strong enough to go through this again.

ADOPTION????

Its an option, an option i have honestly wanted to try. Dont think i am giving up but yet giving another child a life it wouldnt have.

TRYING AGAIN?????

I want to but it freaks me out. I want a baby but i dont know if i could handle it again. I do know if i did have another heart baby,,,,,,I love it just as much as i do kenni girl.

Help me out yall. i need yalls advice.

Happieness

You wouldnt know it by the smile on my face. You wouldnt know it by the way i dress.

You couldnt tell by the way i walk. You couldnt tell from the way i turn my head.

Lossing someone doesnt have to mean they are gone, it just means they move UP.

I lost my FIRST BORN!!! I didnt just loose my head. I am stronger than you think. I can handle more than expected. I laugh not because i hide my feelings but to show i AM ok.

Laughter is the BEST MEDICINE!!!

Kennedy wouldnt want us to cry and only cry. She was a happy content baby.

Why cant we be happy and content???

I WAS CHOOSEN!!!!!

Last night, Me an My husband were disccussing our option...to try again or to adopt. And then i get up still thinking about it and then i read this. Another heart mom posted this and it made me wonder...was i choosen? Why me? If me then why only for 22day? Could i have had longer?  
ENJOY!!! ( i did)




Did you ever wonder how the mothers of heart babies are chosen?

Somehow, I visualize God hovering Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

Finally, he passes a name to an angel and smiles. "Give her a heart baby."
...

The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God. "Could I give a heart baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.

I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I am going to give her has a world of his own. She has to make him live in her world, and that's not going to be easy."

God smiles. "This one is perfect. She has just the right amount of selfishness. " The angel gasps, "Selfishness! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.

I will permit her to see clear the things that I see - ignorance, cruelty, prejudice -and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

 

 

 

 

Waiting for MY turn!!!

Today is not a good day AT ALL. On top of missing MY BABY, My dad has to have everything about him. Apparently we arent his.....biologically...well doesnt that suck knowing you raised 4 of someone elses kids.................WAIT isnt he doing that already his 28 year old girlfriends FIVE kids plus the possiblity of her being pregnant AGAIN. When do i get to be happy...Saying my "see you laters" to my 22 day old baby, then having MY dad say he isnt my dad. But he didnt like it a few years ago when his dad did the same thing. Then finding out that SHE might be pregnant...that just isnt far....i worked sooo hard and did nothing wrong and yet my dad seem to want to go that LOW and hurt me that DEEP.

I cant seem to catch a break. I want MY BABY.....just to love and give her kisses. Do all the litttle thing for her and with her. All i want is ONE baby and MY DADS GIRLFRIEND cant be happy with her 5.

I MISS KENNEDY!!! and i came to the realization that it wasnt me my dad wanted but her, now that she is gone so is HE!!!

My Little heart

This will be written in the veiw of Kennedy......


     I came to Earth, To help two people realize they are important and strong. My mommy loved me and talked to me and told me of my family. I really wanted to meet all of them but MY FATHER called me home way too soon. My daddy sat beside me and held my hand, He was my rock he told me i was strong....and I WAS. I went through so much, more than any person should have to. It hurt me to watch my parents go through this, but MY FATHER said he would help and guide them. I love my mommy and daddy soooooo much it hurt me to have to say good bye, but mommy and daddy didnt say" good-bye" they said "I'll see you later". That made me real happy that i get to see them soon. When I made it back to MY FATHER, he told me that i need to get mommy and daddies home ready. So as i sit up here watching my parents hurt and cry, I am happy to now that MY FATHER is guiding them and helping them through this process. I visit them often, i place my hand on their sholder and kiss their cheek. They dont know when i am there but i know my mommy feels it in her heart. I whisper in mommies and daddies ears that i love them and I"LL SEE YOU SOON!!