Riley is my life, so is my other kids. They are all so important to me but sometimes I wonder, do I do enough with my heart healthy kids as I do with my CHD kid? So many times I sit and think, and I neglecting my other kids? Do they understand why Riley needs more time than other kids?  The end of May, Noah one of my heart healthy kids had his tonsils and adenoids out.  One night we were talking and he said “so I am having surgery like baby Riley?”  ” Am I going to have to fly away and they fix my heart too?”  “That’s surgery”  I just explained about the types of surgery but it was then I realized even more that CHD affects the siblings just as much as parents.  We somewhat understand but kids don’t.  I decided to sit down with my other kids and explain Riley’s situation and some friends of ours with heart babies.  Of course my older one gets it but the younger are still apprehensive of doctor visits for Riley because they think I am going away with Riley to have more surgery.  I know they will understand one day but it is so important to explain to your kids CHD’s.  I have realized that CHD affects EVERYONE in the family.  Not just me, or Riley, but my kids too….

Lord, please watch my child today,
And let him know your here,
Give him strength so he can fight,
And calm his every fear.
Wrap your arms around him,
The way I wish I could,
Remind him just how much he’s loved,
Remind him life is good.
I feel so very helpless,
Not sure what I can do,
I cannot even comprehend,
The things that he’s been through,
Give me strength to fight for him,
And help me understand…
Help me to accept your will…
No matter what the plan.
Lord, I know you’ll answer me,
And yes, I know you care,
Thanks again for hearing,
One father’s heartfelt prayer.

If someone stopped to ask him,
Are things going alright?
He’d feel no need to mention,
He didn’t sleep all night.
If we were given just a glimpse…
If we could see in part…
What thoughts and hopes are there to find
Within this father’s heart?

A father’s perspective….

My child has a heart defect,
Its “my job” to be strong,
And tell my wife things will be fine,
(And pray that I’m not wrong)
And still the bills need to get paid,
And things need to be done,
And it’s so hard just sitting here,
“I want to hold my son!”
I lean down as I watch him breathe,
“Keep fighting”, is my plea,
“I thought I’d teach you to be brave,
“But son, you have taught me”.
I hear the beeping of machines,
(They help my child live)
I wish that I could take his place,
(There’s nothing that I wouldn’t give!)
To have the faith and strength I need,
To hold back all my tears,
To say I know he’ll be okay,
Despite all of my fears.
I”ll only lose composure,
When no one’s here to see,
I will be the “strong” one,
As I’m supposed to be.
A daddy says,” Come to my arms,
I’ll chase all those monster’s away”,
I cannot change God’s plan for him,
But I can hope and pray.

A daddy needs to cry sometimes,
And God must see right through,
That ” tough daddy exterior”,
For He’s a daddy too.

~Stephanie Husted

Hello everyone! My name is DeAnn (Dee) and my husband’s name is John. We have a healthy son Lane that will be 11 yrs. old in April and we also have our son Lex who is 19 mo. old and was born with Complex Congenital Heart Disease & Heart Failure. He was born with 5 major heart defects which are:
1) Correceted Transposition
2) Two Ventricular Septal Defects=holes in heart.
3) Ebsteins Anomaly
4)Almost interrupted Aortic Arch w/ very small aorta
5) Patent Ductus Arteriosus = (left over blood vessel)
Lex was born June 13, 2008 and was a picture of health! The pregnancy went great! No problems at all! He weighed 8lbs.10oz. & was 21″ long! He had perfect coloring, was eating like a pig and did not show any signs at all to be sick in anyway. He passed all test they had given him and then LITERAALY 20 minutes before we were to leave hospital with him, our Pediatrician came in and did her check on him and caught a heart murmur. She said a specialist needed to just check him out before we left with him just to make sure what was going on with the murmur.
Our whole world changed when in walks the specialist cardiologist and explains to me how very sick Lex really was!
Ofcourse you just nautrally assume that we have had one healthy son, why wouldn’t we have another one. We rarely ever drink and we do no drugs at all, so logically, I think we all “just assume” our children will just be healthy.
My husband and our other son had gone back home to get the base to Lex’s car seat that we had forgotten to bring to hospital. I do not even remember sitting down at all as the doctor explain to me that Lex was seriously sick and had we taken him home, he would have not lived overnight!!
Lex has had 2 open Heart Surgeries,had surgery 4 days after last open heart surgery, to have
pacemaker put in, has been life flighted 2 times, and also has had to be put to sleep & have his heart stopped & then restarted due to Atrial Flutter attack that pacemaker could not stop and that they could not stop either at pacer Clinic at hospital.
Lex is doing great and has been a true miracle of testimony for many CHD parents. Lex is now 26 pounds & 33″ tall!
He has been having trouble with the atrial flutter attacks a lot here lately, but pacemaker has jumped right in and corrected them! (ALL GLORY BE TO GOD!)
Doctors say that Lex will most definitely need
heart transplant by age 20 or before!
We are standing in COMPLETE FAITH that God gave him this heart and we know that in a blink of an eye, that God can make that heart PERFECT! A-men!?
If you have a child with CHD, please feel free to visit Lex’s page at carepages.com
His page name is heartoflex. ( All together & all lowercase.) We would love to hear from you and also follow your childs pages and progress! The more we all come together and the more we all truly stand in prayer and faith
for one another, is one AWESOME way we can support each other!
“With God ALL Things Are Possible!”
Matt. 19-26
PLEASE PRAY FOR THE TOTAL HEALING OF LEX’S HEART!

