Dear: The Bump

The Bump recently posted an article "educating" readers about heart defects. After reading it, I was appalled at the lack of research done on their part. I proceeded to draft my own response and emailed it back to them. Sadly, the article does not allow for comments, or they would have gotten a quite lengthy one from me.

Here is my response to this article:
I am writing to say that the heart defect article you wrote is a disgrace to the heart community.( )
As a heart mom who lost her child to heart defects, I feel I am more educated then your so called "expert". You run a very popular and well read website, I would think that you would take the time to research your topics and put a visible effort into your articles. But it is blatantly obvious that your writer took no time, other then interviewing that "pediatric hospitalist" to look into heart defects and the true statistics and details. And I want to know why a pediatric cardiologist wasn't interviewed? Did you even try to contact one? 
The Bump is so widely read, I would think you would want to educate mothers the best way you can. Yet you pass off heart defects as nothing to worry about, they hardly happen, and when they do they're not that serious. Which isn't true!! You have the ability to reach thousands of mothers, new mothers, teen mothers but yet you do them a disservice by not fully educating them. These mothers could have read your article and read the multiple symptoms of heart defects and would know that when their child is nursing and breaks out into a sweat, that they need to call a doctor immediately. But you didn't! You have put baby's lives at risk with this article. You had the chance to make a difference and you failed. I strive everyday to educate pregnant woman and new mothers about heart defects and the test to detect them: pulse ox. I have made it my mission, after losing my son to heart defects, to help saves lives by spreading awareness. I would love to have the audience you do, but I don't. The fact that you do have such a large audience and have acted so lazy on such a important issue is heart breaking. 

I am going to go through each of your points and add to them, along with adding links and personal experience to show how little you have even touched on in this article.

The first thing you read is: "most congenital heart defects are not serious". This is completely false. If you had done your research you would have found that almost half of heart defects are serious enough to require surgery. (

Next you state that "most VSDs close on their own". This may be true but you failed to mention that the remaining require surgery to correct. My son's VSDs were huge and did not close on their own resulting in heart surgery. A VSD is a hole between the bottom chambers of the heart. No matter how big, that hole allows for blood to mix between the chambers. Oxygenated blood and blood that needs oxygen are switching back and forth between the chamber which can cause heavy breathing and a lower oxygen percentage in the blood. (
This can be detected by pulse ox, which I will go into more further on.

Next, the symptoms of heart defects. You only list two when in fact here are many more. (
-bluish tint to the hands, toes, or face
-heavy, labored breathing
-sweating on the forehead
-sweating during nursing
-nursing very often. The mother may think she is not feeding her baby enough because they are always hungry. This is because they baby can't breathe and eat at the same time and has to take breaks.
-extreme jaundice
-heart murmur
By leaving out these symptoms, you have endangered babies whose mothers have not be educated correctly by your website.

You also state that most heart defect symptoms show at birth. This is half true. Many heart defects show no sign and the baby is discharged to go home, only to die later without notice. Each of these links will take you to an article about a child who died from undetected heart defects. 

Every mother should know the symptoms of a heart defect so the chances of catching a defect early enough are higher. You have failed to correctly educate your audience on the true dangers of heart defects.
As for heart murmurs, some heart defects show a murmur as a symptom yet you failed to emphasize the importance of this. My son presented with a heart murmur, but his heart defects were life threatening. He would have died within a week had his defects not been caught. AGAIN, you failed to share this important information. Heart murmurs should be taken seriously as you never know what they could be pointing to. And no, not every doctor can hear the difference in a murmur. My son's pediatrician scheduled an appointment with a pediatric cardiologist just to be safe, not because he thought it was a "dangerous" kind of murmur.

You next mention tests for heart defects. Yet again you fail to mention the most important one and the one that every mother should request after her child is born: pulse oximetry. An echo, and EKG, and an xray are only done after a heart defect has been suspected. A pulse ox test can tell you, without needing a sign, whether your child has a heart defect or not. It is a little band a nurse will wrap around the foot and hand that uses a sensor to beam light through the blood and measure the percentage of oxgyen. When done after 24 hours of life, your chances of catching a heart defect are tremendously higher then if you had only gone by physical signs alone. AGAIN, my son showed no signs of a heart defect besides his murmur. This test is NOT mandatory in every state, therefore mothers NEED to ask for it. IT SAVES LIVES; something you failed to mention. If you live in Indiana, New Jersey, or New York; it is done on every single infant after birth, but the rest of the country runs the risk of missing a serious defect due to the lack of laws mandating pulse ox testing.
This paragraph is something you should of at least shared with your audience. It is a cheap, painless, and LIFE SAVING test every mother should know about.

Next, your numbers are wrong. Again. Heart defects affect 1 in 100 babies. ONE HUNDRED. Then again you push that most of them are not serious. Which is not true. A new study suggests they are more common then that:

Next, how babies get heart defects, you mention that some are "thought to be genetic". Most Congenital Heart defects are not genetic but there are genetic disorders that cause heart defects like Down Syndrome, Williams Syndrome, Di George Syndrome, among others.

You did mention folic acid, but not how important it is to take. This website also states that 1/3 of infant deaths are from heart defects. A statistic you should have shared along with the fact that heart defects kill more babies then all kinds of child cancers COMBINED. (

I am really disappointed by your "examples" of what other moms do when their baby has a heart defect. AGAIN, you pass it off as something little that shouldn't be taken seriously. You failed to interview mothers whose baby died in their arms from an undetected heart defect ( or a mother whose baby spends his whole life in the hospital, has three heart surgeries, then passes away ( I know this is a scary subject, but people need to know the truth!! Heart defects affect one in 100 babies, many of which need surgery, and someaz of which will die. It is common and can happen to anybody. The more we educate mothers about heart defects, the better prepared they can be to detect those symptoms themselves. We can save lives and we need everyone's help to do it.

You did not even touch on the incredible amount of resources out there if you want to learn more about heart defects. The March of Dimes is a great resource, but you failed to mention the dozens of others.

Then this is my own article I wrote for the American Heart Association. I am a volunteer at their West Virginia office and am working closely with them to have pulse ox testing mandated in our state. Corbin' Law will hopefully be passed within then next few years! 

