Reid

I was born with aortic stenosis or how ever you spell it, but I had my first surgery when I was 3 Days old later we went in again for another one when I was 6 Months old and finally the third one when I was 8 Years old, they did what is called a "Ross" procedure, where they went in and took out my aortic valve and threw it away moved my pulmonary over to my aortic side and gave me a donor valve that wont grow with me, soooo that means I will have to have another one, and God is the only person that knows when that will be. During the last surgery though I suffered a stroke and lost all fine motor skills to the right side of my body. After about a year of therapy i regained most all of it back... other than my hand writing skills. I am currently playing football for Wayland Baptist Pioneers, I am the place kicker, I have a Pilots license and I don't let much slow me down.

Katie

https://www.facebook.com/BabyKatieStory

Baby Katie is 16 months old. She has overcome every obstacle that has been thrown at her. With a lot of prayer, Katie has become our little miracle. She has taught us that there is always hope, even when all looks hopeless.


On 9-10-11, I gave birth to a beautiful 5lb 12oz baby girl. I chose the name Katie for her, meaning 'pure'

... When Katie was 6 weeks old I took her to the local hospital for a little trouble breathing. She stayed the night there for observation. After a quite night, the doctor came in and said he thought she was fine but was going to send her to Lubbock 'just in case'. I was quite confused by this but agreed. Katie slept through the 1 1/2 hour ambulance ride.

Once we arrived, we were taken to the children's floor but the monitors showed a high heart rate so we were moved to the Pedi ICU step down unit 'just in case'. Daddy (Gary) arrived about this time. They said Katie was in supraventricular tachycardia (SVT). The nurses couldn't get an IV started in a vein. We start hearing a drilling sound and questioned it. The horrible sound was them drilling a hole in the bone of my baby's leg trying to
gain access. They were finally able to administer the needed medicine to get her heart back into rhythm and things settled down.

Priscilla (Grandma) and Aunt Pam showed up. While Katie drank her bottle, I went downstairs to visit with my cousin who came. That's when Daddy called and demanded that I get back upstairs. Life as I knew it changed at that moment. SUNDAY 10-23-11 at 9:00pm.

When the double doors to the ICU open, I see Gary standing there, wide eyed. "She's not breathing". I rushed into her room and there lie my baby Katie. The nurse was doing chest compressions on her pale lifeless little body. I felt like I was kicked in the chest and the air from my lungs was squeezed out. The only sound that would come out was a shreeking 'oh my God'. Grandma kept telling me to sit down. I called my Aunt Dana to tell her that I needed her, I didn't know what else to do.

By this time, nurses and doctors were piled into the room. I heard the drilling sounds again.I heard Katie's sea horse toy singing every time they accidentally bumped it. While the staff desperately tried to revive my baby, Dad and I sat on the floor. He had my head cradled in his arms and he kept saying "it's not fair, it's just not fair" there were many tears and prayers flowing.
The doctors kept coming over to us, asking questions and trying to explain things to us. With a room packed with people, doctors yelling orders, commotion and panic filling the room, and the absolute shock and terror of what was happening, I couldn't even begin to process what they were telling me. I just said 'do what you have to do to save her'. One doctor came and asked if there anything she could do for us. I begged her not to let my baby die.

The ECMO team was called in. I was told that this was a heart/lung machine and it was a temporary last resort.

Once the surgeon arrived, the staff escorted us outside the door of Katie's room to some awaiting chairs. They brought us ice water and a Chaplin. I screamed that I didn't want a Chaplin. To me, this meant death. He didn't say anything. He just stood there so I said 'are you going to pray or something'. I figured he should make himself useful if he was just going to stand there. My thought process was not working at the time.
My Aunt Dana finally showed up and cousin slipped in so I finally had some of my own family by my side. I couldn't see Katie in the room because there were so many people surrounding the bed. As they were preparing to hook her up to the ECMO machine,

her heart started to beat ON ITS OWN.

This is after 1 hour and 45 min of constant vigorous CPR. HER HEART WAS BEATING! Everyone was shocked at this point, doctors included. It was 10:45pm

We were sent to the waiting room. Katie was unable to breath on her own so she was put on a ventilator. She was moved to the real Pedi ICU and got her 1st blood transfusion.

