You know Cyber Monday...
But do you know about Giving Tuesday? I blogged about this last year and the movement was huge! Help me to make it even bigger this year.
It is the Tuesday after Cyber Monday, every year, for you to choose a charity and pay it forward!
I hope you will consider The Corbin Story Fund. My non-profit created in honor of Corbin to spread awareness of CHD and pulse ox, to educate the community through projects and campaigns, and to provide a child loss support group for locals affected by child loss at any stage.
You can visit my supporting foundation's website to donate to The Corbin Story Fund here. Simply type in "The Corbin Story Fund" to have your donation sent to us!
Which charity is close to your heart that you want others to know about?
It was a big step for me, as I really avoided any group atmosphere because I never knew what was going to trigger my grief.
At first, I tried Zumba.
I hated it.
I was uncoordinated and it only made me mad to the point of tears. I stayed in the back of the class to avoid being watched too closely and I would have to stop, mid dance, and close my eyes, and just breathe...in and out...in and out...in and out..."don't cry"...
I would leave the class feeling physically annoyed and emotionally drained.
It was terrible.
So I tried working out on my own. Treadmill, elliptical, and weight stations. 15 minutes here, 15 minutes there, followed by another 15 minutes on the treadmill for cardio.
Needless to say, it wasn't working. I worked out almost 5 days a week, for three months and didn't
Frustrated doesn't begin to describe what I was feeling.
So one day, as I was doing my 15 minute routine, I saw this tall buff guy walk by and I thought "well, he obviously knows how to lose weight" and I stopped him, asked "What am I doing wrong?!" and explained my routine.
"Too much cardio! You need to take my Gladiator class."
What did I have to lose? So I did. And my first Gladiator was outside in the heat where I promptly pulled a muscle in my back and was out for a month.
BUT I did not stop there. I came back and I was hooked.
I loved it. I loved the group atmosphere, being held accountable if you missed a class, being yelled at military style "DON'T STOP WEAKLINGS!".
It was hard, I left every class a sweating, exhausted weakling. But I grew stronger, lost weight, gained so much confidence, and most importantly...it helped me work out my anger, my frustrations, my grief. Spending an hour, three times a week being a Gladiator helped me in more ways then I could have ever expected.
I made friends. Real friends that I know consider part of my close circle, people that I can confide it, and who actually show up to my fundraisers, to special events, and who put aside their own time to help me with my non-profit work.
Wednesday was the very last Gladiator class. I didn't realize how important that class was to me until it hit me that the last two years of being apart of that group, working out together and sharing that unique bond, was a huge part of my healing. There I was, sweating, surrounded by two dozen other Gladiators, tearing up, thinking "this is the last class". It was one of those moments that gives me chills when I realize the importance, emotionally, that something has had on my life.
To my Gladiators: thank you. Thank you for the comradery. Thank you for the emotional support you may not even realize you were giving me. Thank you Sarge for a great class and an awesome two years of Gladiator.
We were the first ones there, it was empty, but soon another car showed up with three kids. I watch as they all run towards the play set, Monkey not far behind them. The two boys are just a tad younger then Monkey, both blonde hair and the same smile.
I hear the mom call one's name, and I think "did she just say Colt? No."
I hear her call out to the other brother.."Did she just say Corbin? NO WAY".
I couldn't stand it. I had to ask.
"What are their names?"
"That one is Colt, and the other is Corbin. They're twins."
"You will never believe this, but this one is Colton and my other is Corbin!"
I could NOT believe it. Not only do I rarely meet another Colton, it has been almost three years since I have heard the name Corbin in person.
I kept asking myself, what is the meaning behind this? Is this some type of sign? What am I supposed to learn from this? This cannot be a simple coincidence...there is something I am meant to take away from this. I could analyze this for days, but I think I met those two little boys to catch a glimpse into what they could have been. There is no great lesson or metaphor for something deep and moving. I believe I was simply meant to enjoy their company. The two boys were very friendly and too cute for words, the daughter was loving and talkative...I was entranced by them. Soaking up every second, burning it into my mind. I was looking into what could have been...what could have been me...what could have been my sons. It breaks my heart but at the same time, I loved every second. I didn't want to leave.