As a heart mom, an angel mom, and a heart defect and pulse ox advocator, I would greatly appreciate a public apology for your lack of research and a newly written, well informed, and corrected version of this article to be posted. It is extremely disappointing for such a well respected website to take something so serious, so lightly. 

Sincerely, Ruth Caruthers
Mom to Corbin Walker, born February 20th, 2011- died May 17, 2011.

The Corbin Story

What do you think? Would you add something? 


I came to visit you today. I put a little green wreath above your headstone and a green ribbon. I'm not used to this; decorating your headstone. I want you to be included though, and not forgotten.
As I was kneeling down, I noticed the headstone behind yours. It's new. Too new. Another mother has lost a child. His headstone was decorated so nicely, I felt like I hadn't done enough.

My biggest fear, as I looked down on your name, was that you were cold.

It's terrifying to think that way. The first time it rained, I had an incredible urge to go to your grave and hold an umbrella over your headstone so you wouldn't get wet. It breaks my heart to think of you that way. I know you aren't there, but just the thought of your body....

Oh God.

Six months

Six months ago today my son died.

Six months ago today, my world was rocked into a different universe.

Six months ago today, my family went from four to three.

Corbin Walker was born after a full term, "normal" pregnancy. There were no signs of any problems during pregnancy nor after birth.
I seemed to be the only one, besides my mother, worried about his heavy breathing. "My first born never did it; it's not normal" I told the doctors. But they said it was nothing to worry about, "it's a newborn thing."
I was also stunned by his low birth weight. After having a 9 pound, 4 ounce firstborn, a tiny little 6 pound, 14 ounce baby looked like a doll. A tiny, red, wrinkled doll. Not to mention his incredibly awful jaundice. They said it was "normal" and he should clear up after a few days of nursing.
Little did I know, these were three crucial signs of the very serious problems he had.

Thankfully, Corbin did present one sign the doctors could not ignore. His heart murmur.

We were sent for an echocardiogram (an ultrasound of the heart) a couple days later. There wasn't a cardiologist present, but only a technician. She told she could see holes in his heart. We weren't given any other details, we were not told how they would be fixed or what we should do about it. We were told to wait another two days before we could talk to a cardiologist.

Not an easy night for two parents.

That Friday we finally met with a cardiologist and he was able to get a full look at Corbin's heart.
"You need to go to the ER immediately. He should have died when the umbilical cord was cut."
The next couple hours were only the beginning of a very long and hard journey.

Corbin was taken into the ER and put on prostaglandin to keep his aorta open. He was officially diagnosed with an interrupted aortic arch, along with the holes in his heart called Atrial Septal Defects (ASDs): holes between the upper chambers of the heart, and Ventricular Septal Defects (VSDs): holes between the lower chambers of the heart.


Notice the red blood mixes with the blue blood which is basically blood that needs oxygen is mixing with blood that already has oxygen.

Simply put: the plumbing is all wrong.

The large red artery at the top of the heart is the aortic arch.

Corbin's aorta was nearly blocked off. His blockage was downstream of the three veins at the top of the image.

We were told it could completely close at any second.

Once he was put on medication, the hospital called the Children's Hospital four hours away to ask for an ambulance. Once they arrived, they loaded Corbin up and took him back to the Children's Hospital to await surgery.

I will make a very long story short by saying Corbin spent the next 81 days in the hospital. He underwent three heart surgeries, one heart catherization, and countless xrays, EKGs, blood tests, and echos. His diagnoses expanded into multiple other heart defects, heart rhythm issues, and one genetic disorder called Williams Syndrome. This disorder was the cause of all his heart problems.
The doctors began to think he had WS after his first heart surgery when they could actually look at his heart and they saw his veins were thicker then normal. One test, and two weeks later, it was confirmed.

Three days before Corbin would turn three months old; his heart stopped.

It was two days after his third heart surgery. He was having a hard time recovering and the surgery was too much on him. The doctors had given me "the talk" earlier, they wanted to make sure I understood that he may not make it. I refused to accept their worries. I was confident and hopeful.
But in my heart, I knew he wouldn't make it.
That sounds awful but it's true. I knew. I knew we would never bring him home. I knew we wouldn't use the new bassinet we had just picked up. I knew we wouldn't need all the baby boy clothes from the Ronald McDonald house.
I knew.

But his death is not in vain.

After he died, I decided to do something about it. I buried my child, but I wanted to prevent other mothers from going through what my family did.
A woman named Kristine wrote a powerful story called Cora's Story, in it she talked about a test called Pulse Oximetry. From her blog I learned about the cheap, painless, and live saving test called Pulse Ox. It helps detect heart defects by measuring the percentage of oxygen in the blood. Most heart defects mess with the oxygen saturation within the blood so it is quite effective.
Something you also need to know: heart defects are the number one defect in newborns. It affects one in one hundred babies.
Not one in ten thousand; ONE in 100.
Kristine had worked so hard that she had gotten a bill passed in her state of Indiana making it mandatory for every newborn to be tested for heart defects with Pulse Ox.
I was inspired.
I could do that.

Since then, I have teamed with two other heart moms and we have made it our mission to spread pulse ox and heart defect awareness. We hope to have a bill passed within the next 5 years. We have gotten the full support of the American Heart Association and are working closely with them to get this bill passed.

But we can't do it alone. We need your help. We need you, the public, to show these politicians that we are not the only ones who care about newborns, heart defects, and pulse ox. We are asking everyone to sign up at You're The Cure to stay update on our progress, and when the time comes, to send emails to our legislators showing your support!
Together, we can do this.
Together, we can save lives.

Ruth blogs at:
and at:

You can reach her at:
or at: corbinsheart via Twitter.

Thank you for reading and please, help us save the lives of newborns!

This post is part of a blog fest
EC Writes

That will be you

I haven't been posting as much as I should. It helps me through this hard journey, but lately, I have been avoiding it. But today I came across a link to Faces of Loss sharing a story of a mother's loss and I understood. I related to what she was saying and I feel like I should share my story here.