Yes, our daughter (Alex) was born almost 19 years ago. We have fought daily for her. We have gotten to know various families over the years whose children have CHD.

A little more than 3 years go w met Andy and Jennifer. Some mutual friends introduced us because their unborn daughter was diagnosed with HLHS and they thought we could provide some insight into what might be down the road. We told them what we could but no one can really prepare parents for what they are about to experience.

Their beautiful daughter, Hope, was born a little over 3 years ago with HLHS and other complications. She had a stroke at a young age which slowed her down. But she is now walking and has the best smile in the world. Usually a very happy litle girl. She doesn’t talk yet but she can light up a room. Our families have become very close and we seem them multiple times a week.

Little Hope has had the Norwood – Glenn – Fontan already.

This week Hope went in for a motility test due to her feeding troubles. During the test something went wrong and the next thing you know Hope was intubated and in PICU. We visited Thursday (1/28) and things were getting worse quickly. She was on 100% Oxygen and her sats were in the 60s. Echo, X-Ray, talk of ECMO (which she has been on before), etc. Thankfully she turned a corner and stabilized. Sats climbed back into the 80s.

So, as friends, we wait. We wait for the next text message, phone call, CaringBridge update. We will go back to the hospital today to be supportive.

What’s the point of this Blog entry?

18+ years after my family went through all of this children are STILL being born with the exact same issues year-after-year. It is frustrating. Yes, medical advances have been made with some surgeries, etc. But nothing that dramatic has changed in all of those years.

I am so pleased to see so many families out there on Twitter, Facebook, etc…trying and wanting to make a difference.

Please keep up the good work and we can make a difference. It is going to take time and we can’t give up just because we have been battling this for 18 years or more. This is our life and we will continue to fight for our kids. Keep telling your stories for awareness. Keep helping families who are new to CHD. You ARE making a difference one day and one life at a time. 

CHD Continues – with Hope!

A rememberance, dedication and awareness to the Angels of Congenital Heart Defects

thank you Jessica Goffard as a CHD Survivor and Advocate, you bring and inspire so much

Second letter in a series of open letters I am addressing to my heart.

Why am I drinking this nasty medicine? One of the many thoughts of my childhood. One of my first memories, my mom telling my friends mom how I take me medicine, because I was spending the night.  One of my first memories, echo’s and EKG’s. One of my first memories, mixing medicine with orange juice to try and make it taste better. It never worked.

My name is Jessica and I am 20. I was born October 3, 1989. A few hours after my birth, my mom was trying to nurse me when she realized I wouldn’t wake up enough to eat and I had a blue tinge. The nurses of course, where just telling my mom that she wasn’t doing right, that she didn’t know how to nurse. But my mom had a baby before. My older brother, so she did know how to nurse. And she threw a fit until the nurses believed her. The nurses woke me up enough to make me cry, and I turned blue. That’s when they new something was wrong. Shortly after I was diagnosed with Tricuspid Atresia, VSD, ASD, and MVP. That’s where my adventure began. I had my very first ambulance ride when I was just a few hours old. They took me from the hospital in Joilet Il. up to Chicago. My parents stood together and watched them take me away.