Oh God...thank you for letting me look into a little piece of what could have been. It was beautifully bittersweet.
History class. Back of the row, next to the door. I remember thinking "it got really quiet"...then someone walked in and told us to turn on the TV.
My teacher did..and we just watched in complete silence and horror, as we saw the second plane hit the towers.
That's all I remember.
I don't know if they sent us home early, but I will never forget the disbelief I felt. The feeling I had, like I was watching a movie, there was no way this was real. No way that people are dying, right in front of my eyes...it can't be real.
An amazing woman, whose work you have seen before on this blog, created this to send love across the ocean from Australia.
2. My husband's car broke down.
3. The engine needs replaced in said car.
4. Said engine is going to cost, with installation, about $3000.
5. My husband got fired. For no reason.
6. Said husband got his old job back within hours of said firing.
7. I had a meltdown at work.
8. Unable to gather $3000 so far.
9. When it rains, it pours.
Did I forget anything??
10. I need a vacation.
I'm not giving up.
You may be thinking "No! You can tell me anything."
But that's not true and you know it.
There are some things that can not be said out loud. Some emotions that can not be shared. Some experiences, some emotions, some realizations, that cannot be share. Plain and simple. Period. No doubt about it.
I could tell you that I no longer find other's pregnancy announcements enjoyable and you will either relate, or frown and think "well, that's not cool.". It's just reality. No judgement here, just a plain and simple realization that others will ALWAYS think differently then me. That's ok. Sometimes it's not, but that's not my point. There are some things you can only share with your therapist or best friend. Like I did.
I love my therapist. I would see her again if I had the same insurance. But I don't. She is amazing. I recommend her to everyone. Our first appointment; she listened for an hour and half while I bawled, yelled, and laughed about the past year and a half. She never once looked at the clock or acted bored. She listened and nodded and laughed and wiped away tears as I told her my story. She is uh.mazing.
She changed my life.
Anyway. Back to what I was saying: you cannot always say what your are thinking. I'm here to tell you that is ok. Just because you have a blog and people follow it, does not mean you are an open book. That's ok if you are!! But some of the time, I'm not.
I am SO in tune with my body right. Desperate for another child. Praying, please God, please...I just want another baby. I keep track, diligently, of my cycle, of when I'm ovulating, of any spotting, of any soreness..any signal that something is different.
Sometimes I hate my body.
It's that quick. Now you have to tell them. My baby died.
"Um. Yes. Well, you see..."
My baby died.
"How old is he?"
"He was three months old. I had a perfectly normal pregnancy..we had no idea anything was wrong..."
My baby died.
That's how it usually starts. Or "how old are your kids?" I had to answer that question just the week before. It depends on my mood, normally I don't mind sharing Corbin's story, but I hate the uncomfortable feeling that appears whenever they realize my baby isn't alive. The look in their eyes. The shape in which their mouth forms as they realize that my answer is way deeper then they thought.
I have to take a deep breath, formulate my answer, and hope they don't react in a way that makes me feel worse.
I always start slow..work into what happened. I don't just dump out "my baby died". Personally, it hurts me to skip past his amazing life, the way he fought to live, and how his legacy lives on through Corbin's Bill. I take the time to explain his heart problem, his fight, and how we helped pass a law in his name. I tell his story because I want them to know.
See, I know how I feel. I've been living this reality for that past two years, but your are just now learning about Corbin, about his heart problems, and how he died. You have just milliseconds to react. You can't hide your initial reaction. I see it all over your face. I know you're uncomfortable, or you feel pity. Please don't just say "Oh, ok." and change the subject. That makes me feel ill and incredibly uncomfortable. Please ask me his name and about his story. Please tell me you are sorry for our loss. Don't turn away or change the subject. I know my son died. I will never, not for a single instant, forget that. It's ok. I can talk about it. Just don't ignore that my son lived. That hurts the most of all.