It was before Corbin's last heart surgery. I was sitting in the living room of the Ronald McDonald house. I remember one of the staff came up to me and explained one of the couples had just lost their son. The couple was standing in the kitchen, saying their goodbyes to friends and the staff. I looked at them with pity, but no understanding. I remember the look of pain on the mother's face. The tears running down her face. Her son was five months old and had spent his entire life in the hospital. He had never once been home and his mother had never gotten to hold him.
That day she did.
The first time she got to hold her son, he was dead.

I remember looking at them, feeling pity and sorrow in my heart, hoping that would never be me.
"That will be you" I heard.
It was the voice of God telling me that I would soon be that mother. I would soon lose my son.

I ignored the voice. I brushed it aside, saying "No, he will make it".

But I knew. Deep down inside that I would be that mother. I knew that Corbin was never going to come home. God was preparing me for what was to come. I truly believe that.
It didn't make the pain any less, or the journey any easier. But it took the shock away.

In a way, I'm thankful for the feeling I had. That doesn't mean it hurts any less. That doesn't mean I don't miss my son every single second of the day. I would love to go back to the day we brought him home and live in that moment forever.
February 23rd. The best day we had together.

I don't know why I heard that voice. I don't know why I was given the feeling that he would never come home. But it helped me prepare, and for that I'm thankful.

Never forget

One of the harder parts of losing a child is incredibly speed at which time flies after they are gone. I feel like the world is on fast forward, and one day soon, no one is going to remember you.

But not today. Today is all about remembering and sharing and being there for each other. It is a day of love and memories. Today, time stands still.

Today I released ten red balloons in honor of a few babies that have left us too soon. I know 10 barely touches on the amount of children that leave us every day, but it felt good to say their names. They are not, and will not, be forgotten.

This balloon is in honor of my brother Elijah. He was a miscarriage years and years ago, when I was about 8. It was the first time I had ever seen my parents cry.

Here are the balloons, flying over our farm, on their way to heaven.

As part of my dedication today, I went by myself to my son's grave site. I tied his balloon to his wind chime stand, took a few pictures, and when I turned around to get my video camera ready: whooosh. There went his balloon! I couldn't help but laugh. Corbin was not waiting around for me to get my camera ready; he wanted to play with his balloon! I managed to get a few pictures before his balloon completely disappeared. I was a little disappointed that I wasn't able to do video the dedication I had in mind, but I felt like Peanut was there.

Miss you baby.

Make me a rainbow...

This evening, as I was headed to the grocery store in the pouring rain, "If I Die Young" by The Band Perry started playing. As the lyric: "Make me a rainbow, I'll shine down on my mother" starting playing, I sent up a prayer wishing to see a rainbow from Corbin. 
It wasn't 5 seconds later, when I looked to my left, there was a double rainbow!! I slammed on my brakes, pulled off the road, and scrambled to take a picture before it disappeared. 
As soon as the song was over, the rainbows vanished. I just cried and cried, thanking God for my short, but so meaningful moment with Corbin. It was so obvious that moment was meant for me and that is was sent from Peanut.
<3 <3 <3

We love and miss you Peanut. Thank you for saying hi. <3 <3 <3

I am..

I am an angel mom. You may not see it at first, but if you look closely it's clear.

I have your name on a wing around my neck.

I have a tattoo on my shoulder memorializing your life.

I have a drawer of sympathy letters I never open.

I have a box of programs from you funeral.

I have a chest with your first outfit in it. It also contains the other small, but meaningful things from your short life.

I have your picture in my purse.

I carry the scars of infant loss on my heart.

I am an angel mom.

October is Pregnancy and Child Loss Awareness Month. You may not see it at first, but you are surrounded by mothers and fathers who have lost a child. Whether it was a miscarriage, a stillbirth, or an infant or child loss; they are here. There are many and they all hurt. No loss is more or less painful. There is no such thing as "just a miscarriage". There is no time limit on the pain.
This month, I challenge you to reach out and listen to someone's story. Though it is painful, telling the story of our angel children helps us to remember. It helps us to spread their story so others will know you lived. Tell your story, be heard, and let your angel's story live on.

Pregnancy Complications - Every year in the United States:

875,000 woman experience one or more pregnancy complications

458,952 babies are born to mothers without adequate prenatal care

467,201 babies are born prematurely

307,030 babies are born with Low Birth Weight

154,051 children are born with Birth Defects

27,864 infants die before their first birthday

Share and be aware. 

Silent Sunday

October is pregnancy and baby loss awareness month. 

As part of Silent Sunday on Finley's Footprints, this is my photo representing infant loss.

There are no words needed. I love you Peanut.

Too young

Dear Corbin,

Today a little baby girl named Brooklyn gained her wings, as did a three week old named Hunter. I'm sure you helped welcome them and held their hand to ease their fear. Their family is so sad and scared; could you ask for some peace and strength to be sent their way?

I hate it when any child passes away. It's so hard to understand why they were taken so young, but I know they all go to a good place. Give Brooklyn and Hunter a hug for their families. I know you all are no longer in pain and that gives me a little bit of peace.

Love Mama

If you are reading this, could you send up a prayer, blessings, or just have a moment of silence for these and all children that are taken too young? Some pass from heart defects, others from abuse, others because they were born too early; but ALL were loved and are very much missed.

Written in Stone

Your headstone is here Peanut. Sitting strong above where you lay, memorializing your life and what you mean to us. 

I hope you like it. 

I love how it doesn't look like the rest of the headstones. 

I love, love, love the back.

I love that your grave is no longer unmarked. 

Rest in peace, my sweet one. 
Till we meet again. 

Love, mama.

Dear Corbin,

It's been three months.

Three months without you here.

Today was our annual family reunion. All I could think about was I should have had you with me. I should be showing you off to family members that only come around this time of year. I should have been holding the hand of a toddler while carrying you in my arms.

It effects me, subconsciously. I was grouchy and I blamed it on being tired. But I know the truth. I miss you. I'm mad that I don't have you around to show off. I'm mad that most of your family never got the chance to meet you.

I'm sorry. I don't mean to sound selfish. I would never wish you back just to have you around because I know that it wouldn't take away your disease. I would never wish for you to be back in my arms just to suffer through more surgeries and hospital stays.

So I'm sorry for this rant, but I miss you.