The doctor came and told us that Katie has Wolff Parkinson White Syndrome and Long QT Syndrome. In other words, her heart has 2 electrical defects. He said 'its like hitting the lottery twice'. It was the lottery that nobody wanted.

I remember seeing her for the 1st time again. There were IV pumps everywhere. The whole bed was covered in IV pumps and in the middle of all of them was a tiny pale baby. She was on an ice blanket to help prevent brain swelling. (CPR is hard on the body). Her skin was cold and felt and looked like plastic. She was so full of fluid and didn't even look like my baby anymore.

That night was touch and go. Gary and I were lost and scared. We were in and out until 4:00 am. We didn't know what we were supposed to do. At 4:00, we laid down on the cold floor of the waiting room and tried to rest.

Katie's kidneys shut down. She had critical blood pressure issues. Brain scans and heart strength were uncertain. They found a hole in her heart. We were given a 70% chance that Katie would have severe brain damage. We were just numb by this time.

BUT things began to change. Her kidneys began to function, they found no damage to her eyes, her liver was functioning / damage free, and her brain scans showed good brain waves and no swelling. After all of the trauma, Katie was beating all of the odds.

I'd slip in at night and would read Katie nursery rhyme stories. Gary and I would rub our hands together and put them on her legs to try and warm her up... when the nurses weren't looking.

On Friday 10-28-11, she was taken back to the operating room to place her pacemaker. It was such a hard moment to let her go. I rubbed the skin on her chest, knowing it would never look the same. Had blood transfusion #2.

Katie's heart got out of rhythm again after surgery so the wait was even longer. I was so glad to finally see her again. The ice blanket was gone and her skin felt so warm. Her whole chest was bandaged and a drain was coming out of it. The nurse lifted the bandage and there was a long incision down the whole length of her breastbone.

She was going to have a scar but she was here and that's all that mattered.

Monday 10-31-11 Halloween Day, all the IVs, tubes, dressings, wires, and ventilator were removed. We got to hold our baby again for the first time. Its was the most amazing feeling imaginable.

Katie spent a total of 1 hour 45 min of CPR, 8 days on a ventilator, heart surgery, 2 blood transfusions, horrible shaking /screaming medication withdrawals and 13 days in ICU. Today she is a happy healthy 16 month old baby. She has her pacemaker, takes heart medicine every 6 hours, and has the most beautiful badge of courage running down her chest.

I don't know what the future has instore but I DO know that God has provided us a wonderful miracle, 'just in case' you didn't already know.

We have so many friends and family that have walked this journey with us. At times they even carried us.

The Facts

https://www.facebook.com/#!/pages/Mended-Little-Hearts-of-Lubbock/483318488367808?fref=ts


CHD Facts & Statistics

What is a congenital heart defect?

• Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth.
• Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.

How common are congenital heart defects?

• CHDs are the most common birth defects. CHDs occur in almost 1% of births.
•  An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
Nearly 40,000 infants in the U.S. are born each year with CHDs.
• CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
•  Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
• Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.

What is the health impact of congenital heart defects?

• CHDs are the most common cause of infant death due to birth defects.
• Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
•  Over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
•  Surgery is often not a cure for CHDs. Many individuals with CHDs require additional operation(s) and/or medications as adults.
• People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
• People with CHDs are now living long enough to develop illnesses like the rest of the adult population, such as high blood pressure, obesity and acquired heart disease.
• CHDs are now the most common heart problem in pregnant women.

Facts compiled by the Congenital Heart Public Health Consortium.


What causes congenital heart defects?

• Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
• Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant.
• Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a pregnancy is crucial.
• A baby’s risk of having a CHD is increased by 3 times if the mother, father, or sibling has a CHD.

What are the health care access and cost challenges related to congenital heart defects?

• In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.
• A significant number of adults with CHD in the U.S. report having problems obtaining insurance and coverage for specialized care.
• Compared to the general population, adults with CHD have 3 – 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays.
• Fewer than 10% of adults with CHDs in the U.S. who need care from specialty adult CHD centers are receiving this recommended care.