Loss parents: how do you tell other's about your angel?
From today through May 3, every time you share a relay post online, Johnson & Johnson and the Bill & Melinda Gates Foundation will match your action with a $5 donation to the Shot@Life campaign.
Newborn health.You've heard me talk about it before and I'm sure you know how big of an advocate I am for healthy babies. I knew nothing about newborn screening, pulse ox, or the importance of education until after Corbin was born. I can't imagine living in a place where it is customary to hold off naming your child for a couple months in case they pass away. But sadly this is the case in countries where many, many babies don't live past a couple months. After Corbin passed away, I delved deep into the world of newborn health and awareness to try and help. You can help too...
- Nearly 3 million newborns die each year globally?
- A newborn is 45 times more likely to die in the first month of life, when compared to age 1 month to 5 years?
- The major causes of newborn death are prematurity, infection, and birth asphyxia- when a baby’s brain and other organs do not get enough oxygen before, during or right after birth are?
- Complications of preterm birth are the second leading cause of death in children before their fifth birthday?
- The majority of these newborn deaths can be prevented?
You can get involved-by following Dr. Gary Darmstadt (Director of the Family Health Division of the Gates Foundation) on Twitter as he tweets about newborn health @gdarmsta
This is a post for Global Team of 200, a highly specialized group of members of Mom Bloggers for Social Good that concentrates on issues involving women and girls, children, world hunger and maternal health.
The posts vary, most are quite boring honestly, but they are very important to me because they hold memories in between the lines of each post. Those words take me back to a time when I was blissfully ignorant and was able to enjoy my pregnancy without a worry.
200 blog posts later, and almost 4 years..here we are. Together, you and I, have helped to change our little part of the world. Together, you and I, have created a legacy that I hope will continue on for a long, long time.
Thank you for being a part of this journey, for sharing your love and thoughts, and most of all for remembering Corbin.
Cheers to 200 posts and making a difference!
The words bounced and echoed through my head today as I heard them shouted through the room. There I was, in a small entryway surrounded by 40-50 people and children, waiting to enter the "Easter Bash". I had my camera in one hand and my sunglasses in the other. My three year old was laying on the floor, pretending to be a frog. My husband was talking about how he wished he hadn't have gotten his boots all muddy before we left. To my right is my pregnant friend and her daughter.
"Corbin! You have to hold your daddy's hand when you go in, or you might get run over."
Please stop talking. Please stop saying that name.
That name. I normally never hear it called out from another parent. I remember the first time I ever heard it called out.
I was swimming with my best friend, her husband, daughter, and Monkey about two years ago. There was a grandmother there with her family and she called for her grandson. It was so emotional for me, I had to go over and talk to them. I started out by saying my son's name was also Corbin and how I never meet other kids with the name. They, of course, asked how old he was. I stumbled over my words as I explained my story. She gave me "the eyes". You know, the eyes of pity. Then she went on to explain that her Corbin was born premature and struggled at first after birth. We chatted a short while before I went my way.
It has been years since I have heard that name and it is just as shocking now as it was then. I couldn't stop watching that little boy; wondering if he was healthy, wondering if he was just small for his age or if he struggled after birth as well.
It seems I was meant to see him, as we saw him again at the grocery store, immediately after the Easter event. I didn't approach the parents, I just watched him.
Corbin. What a nice name.
I just met a little baby at the park named Aiden. He is 7 months old and as I was talking to the mother I found out he was screened with pulse ox at the hospital where Corbin was born.
And get this. The mom said they had just started the screening the week before.
I didn't say anything else. I just watched that precious blue eyed, heart healthy baby swing and I smiled.
International Women's Day (8 March) is a global day celebrating the economic, political and social achievements of women past, present and future. In some places like China, Russia, Vietnam and Bulgaria, International Women's Day is a national holiday. Annually on 8 March, thousands of events are held throughout the world to inspire women and celebrate achievements. A global web of rich and diverse local activity connects women from all around the world ranging from political rallies, business conferences, government activities and networking events through to local women's craft markets, theatric performances, fashion parades and more.