I recently won two pieces of artwork that are going to make up your memorial wall. I haven't started on it yet since I'm waiting on those to arrive, but as soon as it is finished I will show you what it looks like.

Till next time Peanut,

Love mama.
Corbin's Story was just posted on Faces of Loss, which is what it sounds like: A website dedicated to sharing stories from mothers who have lost their child.

I was anxious to get it posted and waited and waited. It took about two months but now it's up.

Now I just feel sad.


Ever since you left, my memory has gotten worse.

I don't know if that is part of grief, but it worries me how bad my memory is. Which also scares me. I don't want to forget anything about you. Somethings I try not to think about; like how you looked when you were sick. But I never want to forget how soft your hair was, or how you looked when the nurses shaped your hair into a mohawk.
I don't want to forget your tiny, wrinkly toes.
Or your gorgeous dark, blue eyes. Or the way you fell asleep in my arms the day of your operation, one arm cocked out to the side, snoring.

That memory makes me smile.

I'm scared because my memories are all I have left of you and I feel like they are slipping away.

Of moths and sunsets

I went to visit your grave yesterday Peanut.

It's quiet there. Peaceful; with only the hum of the highway in the background.

I feel the tug to visit you. For two months, I made sure to go every Monday and I'm sorry I haven't been keeping up with that.

As I was standing over your resting place, there was a small, white moth that fluttered near. A smile broke out on my face as I imagined it was you, coming to say hello. I watched as it came toward me and just barely touched my leg then flew on. I smiled, tears in my eyes, as I watched you fly away.

Thank you for saying hello.

I don't usually say anything when I visit. I just sit, and watch, and listen. Hoping to hear you or feel the wind blow through your wind chimes. I love how the sun filters through the tall pines and casts a warm glow over you. It's like God is smiling, wishing you a peaceful night.

I miss you baby.

I had, what you might call, an epiphany yesterday. I was looking down at the base of what will hold your headstone; imagining what you look like now. Not in the physical sense, but in the heavenly sense. I was sad, at first, imagining you in the arms of my dead relatives. But then I realized; you are whole now. There are no scars and there is no more pain. There are no more needles and no more beeping machines. You will never have to have another procedure or blood test. You will never need another surgery. God has healed your heart and you are whole.
It sounds silly, but it didn't really hit me till yesterday. I'm happy that you aren't in pain anymore. It was so hard to watch you suffer in silence.

So it's okay, baby, that you had to leave. I know you tried your hardest to heal and stay with us. I'm glad you got to meet your brother and that we had you home for those two, short days.
It's okay. I'm okay.

I miss you though.

Till next time, thinking of you always.

REAL Pearl in the Oyster

It seems someone has grabbed my old "" address. When ever someone Googles "Pearl in the Oyster Blog", their blog pops us.

The thing is, this "blog" is whack.

They "blog" about swimming pools. It makes no sense, it's like they started this blog to talk about nothing and take my old address JUST to get traffic. But when I go to the site, there isn't anything there. There are no posts, no followers, just a generic picture with a description about swimming pools. I don't understand.

Anyway, just thought I would put that out there just so people will know.
THIS blog is the REAL Pearl in the Oyster. 

Thank you!

In the world of blogging, it is a great honor to be asked to guest post on another blog. Your readers bring more traffic to their blog and vice versa! It is a great way to network and spread your message.

I had the honor of guest posting on a friend's website for Congenital Heart Defects. She is an amazing advocate who recently brought pulse ox screening to the state of Indiana. I am so proud that she has made this incredible step forward in saving lives in honor of her sweet angel Cora.

So take a moment to visit her site and leave some love!

A letter...

Dear Corbin,

I miss you. I hope it's warm where you are; I know you used to get cold in the hospital. I hope my grandma, though I never met her myself, is holding you right now. Please tell her I'm sorry she had to meet you this way.

I'm sorry you had to die so young. I had so many plans and dreams for you. I know that sounds selfish but I couldn't wait to bring you home and start our life together. When we heard you had heart problems I was devastated. It's not a feeling many people can relate to. The feeling you have when your dreams for your child are blown away. We were told with your heart problems you could never play football. That made us sad. Sad because we didn't want to tell you that you couldn't do it; we didn't want to tell you that you couldn't do anything. Our heart broke for you and the things that you were now limited to. We worried that you would feel left out from your brother and the things he could do. We worried that you might hurt yourself trying to mimick your brother.
Then when the Williams Syndrome diagnosis became real, we had new worries. We worried about your medical problems, the therapy you would need, the looks you would get, and the questions. So many questions.

It's hard to explain that feeling. That moment when you are standing over your child, waiting to help change his blanket and the doctor walks in. He's not the surgeon or even the head cardiologist. He asks if we have talked to the geneticist yet. I say no. He says "Oh, well he does have Williams Syndrome."

......."He does?"

That moment, right there, where you brain is processing what the doctor just said. In that split second there are millions of neurons firing, connecting, pulsing and sparking...only to get nowhere. I'm speechless. I don't know what to think or feel. You don't yet know the enormity of those words. You don't yet know how that one sentence will change your life forever.
Williams Syndrome.

One of my first thoughts was that it was my fault. "Oh God, what did I do?!" My mind races back through the past year, thinking of anything that could have affected my pregnancy. The birth control? The sleeping pills? The one half of a beer I had on July 4th? No, no, and no. They tell me it was nothing I did.
Which makes me feel better for a second, but the guilt crashes back. It's genetic, they tell me. Oh great, so it was my fault. It would have happened no matter what. It was in my genes; I passed it along.

And I'm sorry for that. I'm sorry this disease hit you so hard. After we learned more about Williams Syndrome (WS), we found a small but very strong and supportive group of mothers. They were able to give us more information and stories of their WS kids. It didn't seem so bad then. We could do this. It wouldn't be easy but you could thrive. You would need therapy and medications and maybe glasses. You might have eating problems, sensory issues, and it will take you longer to reach your milestones. You would always be on the small side, you would most likely have reflux, but you could live. You would also have a giant personality. You would be so friendly, and have an affinity for music. You would never meet a stranger and your blue eyes would have a starburst pattern. These we knew. And we accepted. We changed our mentality and our expectations to suit your new life. And we moved on.