My first surgery was a shunt at 3 months old. My second was a shunt at 9 months old. I also had a procedure where the took a balloon and made the holes in my heart bigger. I was suppose to have my first open heart (the fontan) at three, like most children. But I am different. My body is constantly trying to heal it self. So at 1 1/2 my fontan was done. After that it was cardiologist once a year. Other doctors more then most children, because I was very prone to Pneumonia. Medication every day. Holter monitor once.

I remember the day I got my holter monitor, the next day I had school. It was second or third grade. My mom wrote a note to the teacher just to let her know what it was so she wouldn’t say anything. But nope, she told the whole class and asked me to stand up and show them. I said no, she she had them crowd around and look at it. I felt like a zoo animal.

Other then that my life was normal. For the most part. I had stress tests, and home work, medicine and friends, notes from the doctor to not run at school, yet I still had gym.

I had a lot of tests on my stomach because they thought the surgery messed it up.I also had sleep bradycardia.

Hot weather was always a problem for me, but when I was 16 it started to get worse. I got rapid heart beats pounding headaches and nausousness just from walking. Walking from room to room was a big no no unless I really had to. Yet I was in between cardiologists and at the moment didn’t have one a liked

When I turn 18 I moved out on my own. I loved it.  Then 2008 came. I found a good cardiologist that I really liked who told me I had Atrial Fibrillation, and my heart was dilated and pressed up against my breastbone.  Shortly after I turned 19 my cardiologist  recommended me to a different cardiologist. That’s when all the tests, MRI’s, bloodwork, echo’s, Ekg’s and heart caths began. And in december I found out I needed another surgery.So i had to move in with my mother again.

July 24 2009 I had my surgery. I had the fontan revision, part of my heart removed so it would no longer be against the breast bone, the maze procedure to fix the atrial fibrillation, and a pacemaker implantation because of the maze procedure. After word I had tachycardia, and was suppose to get a cardioversion.  We set it up twice and each time it couldn’t happen. After a day in the ER where they tired to stop the rapid heart rate I got a pill to help with it.

And now here I am. I’m Jessica. I am living on my own again, but everyone is paying my way. And I feel horrible. Surgery has brought about a lot of things. Like depression, nightmares, but also, a new appreciation for life. Its been 6 months, and the depression is still here. I am lost on what to do with myself. At the moment I am fighting for disability, so there isn’t much to do, but I will figure it out.

This is a poem that I have on my blog (http://browniebitez.blogspot.com) and I just love it. It’s written by Stephanie Husted, an amazing heart mom and poet. I hope you all love it as much as I do!

A Mother’s Perspective

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.

What is it like to have a child with a CHD?

It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.

It’s watching him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

This evening we are extremely blessed to be celebrating our son’s 10th birthday. While most birthdays are special days, today is a special milestone for our family.

Ten years ago I was in labor with my first child. We expected a healthy baby and were excited to get through the delivery and take our “normal” baby home.
Life didn’t quite work out that way. 36 hours into labor my OB decided it was time for a csection. Not the news I wanted to hear, to say the least. But knowing I would finally meet the baby I had loved for the past 10 months made surgery more acceptable.

Half hour into surgery we heard the words, “It’s a boy!”. A few minutes later I was given a quick peek on the way to the warmer: lots of dark hair, attentive eyes, beauty beyond description. But something was wrong. our baby was quiet and turning blue.

The next memory I have was that of asking if my baby would cry and why he wasn’t pink. We were told he was being place on oxygen. At that point my blood pressure sky rocketed and I was sedated.

I remember ‘waking up”in recovery and being aware that our pediatrician was standing near me holding a box of kleenex.

My motherly instincts, a whopping hour old, kicked in.

Then we heard the words that completely changed our lives:

Congenital Heart Defect

“What??? What is that? That can’t happen to US!!!”

Denial, anger, grief overwhelmed us for the next minutes.

Two hours later the diagnosis of Transposition of the Great Arteries (as I recall the “what huh? the what’s that???”) changed our lives again. But this time we had help , a diagnosis, and hope. Most importantly, we had hope.

Life hasn’t always been a walk in the park, but we have our son.

And tonight we have supportive family, good family, and a healthy son. We may have to live with CHD, but we aren’t running scared anymore.