I AM PROUD OF MY CAUSE, MY WORK, MY LIFE, AND MY FAMILY.
How does that word make you feel?
I admit, I used that word myself two years ago. I never gave a second thought as to how it can affect someone, or the impact it has daily on thousands of people a day.
But I sure as heck do now.
Sadly, I've seen some friends online use that word. It really does not sit well with me. Sometimes I don't say anything, but I have gotten better about speaking up without being hateful. I saw it used within "normal" conversation, to show how dumb the writer felt.
My response: "Dumb, stupid, embarrassed, silly; any of these words you could have used instead of THAT."
I never heard a response.
I don't say that to be mean or condescending. I say it to hopefully open the eyes of the person who used it, to the many, many possible words they could have used instead.
I asked a dear friend of mine Heather to write about how that word makes her feel. She was the first person to share my story on her blog and has been a loving and supportive friend these past two years. Here are her thoughts...
Say What You Mean and Mean What You Say
In 2003, the Black Eyed Peas released their Elephunk album. I bought it and I liked it. I even like the song titled “Let’s Get Retarded.” It was fun, it was catchy and it had a great dance beat. There was a lot of controversy surrounding that song and the band changed the name and the lyrics to “Let’s Get It Started.” People were upset because they felt it was offensive to people with intellectual disabilities. I didn’t get it. I thought they were ridiculous, overly PC and getting offended where no offense was intended. It was just a word after all.
Then my second child Reed was born in 2009 and eventually diagnosed with Williams syndrome (WS). WS is a rare genetic condition characterized by congenital heart defects, heart disease, kidney problems, gastrointestinal problems, musculoskeletal issues, sensory processing disorder, developmental delay, an (amazingly beautiful) overly social personality, an affinity for music and yes, intellectual disability ranging from mild to severe.
Shortly after receiving the diagnosis, a friend commented on something in her environment, “that’s so retarded.”
And suddenly it all made sense.
I had a violently emotional reaction. I knew that she didn’t intend to hurt my feelings and she certainly wasn’t saying my child was retarded but the full meaning of the word hit me like a brick wall.
I continued to see and hear the word used casually and it really bothered me. I wrote a very angry blog post titled This Bears Repeating. It read:
STOP using the r-word or engaging in activities that could be considered disparaging to individuals with intellectual and developmental disabilities and insist that others do the same. In any context at any time - even out of my range of hearing. I don't care if you are joking. I don't care if you didn't mean it "like that." It is not funny. It is not cute. It is not just a figure of speech. It is not just a joke. It is not just about being politically correct. The r-word is rooted in history as a negative reference to wonderful, beautiful people that may not be able to stand up for themselves. The word is hurtful and hateful. Plain and simple.
I still believe those words but I have since realized that my delivery was off. I was speaking out of hurt and frustration and I was preaching to the choir. I wasn’t going to change anyone’s mind by going on the attack and calling them a bully.
I don’t really think that most people that use that word in conversation, or write it in comments, or share pictures on facebook/twitter/whatever believe that they are hurting anyone. But it does hurt.
When you use the word, you are saying something or someone is:
High (as in drugs)
Reed will quite possibly be given medical label “mentally retarded” when he is older and he is anything but stupid, dumb, ridiculous, slow, messed up, idiotic, high or worthless. He is loving, charismatic, affectionate and yes, he is smart. Very smart. He has learned to work around his limitations to find things that his peers can do naturally. He works very hard to find creative ways to achieve things that come so easily to others. So you can see how that word in today’s contextual context really is offensive and hurts others even though that may not be your intention.
I challenge you to really think about what you are saying and say what you mean. If you think a show on TV is stupid, say that. If you think you are dumb because you forgot to buy milk at the store, say that. If you think your spouse is being ridiculous, say that.
But please stop using the r-word.
May 6 is Spread the Word to End the Word day and I encourage you to take the pledge with me to remove the word from your vocabulary. Please visit www.r-word.org today to learn more.