There is no other option. We did what we had to do. If this is what is meant to happen, then we were ready.

Then you got worse.

Overnight, you crashed. You were doing so well, eating and breathing with low oxygen support. I was able to hold you, bathe you, and change your diaper. But that all changed. Your numbers bottomed. You had to be intubated. That awful vent down your throat to help you breath. I prayed that it didn't paralyze your vocal cords. Which now I remember, it may have. You never cried the same again. You were taken off formula and put on TPN. You were back on ICU status.

We were back to square one. But I still had hope. I still was optimistic that you could get past this. This was just a step back. They warned us this would happen, that we would take a few steps back but we would slowly make our way forward again.

Those steps forward never happened. You very, ever so slowly, began to look better but you were still on the vent and TPN. The TPN started to effect your liver. You started to get jaundice at three months old. Your hair fell out. Oh God. Your hair. It was so soft. I loved to brush it up into a mohawk. The nurses thought you looked so cute that way. Then it began to come out in clumps. The first time I noticed, my heart stopped. I was terrified. I didn't know what it meant. I had to concentrate on breathing while I looked for the nurse. I tried so hard not to cry. To me it meant you were getting worse. Although you looked better, your insides were getting worse.

I wish we would have waited. Just a couple more days. I regret that more then anything. I wish we would have put off your surgery just two more days so I could have spent more time with you. You were so beautiful. A chunky ten pounds, pink skin, and you were following us with your eyes. Oh baby...I'm so sorry. I second guess myself. Was the surgery THAT necessary? Did we really have to do it RIGHT then?

Who knows. I know why we did it that day. It was because you looked so much better. We didn't want to wait too long and you get worse. We wanted to do the surgery while we thought you could still handle it.

And you did. For a day, you handled it. I was told the first 48 hours would be the hardest. And you made it through the first night! I was so proud. I told the doctors I wasn't worried. He's gonna pull through. He's my fighter, my lion. I held your hand, smiling at you. I love you so much. Don't leave me.

But you did. It was too much and your heart stopped. I think about that day all. the. time. Was there someone in your room when your soul left your body? I'm sorry I wasn't there. I'm so sorry. The guilt is huge. Why wasn't I there!?!? Why couldn't I have gotten up a half hour earlier? Why did we take so long to get out of bed? I'm so sorry. God, I'm so sorry.

I wanted to tell them to stop. I knew you were gone. Your body was there, but you weren't. But I didn't want to be the one who said "stop." I didn't want that. So we told them to keep trying. It didn't hurt you. You weren't there anymore, you were in Heaven. You had already gotten your wings by the time we arrived at your room. If I had known that night was the last......I'm so sorry. I...can't explain the pain I feel from the regret.

They told me to hold your hand. To say goodbye. But you weren't there. I touched your hand, but it was so cold. So cold. I just cried and shook my head. No. No. No.

I'm so sorry.

Forgive me. Baby please forgive me. I love you so much and I'm so sorry. I'm so sorry....

Help save a life

Have you ever given blood?

I haven't.

I think it's about time I did. When you see the signs for blood drives, do you ever think where that blood goes? See here to find out. I know Corbin received 5-6 blood transfusions while he was in the hospital. They have a blood bank where they keep the blood and if that bank is empty...well thats that. There is no more. They cannot "make" blood, it has to be given by a volunteer.

A blood transfusion can save a babies life. And all you have to do is donate. Here is the story of a baby with cancer that needed over 50 transfusions. Without those transfusions, she would not have survived. Here is the story of a man whose rare blood has saved over 2 million babies! And here, and here, and here! There are dozens of stories.

If you would like to make a difference and help save lives, it only takes a little bit of your time, visit to find out more. You can search for a local blood donation center in your area, set up a blood drive, or set up an appointment to donate.

Here is a link where you can learn the different types of blood and who can donate to who. I personally, have 0 negative blood and I can donate to anyone. However, I can only receive 0 blood.

Your body can restore what blood you donate, something a machine can never do. What an amazing thing!


I just posted this on my other blog but I have more followers on here! Here is the link to our interview about Pulse Ox and heart defects. I, Michelle, and Kathy are working our hardest to make Pulse Ox screening mandatory in West Virginia. Check it out, share, and help share awareness!

You can help!

Support Team Jacob and the American Heart Association by donoting or joining the cause and walking! The cause is to raise money to help fight heart disease and strokes by encouraging a healthy lifestyle. Even if you can only donate $1 or $5, it brings us closer to our goal.

Click here to donate and here to learn more. Thanks!

New fear

Ever since Peanut passed away, I've gotten more protective of Colt (16 months). Not bubble-boy protective, just more aware, more concerned, and hovering a little closer. I understand he is a boy and he's going to fall, get dirty, and put questionable things in his mouth. I am just painfully aware how precious he is. (which he always has been of course)
I know I have no reason to worry. But every single morning, if I wake up before Colt, I get scared. Heart pumping, thoughts racing, kind of scared. Colt has always been a good sleeper but now I imagine the worst.
"It's so quiet because he's not breathing."
"He fell out of his crib and broke his neck."
"He's dead because *insert horrible, far stretched scenario*."
The other morning as I walked down the hall to his room, still quiet, I was praying "please be okay, please be okay." He was, of course, okay. He heard the floor creak and started whining. But I was honest-to-God scared something was wrong.

I have always checked on him if he slept longer then usual, but now I'm terrified I'll walk in and find him not breathing.
And I don't think I'll ever stop worrying.

Don't ask

It's getting harder. I think when all "this" happened, I was in total shock. Now it has sunk in more: my child is gone.
It's hard for me to read about other children's surgeries. There was one where the mom was asking for prayers for her son's heart surgery. I couldn't say anything to her. I was just thinking "Good luck, that's the surgery Corbin had before he died". I can't say that to another mother! I can't be optimistic for other people, I just can't. I've been there and seen what can happen. Not all babies survive heart surgery and I'm not going to pretend they will.

Yesterday was bad. I think the interview brought up memories I try to avoid. I was also working on writing a condensed version of Corbin's Story for a book a friend is writing. It wasn't pretty. I was trying to type while bawling my eyes out. I was getting depressed which turned into anger. I was just in a mad bood all day; ignoring phone calls and texts. I just didn't want to be around anyone.