Happy Birthday Sam!

hi everyone my name is aisling and im 36 years of age and from ireland im married to pat and have two sons philip who is 15 and aaron who is NEARLY 9.

Aaron was born on the 8th of april 2001 by a normal birth,i thought he looked blue when he was born and the nurses wrapped him in 2 blanket and a hat and siad some babies are cold when they are born.maybe it was mothers intution but i thought he idnt look right he seemed extra tired and slept all day neevr cried,aaron had a tiny little flat nose and i thought his breathing sounded funny ,i asked the nurse to see could a doctor check him out,the doctor came examined him and siad i think i hear a murmur i will come back tomorrow.so we were left there for the rest of the evening as i was so tired the nurse siad she would take aaron up to the nursery for a while i fell asleep and awoke to hear crying i knew it was aaron and i went up to the nursery and saw the nurse holding him and looking panicky aaron was blue and was being rushed ove rto icu.things happened kinda blurry after that we arrived at our ladys hospital crumlin the next day and aaron had echos ecgs etc then i just remember a tall handsome doctor coming ove rand saying those dreaded words “we there aaron has some congential heart defects we are getting a cot ready for him as we speak will you go back to the coombe (maternity hospital)and discharge yourself and come back here,aaron was 2 days old,talk about a blur after that doctors cardiologists liasilon nurses we met them all i kept hearing the words coartation of the aorta,they explained it to me but to be honest i never heard a word they siad,aaron will need a operation i was told he is very sick ,we must do this operation as soon as possible ,the next day aaron was in theatre i dont remember much then just collasping against the wall as my husband gowned up and brought our 4 day old son into the surgeons who would save his life,i dont remember the hours after or anything just seeing him coming up in the lift after the op,his eyes taped shut that brown stuff all over his body tubes lines the lot.aaron spent a week in icu as his little body found it hard to recover he was sedated and the docs siad that he also had aortic stenosis and biscupsid valve,things were looking bad for a while and i will always rem my mam bringing in a relic of padric pio she got off paddy doyle(a neighbour who was very religious) and we placed it in aarons tiny hand and we prayed and i swear i witnessed a miracle that day because within half an hour of aaron holding this relic his eyes opend and he tried to pull at the tube that was in his nose honestly i will never forget it

aaron in icu

 Eventually aaron was moved to the wards and he came on in leaps and bounds we brought him home after 14 long days and began to try to settle into normal life but it was filled with meds special feeds weight gains etc,aaron was sweeating when drinking his bottle and he was failing to thrive at his 6 month check the cardiologist siad they wanted to try a balloon cath to see could that stretch aarons valve for a while,aaron had turned almost black one day while crying and passed out once or twice,again aaron went in for his cath and we were back to hospital visits again.Aaron really started to thrive after that and he ahd a wonderful first birthday party which he fundraised for the hospital that saved his life.everything was going well but aaron without fail every 2 weeks would wake at night and start getting sick his temp would soar and he would gag/vomit up to 20 times a n hour he would go into a semi councis stae dribble and cry.we were in the doctors every week with him and im sure the docs thought we were neuortic,,but we couldnt explain what was going on only it was a pattern of vomiting sleeping etc that lasted a day or so,evntually when aaron was 3 he was diagonised with cycical vomiting syndrome a type of migraine of the stomach which now has turned into migraines which he gets a couple of times a year not as ofter thank god

Anyway after that life was ok it was getting good aaron started school and we went to his yearly check ups in 2007 the doctor siad he needed open heart surgergy within 6 months for subaortic stenosis,we were shocked as we believed aaron would need nothing until he was in his teens,he eventually had his surgery almost 10 months later(crappy healthservice) at that poing he could no longer go to school and slpept nearlty all the time.during this wait the make a wish foundation granted aarons wish to meet the liverpool football team and we went on a na amazing trip which we will never forget.aaron had his operation in jan 08 and we have not looked back since he has been so well and rarely needs days off school he is top of his class and an amazing little boy,loved by all that meet him,we go for yearly checks with our cardio team but we not sure what happens next its a wait and see he still has aortic stenosi and aortic and mitral regurgation so im not sure what happens with that but we are a strong family and will deal with whatever life throws at us.i hope you enjoyed my story and i would love to help other families in my situation anytime thank you aisling a proud mammy to aaron and of course philip  who has watched his baby brother fight so much i love you both xxx