Also, you can learn more about my son Reed’s diagnosis and so many others like him by visiting www.williams-syndrome.org.
So again I ask you: how does that word make you feel?
Pledge to end the word here. You can also follow them on YouTube.
It's called the #VDay10K and it's a brilliant campaign to help those who need it while we run or ride a bike!
It's through a free app, for iphone or android, that allows you to choose from a variety of charities after you have run, walk, or ridden a bike. The miles you have conquered will be translated into dollars for Shot at Life: an organization that gives life saving vaccines, the Nothing but Nets Campaign: which distributes nets woven with insecticide to protect a family of three for three years from malaria ridden mosquitos, and Girl Up: an organization that provides education to girls in third world countries.
The Nothing but Nets campaign really speaks to me. I looked for how to donate, and you can donate any amount at any time and set up a recurring donation! Every 60 seconds, a child dies from malaria, but it is completely preventable and you can help! It costs only $10 to deliver and educate the recipient on how to use it!
Click here to donate.
Charity Miles will donate 25cents for every mile you walk, and 10cents for every mile you bike, so you better get going!Download for iphone: https://itunes.apple.com/us/app/charity-miles/id505253234?mt=8
Download for android: https://play.google.com/store/apps/details?id=com.charitymiles.android
This is a post for Global Team of 200, a highly specialized group of members of Mom Bloggers for Social Good that concentrates on issues involving women and girls, children, world hunger and maternal health.
you pass the funeral home on the way to the grocery store.
When you live in a small town,
you end up in line behind the guy who buried your child, at the gas station.
When you live in a small town,
you notice the freshly dug earth at the baby cemetery.
You wonder who the parents are,
but it's not long before you find each other and become friends.
When you live in a small town,
you pass the playground dedicated to your angel, every day to and from work.
When you live in a small town,
you are surrounded by memories.
Good, bad, happy, sad...
but that does not make it an awful place to live.
It makes it a place where your angel left his mark. Those memories will always be there, reminding you of the good, the bad, the happy and the sad.
And that's okay.
I received this email last week from a mom of twins, both born with CHD's. It is incredibly hard to read an email from someone you have never met, sharing their story of CHD diagnosis and child loss. At the same time though, I am thankful that by finding my story that they feel " a little less alone".
Here is her story..
Overall, my husband and I are doing fairly well. However, my husband has struggled with depression and anxiety ever since. This was foreign for us as well. He had a serious panic attack about 1 month after her death. Our faith has been our foundation. My husband was no where near as strong in his faith before this event but has transformed in more ways than one. But the continued depression and anxiety has made everyday functioning very challenging for him. No one, even our therapists and support groups can understand why he is emotionally affected in comparison to me, but I think it is just another part of Gods plan. He is all knowing and we trust in his grace and mercy in the life. We know He has Riley and she is in zero pain and is whole again. But we really wish we could have her with us here. Part of this journey is the loss of the dream of my twin girls in life and all that would have been a part of that experience. I have been reading a lot of stories of other CHD babies and truthfully, I can't believe how different life could have been with her here. It may not have been the dream I had in my head, she may not have been normal like her sister Reagan.
If you are a parent of a child born with an IAA, please comment below and share your story with this mom; let her know she can always find comfort and support and never feel alone again.
There is no short answer. So I just smile and say ok.
But that's not entirely true.
I feel like I've gotten off track. Like I'm not saying the right things or wasting time when there are more important things out there for me to do. I'm not sure...I feel sort of lost. Disconnected is a better word. Disconnected from Corbin. I need to get back to the real me, the emotional, the raw me. I have been rereading through those days. Those days when I would sit and write for hours upon hours, spilling out how I really feel. Not what people want to hear, but the raw truth that they need to hear.
I feel like I'm saying the same thing over, and over, and over...and no one is listening. Sure, it has good intentions behind it and it is important information but it's not full of soul anymore.
I need that soul back. Writing was, IS, so therapeutic for me. Writing has gotten me through the hardest time of my life and has helped me get out those ugly feelings that other people needed to hear to know they are not the only one's thinking it.