 

Bodie

https://www.facebook.com/SmileBodie

http://www.hereigotexas.com/index.html

...Bodie was born with a Congenital Heart Defect, tetralogy of Fallot. The initial repair was not successful, and he had to have a stent put through his pulmonary valve for a blockage. He then spent 160 days in the hos...pital initially, had five cardiac arrests, was on ECMO life support, dialysis, had 16 surgeries, was trached and vented, got a g-tube and Nissen wrap, and had the majority of his right foot amputated. Christmas a year ago he suffered an anoxic brain injury from oxygen deprivation during CPR. After the brain injury, he a number of brain surgeries and procedures. He really *should* not have survived many of those things, but he's here, he has an incredible will to live, survive and thrive and he's rockin it, man!!! His life is all about therapy now and making as much recovery as possible from his brain injury.

He has since had the subdural shunt removed, been decannulated from the tracheostomy, requires no oxygen, and no longer has the g-tube. His vision seems to be improving and just very recently his gross motor skills seem to be improving. He's learning to crawl, holding his head up very well, is doing very well at standing with assistance, and is trying so hard to sit up. He's also become quite verbal and is starting to follow commands like, "Bodie, lift your head up!" :) Apparently no one told Bodie he has a brain injury, or that he couldn't do it!!!......... There Is more but you'll need to go to his page.

For More Please visit his page.

Kennedy

https://www.facebook.com/#!/Kennedyfallyn

Kennedy was born 7/5/12 @ 3:28pm.
She was born with a Congenital Heart Defect:
Hypoplastic Left Heart Syndrome and Mitral valve Stenosis.
... She had open heart surgery 3 days after being born.
She had good days and bad.
July 27th, 22 days after being born, She was called back to Heaven.
She caught NEC(renal faliure), Which is an infection of the intestines.
Kennedy was a very content baby, she never really cried.
She smiled ALOT. Kennedy was 1 of 100 children that is born with a CHD

I AM.....A HEART MOTHER

One day my world came crashing down,
I'll never be the same...
They told me that my child was sick..
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong..
It seemed my heart was breaking..
As, I'd loved him for so long.
I will not give up on this child..
despite your best "advice"..
I will give my child a chance..
No matter what the price..
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive!
And he'll needs lots of therapy?
And he just can't gain weight?
Alright God I can do this..
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed..
I watch him then, for quite awhile..
(I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why?
Oh Lord, I just can't know your ways..
No matter how I try.
And yet, I trust You hold his life..
(and guide us through each day)
My mind says savor each moment he's here...
But my heart whispers,"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good nights sleep..
to learning every med..
From... wondering will he be alright?
to watching him reach out his hands..
with every smile, my heart just melts..
(despite life's harsh demands)
For all who see that faded line..
I look to them and smile..
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..
(It's the door to his beautiful heart)
You must have known how much I'd love him..
(Just as You loved him right from the start)
A heart mom is always a heart mom..
(wise beyond all of her years)
And for those who have angels in heaven..
Our hearts share in all of your tears..
On Mother's Day I will remember..
You chose me for him(and no other)
And I will embrace that beautiful day..
When I became a "heart mother".

~Stephanie Husted

Some Bonds Cannot be Understood

Some bonds cannot be understood...
Unless you have walked them before...
A path that I would not have chosen...
A future I just can't ignore.
We've all watched our children intently...
Memorizing each line...
And let them leave our loving arms...
And prayed things would be fine.
We've paced the halls awaiting news...
And wondered just what lie in store...
We've felt our own heart's racing as...
We walked through an ICU door...
We've seen the child we love so much...
Struggling to overcome...
The lines...the cords....the monitors...
No thoughts...no words...would come...
We've prayed for an improvement...
We've laid it in God's hands..
We've cried...we've hoped...we've worried...
We've wondered of God's plans.
We've learned just how a heart works...
Each valve and artery...
We've asked alot of questions...
We've faced each surgery.
And somewhere down this well worn path...
We've met more families...
Who know exactly what it means...
To live with this disease.
We've smiled at every triumph...
And shared in every sigh...
We've prayed for a child that struggles...
And each family that must say goodbye.
Some battles are fought with bullets...
And weapons made for war...
While these are fought in silence...
Behind a hospital door...
We've wondered what lies in our future...
We've been thankful for just one more day...
We've stopped and watched with tear-filled eyes...
Our children...as they play.
We've struggled with ounces and weight gain...
Why won't my child just eat?
But heart mom's ...we're a tough group...
We've learned how to face a defeat.
We've faced those moments...others do...
When life has got us stressed...
But it doesn't take long to remember...
That we are richly blessed.
We've taken on a whole new role...
One we we wouldn't exchange if we could...
We know that life is difficult...
We hold onto all that is good.
God chose each of us carefully...
I do believe he smiled...
Some bonds begin with strangers...
And just one special child.