We don't even say his name. It's like if we say his name, then it all really happened. But if we don't, then it wasn't real. It never happened. He's just sleeping and we'll get to see him when he wakes up. I hate that I can't say his name.

I had a moment that terrified me yesterday. An old friend from middle school messaged me and asked how "my second child was doing." My heart started racing and my hands started shaking. "She doesn't know!?!? Oh my God, what do I say?!"
I didn't answer her. I couldn't. In my depressed and angry state I would have just told her "He died" then logged off. Let her chew on that. I'm not trying to be mean, I just don't have the "togetherness" to calmly sit there and tell his story all over again.
So I messaged her the link to my blog and left it at that.
She never messaged me back.
And I don't care. I don't want to talk about it. I don't mind if someone knows the story already, but I do NOT want to explain the three months of pain and suffering my newborn endured fighting for his life. I'm not going to do it.

I have no patience left. I get so angry seeing people complain about their child "driving them crazy" or that they're up past their bed time and won't calm down. I don't say anything, I just delete them off my page. I don't want to see it. I can't.

Cody came home early yesterday. He said he got really emotional and they sent him home. He just couldn't act like everything was okay, because it's not. We are not okay. I'm sure you are concerned and you are honestly sincere in asking; but DON'T. Please don't ask "So, how are you doing?". Don't ask me that because I'm also tired of lying. I'm not okay.
 So next time you ask, I'm going to say "No, I'm not okay. My child is dead and my heart is broken. What do you suggest I do?"

New address!

For those who have my blog link on their blog page, I just wanted to let you know that the address to Corbin's Story has changed.

It is now:

Thanks and happy Independence Day! We are having dinner and our own fireworks show, should be fun!

15 minutes of fame

Today a friend and I were interviewed by WVVA news about heart defects and Pulse Ox (read more here ). We were both so nervous and worried that we would forget something important or leave out something crucial in understanding Pulse Ox. Lucky for us, the reporter is a former classmate of mine, which helped ease the pressure level. We chose a casual spot in the park where a playset was dedicated in honor of Corbin.
An hour and a half later, we were done. We had both told our stories; all though very different, are both very touching. The reporter did a great job of pulling out the right questions to make me cry. I don't mind though, hopefully the interview will really hit home with viewers and bring a few more tears.
I'm so happy we were able reach out on such a big level to people. As I told the reporter, I just want people to hear the words "Pulse Ox" and remember that heart defects are a possibility.
1 in 100 kids are born with a heart defects. This isn't a small percentage we are talking about and by mandating Pulse Ox, it can help save lives. I told her if we help save one life, then our work has been sucessful.
If you are in the West Virginia area and you get WVVA news, tune in Tuesday night at 5 to watch our interview!

BIG thanks to Kathy, Michelle, and Kristine for all their hard work on Pulse Ox, and especially Rachel for interviewing us!


One hour of sharp stabbing pain later, I have an angel on my shoulder <3

Love you Peanut

Worst enemy

Part of greiving is the totally random, cannot be predicted emotional breakdowns. They hit me in the grocery story, while I'm in Zumba, driving down the road, and last night it was in the shower. I was thinking about Monkey's doctor appointment that morning which led to "did his doctor ever meet Peanut?" then me imagining the day I had Peanut at the pediatricians office then how he had to get his blood taken and how much he screamed and cried.
I realized with a schock that I don't remember what Peanut's cry sounds like.
Oh God...I don't want to forget. It was awful. I cried as the water was running. I cried as I got out of the shower. I cried as I got dressed. I cried as I climbed into bed.

It was such a horrible feeling. The guilt was overwhelming.
How could you forget your son's cry? What kind of mother are you? Didn't you love him?!

I'm my own worst enemy. God help me.

Shame on you

It has reached my attention that someone on Facebook has stolen money from a fund intended to go towards a sick preemie. This unnamed person was "helping" with the fundraiser, there were some "problems" with the paypal, and now a dear friend's daughter will not be receiving the funds.

This makes me sick to my stomach. SHAME on you. Deep, guilt ridden, twisted stomach, fear for your soul kind of shame. You are a low life form and I hope to be around when Karma kicks the tar out of your behind.

This is a warning: Do not trust all the fundraisers on Facebook. I apologize, as I helped spread the word on this particular fundraiser. I apologize more if you donated money, like I did. I can only hope that this will help spread awareness.

I'm going to go cool off now...there is still steam rolling out of my ears, I'm so mad.

A name in the sand

Thanks again to the Dudley family for filling my request. Cody and I are so appreciative.

If you want your baby's name written in the sand, visit this website. Keep in mind, they only take requests occasionally and the service is only for babies that have passed away. 

Help spread the word!

In an effort to get a bill passed in West Virginia to make Pulse Oximetry Screening mandatory, I and two other moms (Kathy and Michelle) have joined forces.
Kathy has a blog as well, and has covered our goals and links to helpful information here.

This is a very important cause to many people. 1 in 100 babies are born with a heart defect. This simple, non-invasive, and cheap test can save lives. Not all heart defects can be detected by this test, but it is effective in many severe cases and still very important. A quick diagnosis is crucial with many heart defects. Corbin had an interrupted aortic arch and if not treated within 4 days, is deadly.

Even if you do not live in West Virginia, you can help your state by visiting your pulse ox group on Facebook. (Here is a list of states)The more people who read this, the more awareness we can spread, and the quicker we can get Pulse Ox mandatory in every state. Maryland and New Jersey have passed the bill already, lets keep the ball rolling!
Here is a link to a petition targeted at all lawmakers in all states to show how important and how many people care about pulse ox screening.
*As of right this moment, the site is down. I suggest waiting till tomorrow to sign. Right now there are so many people trying to view it, it's not working. (awesome sign!)

If you know someone who is pregnant, pass on the word. Send them these links and help us educate others about the importance of Pulse Ox screening. Every baby matters. Its better to have heard the information and not need it, then to be taken by surprise.