Xzavier

Well lets start off as I didn't know about his heart problem(which most moms sometimes don't), I was high risk my whole pregnancy because of thyroid problems. At 32 weeks I was admitted to the hospital because of high blood pressure, I ended up being released and put on bed rest till I had Xzavier. At 38 weeks and 5 days I went into labor at 10 o'clock at night, my fiancé drove us to lubbock and they admitted me since I was a scheduled c-section on Friday the 9th of March. They thought I was going to tie my tubes so said they'd take me back at 8am on the 8th, it was a misunderstanding about me getting my tubes tied so they pushed us back to 11am. At 11:15 they wheeled me into the OR and started prepping me, brought Ryan in at 11:30 and we had Xzavier at 11:54 am. As soon as they brought him to the table to clean him and weigh him, I noticed something was wrong. I instantly knew something was wrong, and I kept asking is he okay, and they kept saying he is fine he is perfect. So they took him to the nursery and I went to the recovery room. I was laying there waiting for them to bring him to me so I could try to latch him to the breast and do some bonding. My nurse got a call saying he was going to the NICU where he'd have to have a tube put down him to help him breath. I had no clue what was going on, so when I went back to my room and my family came in, I started asking what is going on and nobody wanted to say. Well Ryan (my fiancé) came into the room and sprung it on me, that he had to have surgery or he wouldn't make it. Well I started freaking out and my blood pressure shot way up. So when I finally got relaxed, my vassals could join back together to start clotting. So I ended up bleeding out, the nurses tried sand bags everything they could think of and it wouldn't stop. They called for more nurses and by time I knew it I had 10 nurses surrounding me at my bed, they called my dr and he came up. He looked at me and told me your going back to the OR, so he looked at the nurse's and said someone call OR and them to be ready stat that we are on our way. Scared to death at what was going on with me, I just kept thinking I'm going to die because I'm bleeding so much. Well it took about an hour to clean me up and etc. So when I came to I was crying for my daughter and they said I just kept asking for Xzavier. Finally at 1 am I got to go see my baby boy for the first time. I was an emotional wreck when I saw him. The next day at 8 am they took him back and did a 2 hour prep on him at 10 is when they started the actual surgery in all it lasted a total of 8 hours, it was the longest 8 hours of my life. When they was finished and sent him to recovery I got to go see him. They told us he wouldn't be going home for 3-4 weeks, I just started crying my eyes out. I went to PICU and loved on him and told him he was okay and he'd make it through this. That night he started opening his eyes to look at us. The next day they told us they was going to start taking him off some of the meds and decrease the oxygen. After 5 days of his heart surgery he was off of everything except the heart meds. At a week old he was released. He was home a week, and we got admitted again because he got staff in his womb. So they put a pick line in for his antibiotics and took him to the OR to clean it up. He was there another 10 days. I had to learn how to clean his womb and pack it. For a whole month at home I'd clean and pack it, and learn how to flush the line,until they took it out. But ever since then, he has been doing great, and I am so lucky he is alive. I am very blessed to have the Covenant Heart Doctors as the ones to do his surgery. The nurses and Doctors in PICU treated us as we was family. We love each and everyone of them. Xzavier is now 10 months old has two bottom teeth and his two top teeth are coming in,he is crawling, talking and pulling up on everything.

Thanks for reading/sharing my baby loves story.
Xzavier's Mommy ❤