Signs to look for in a newborn that may point to a heart defect are: blue feet or hands, extreme jaundice, abnormally heavy breathing, shortness of breath, having to take breathers when nursing, and a bluish tint to the lips, fingernails, and skin.
*extreme jaundice is not necessarily a sign. I only list it from experience and from hearing other heart babies suffered the same*

Don't forget: 20/20 is airing a segment on Williams Syndrome tonight at ten!
Here is the link.

It's okay

Yesterday I felt like punching someone. My poor husband got snapped at a few times, but he is good about realizing I need to be left alone.
All because of Facebook.
I came across two stories.
The first was of a mother who found out her baby had Williams Syndrome while still pregnant. My first emotion was disbelief. Then curiosity. Then anger. Anger at our local hospital for not catching Corbin's WS sooner. Anger at the ultrasound tech for not catching his heart problem. Anger at the hospital for not having an echo machine. Anger at every doctor that told me there's nothing to worry about. I wasn't mad at the mother or her baby; its wonderful they caught it so young so they can run the necessary tests to ensure the baby will be healthy. It just felt so un-freaking-fair that Willimas Syndrome was fatal to my baby. There are hundreds of other WS kids that never experience heart problems. Why did mine have to? He had a broken heart that the best Pediatric Cardiothorasic Surgeon in the state couldn't fix.
Then another mother posted about her son and his heart surgery. He had aortic and pulmonary stenosis, just like Corbin. He's now 11 and doing great.
This pissed. me off.
Again, I'm not mad at the mother or her child. Just the circumstances. How in the hell were his doctors able to fix his problem but Corbin had to die? I would never wish what happened to Corbin on any other baby. It was a long, painful, scary, and nerve wracking experience. But he had the same thing...why couldn't his doctors figure it out?
It broke my heart to read that.
The kind of heart break you can hear.
Another crack in my heart.
All I could do was stare at the computer screen, tears running, heart breaking, trying to understand why.

Fast forward a couple hours. I'm at my Zumba class trying to follow along. Yes, I'm new at this. Yes, this is only my second class. But damn it to hell, I'm the kind of person who wants to be good at something the very first time. I look at myself in the mirror. Sweaty, red faced, and looking like a sorry white girl trying to dance. I have two left feet. I cannot coordinate my arms AND my legs. I seriously have to concentrate, sometimes with my eyes closed, so I get the steps right. God forbid we have to move our arms and legs at the same time. Forget that. I just stop and watch the instructor till I can get it right in my head.
I get so mad that I can't get the steps right. I'm mad that I'm not perfect at this. I'm mad that the girl in front of me is skinny. And pretty. And knows all the steps. I'm mad that I even have to be here; that I have to lose weight. I'm mad at myself for not being in better shape. I'm mad that I have time to be here. I'm supposed to be home with my newborn. But I don't have a newborn anymore. I have a necklace around my neck with his name on it instead. I have the scars of a mother who had to bury her child.
So there I was, halfway through the class, trying not to cry.
I wanted to walk out.
I wanted to go out to my car and just cry.
But I didn't. I stayed. I finished the class. And I felt better afterwards, but that doesn't take away the emotions I felt.

I read about how other mothers grieve. We are all different. I am not depressed all the time, I'm not starving myself, I'm not letting the house get out of control. I'm the internal griever. I think about it. All the time. Constantly thinking, re-evaluating. I go over scenarios and think what-ifs. I don't cry every time I see a baby. I have triggers that set me off.
And that's okay. I'm not supposed to grieve like everyone else. It's okay if I am able to visit my baby's grave without crying. It's okay if seeing his baby outfit does make me cry. If you are grieving, don't feel guilty for not doing something you feel you are "supposed to". I feel like that all the time but I have to remember that it doesn't make me less of a mother. I still love my baby. I miss him constantly. I am always thinking about him and wondering what heaven is like.
He knows I love him.
He knows I miss him.
That's what matters the most.


I'm so excited.
A fellow heart mom posted a link to a blog. The blog is run by a couple in Australia who, periodically, take requests from mothers of angel babies. They take the requests and write your baby's name in the sand at the beach at sunset, take a picture, and email the jpeg to you.

They started the idea after their own child was born a stillborn. The mom had a dream she saw him on the beach and as she got closer, she could see where her son had wrote his name in the sand. The next day, she went down to the beach to write his name and take a picture.
They have been doing it ever since.

Corbin is on the list.

I can't wait to see his name written. It's going to be beautiful!

A break from words...

I was going to write a depressing cliche about how sad I was yesterday, but every time I read back through it I wasn't "feeling" it. It just sounded forced.

So here instead are some pictures I took around the farm.

And of course, I have to add this...

Happy Tuesday!

Red balloons

When you wake up on the day of your baby's funeral, it helps to be very busy.
Busy getting ready, busy wrangling a toddler to the babysitters, busy doing whatever you can to keep your mind off the fact you are burying your child today.
That morning was a madhouse. I remember feeling very stressed. Stressed that we had forgotten something. I wanted the day to go smoothly. Perfectly. Quickly.

When we arrived at the funeral home, I was surprised by how many people were there already. Rachel sticks by my side as I greet people. My dad had arranged a video to be shown. As he popped the DVD in the TV: it didn't work.
So my dad and my brother run to Radio Shack to get a cable so my dad can run the DVD on his laptop to the TV.
I'm stressing out that it's not going to work. I so desperately wanted people to see this video. I wanted people to be able to see Corbin, how he breathed, how he sneezed, how he looked before any hospitals. I wanted people to see the baby that I knew.

Turns out, my dad put the wrong DVD in, so once we switched it out for the correct one, it worked just fine.
Everyone arrives, so the preacher starts.

He begins with Psalm 23. It's not my favorite verse, but I appreciate what it is saying. I don't really pay attention to what the preacher is saying anyway. I am looking at the pictures surrounding his casket. Daydreaming about how things were before any of this happened. How small he was the day he came home and how his car seat was way too big. I thought about how tired I was from all his early morning feedings, and looking back, I should have cherished those quiet moments we had together. I felt guilt for not realizing how special those three days were until now.
I stare ahead, lost in thought.
He goes on to say a prayer, then some preaching. I remember thinking: "He sure is on a roll", but I didn't mind. I was in no hurry to go to the graveyard.
Then it was time for the video.
I break down immediately. I don't try to keep it in. It hurts to watch the video but at the same time, I love watching him. I'm taken back to the moment those clips were taken. I remember the first time I got to hold him, his first sneeze, and how it was 4 in the morning when I recorded that video.
I don't look around, but I can hear sniffling and crying.
I think: "Good, I hope they cry."
I want people to feel my pain. I find a twisted sense of pleasure when I hear others taking it hard. Let them cry.
The video isn't long enough. I wish I could sit there and watch it over and over. I'm not "here" when I'm watching it. I'm back with my baby, before he was in pain and broken. Back to when he was home where he belonged.
Cody and I are holding hands. There aren't any words for what we are feeling.
There is another prayer, then the song.
I only wanted one song played. I sung it to Corbin when he was in the hospital.
You are my Sunshine.
Have you ever listened to the whole song? and actually listened to the words? It breaks my heart. I hear more crying, more sniffling. I can only hold Cody's hand tighter and we both weep for our son.

After the video, the service is over. There will be no open casket. I don't want people to see him like he is now. The last time I saw him, he was very swollen. The funeral director told me it's nearly impossible to get him to look like "normal" so I declined a viewing. I don't understand why people have viewings anyway, they are just morbid and depressing. There's no need to make this day any worse.

I quickly make my way outside and into the truck. I don't stop to talk to anyone, I don't make eye contact. I just want to be alone.
We wait for people to get into their cars, then pull into place behind the funeral car. I can't stop thinking: "Our baby is in that car."
Cody tells me to stop thinking about it.
The drive to the graveyard is very long. A long 15 minutes of watching the car in front of you carry your dead child to be buried. A long drive to think about how you got here; about the chain of events that led to this day.
A long drive to think.
My hands are shaking. I don't know what to do with them so I wring them together. I'm unaware of what others are doing behind me. I'm watching two of Cody's friends pull my baby's casket out of the Hearse. I keep praying: "Please don't drop it. Please don't drop it."
They gently place his coffin in place. There are chairs sitting in two rows. A green canopy overhead. A bunch of red balloons are waiting to be released.
The preacher says a quick prayer. The family each puts a red rose on his coffin, then everyone groups for the balloon release.
It takes a couple minutes to untangle them all. I feel irritated that the balloons are tangled beyond measure. What idiot put these together!?
Finally they are all passed out.
Cody tells me to say something. I tell him no, you say something. He tells me to go ahead. By now I want to smack him in the face. I don't want to say anything because I know I will cry. Frustrated, I begin.
"We are releasing these balloons in honor of Corbin's Williams Syndrome and his...."
I choke up. Crying. I was going to say "heart defects" but I couldn't get it out.
My mom counts down from three.
The moment of the release is beautiful. I feel an immense surge of joy, watching the balloons take off. I can't find the words right now to describe it. Just the motion of letting them go and watching them sail into the heavens was perfect. It wasn't closure, it was more like a gift. My gift to my child. It was like I was saying "I'm letting you go but I'll never forget."
I'll never forget you Peanut.


Grief is a very unpredictable thing.
One moment you are laughing at your firstborn and the way he walks around with his hands in the air....the next you are crying because you just remembered your angel child will never do that.
I was told by a friend that it sounded like I was in the "anger" stage of grief.
I do not disagree.
I googled it. Found the stages on a website and thought I would share a piece:

"During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful.
Yet denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest "looking on the bright side," or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place."

I chose this section to share because I believe I am "stuck" in the guilt part of grief.
I feel guilty for not crying all day, every day.
I feel guilty for laughing.
I feel guilty for not visiting my angel baby's grave today.
I feel guilty that I'm not wallowing in a dark, depressing pool of sadness and tears.

Guilt is not listed as one of the "steps of grieving" but it should be.

Today, our area got hit with a pretty nasty storm. I drove down the road a mile or two to go pick up some drinks. As I was driving and watching the incredible power of a thunderstorm beat upon my windshield, a thought drifted into my mind.
What if I drove into the middle of the pasture, stood on the roof of the car, and reached my hands up toward the storm? Would I get hit by lightning? Would it be such a bad thing? I would see my baby again....

Now I realize this is an awful thing to say. No one should ever admit they have thoughts these things. That is what our society tells us anyway.
So I feel guilty for saying it, for feeling it, and most of all, for putting it out there for others to read. But I think it is important for me not to hold anything back.

So back to what I started out saying: Yes, I'm angry, but most of all I feel guilty. I think about it all the time. Things I should have done, would have done, could have done. 

I know it's too late...but guilt knows no timeline.

The little things

Today, I went to Wal-mart with my mother. We were chatting on the way there and she asked: " So, how are you doing through all this?"
Such a weighted question.
I tell her, "It's the little things that get to me."
Through out the days, I'm not drowning in sorrow; it's more like I have this constant, never ending feeling that something's missing. Of course I know what it is, but it's a shadow that follows me around.
Just a second ago, I was watching a video a friend messaged me and on the right of the website was an ad for cloth diapers.
I was planning on using cloth diapers with Corbin, seeing that reminds me of what I had planned and how now I don't have to do it.
The other day I went to Wal-mart and as I was checking out, I could see into the photography room where a family was getting their pictures done.
This, again, reminds me that I had planned on getting Corbin's pictures professionally done when he got out of the hospital.
I'm reminded how now I don't have to set up appointments for physical therapy, I don't have to schedule another hearing test, I don't need the four boxes of newborn diapers in the guest room, I don't need the blue bassinet in the bedroom, I don't need the baby bath, I don't need all the hundreds of baby goes on and on and on.
I am reminded every day on what I no longer have to do, what I now have time for; well you know what? I DONT want to have time to work out, I DONT want to have time to go grocery shopping. I WANT my baby back. I want to be busy and hungry and sleep deprived.
Instead, I take care of my toddler but nothing else. I'm not swamped with two kids under two. I don't have to lug a toddler on my hip while balancing a diaper bag and an infant car seat. I don't have to get up multiple times during the night to nurse my newborn. I get a full nights sleep with no interruptions.
Like I said, I have a shadow. A shadow of Corbin following me around, reminding me of what all the plans I had. The photos, the outfits, the playdates.
No more.
No more plans, no more schedules.
I have all the time in the world to think about him.