That wasn't where I was intending to go with this post, but...
Today is Corbin's second birthday.
"What was his name?"
This question always irks me. It is not "was", it "IS" his name. His name IS Corbin. He IS my son. I first dealt with the question when making funeral arrangements. The funeral director asked me the same thing and I looked at him and firmly said "His name IS Corbin."
We had a balloon release for Corbin at his grave site.
(I hate typing those words.)
We had a balloon release and I forgot AGAIN, for the second year in a row, to put a memory card in my camera. It's a DSLR and doesn't have an internal memory so I didn't get a single shot recorded.
BUT my hubby did also take pictures, so I at least have a few to share with you.
Coming from a very small town, I can see how important having a play space is for local kids and parents. We are lucky enough to have some great playgrounds here, but they are also small and some are outdated.
KaBOOM! started when it's founder, at 24 years old Darrell Hammond read an article about two kids that suffocated while playing in an abandoned car because they didn't have anywhere else to play. He decided to take action and prevent that from happening to any other child.
Since it's founding in 1995, KaBOOM! has raised over $200 million, has served over 6 million kids, and has built over 14,000 playgrounds.
They are holding a giveaway right now (the deadline is tomorrow, the 19th!!) and are asking those interested to post a picture of a playground you love, with the hashtag #ilovemyplayground; you will be entered to win some great prizes!
This is a post for Global Team of 200, a highly specialized group of members of Mom Bloggers for Social Good that concentrates on issues involving women and girls, children, world hunger and maternal health.
Today is Congenital Heart Defect Awareness day!
I am sharing the story of a little boy that could have died at home, if not for a simple, painless, and non invasive test called pulse ox.
Hi, my name is Michele and here is my son Dylan's story: When I was 13 weeks along and having my "nuchal fold" ultrasound they found a spinal anomaly. At the time he was so young and they thought that it could have been just how he was turned in the womb and they were not too concerned. I came back two weeks later and they confirmed that there was indeed something going on with the spine. I was then referred to Children's National Medical Center (CNMC) in Washington, DC to have a more complete ultrasound. After out initial scan at CNMC they told us that Dylan had what was called a hemi-vertebrae. Everything else looked normal and he continued to grow as expected.
We were followed up at Children's for the rest of my pregnancy and because this abnormality was not life threatening and everything else looked fine, I was cleared to deliver at the hospital of my choice with no intervention. Dylan was born on Thursday December 6th in the late morning at Holy Cross Hospital in Silver Spring, Maryland. He was full term and had an unremarkable delivery. There was a neonatologist present at the birth, because of the pre-existing knowledge of the hemi-vertebrae, and he checked out fine. We had two "normal" days in the hospital and were gearing up to go home. Early in the morning the pediatrician who was on call that Saturday came to talk to us, and I assumed to give us the green light to be discharged. How wrong I was. She told us that he had had an abnormal Critical Congenital Heart Defect (CCHD) screening result. This is a pulse oximetry test that measures the oxygen saturation in the blood. His saturation was 100% in his upper extremities and between 82% and 86% in his lower. She was not overly concerned and even told us that is was probably nothing and that his body was just regulating. She wanted to be sure though and asked that we stay to have an Echocardiogram performed. Since it was a Saturday and there was nobody on staff at Holy Cross to do the Echo, we had to wait for a cardiologist who was on call in Northern Virginia to finish and make his way to Maryland.
About 6 hours later, he showed up and within 5 minutes of the Echo being over Dylan was whisked away to the NICU. My mind was spinning. We were packed, I was dressed, Dylan was dressed and we were supposed to going home. Now I was told that Dylan was born with multiple Congenital Heart Defects and would have to have open heart surgery soon or he would die. I was alone hearing this news as my husband had to leave to go get our 2.5 year old son from the babysitter. As I sat in the conference room with the neonatologist, with my husband on speakerphone, listening to him explain what was wrong and what they were doing now, I thought that this could not be my life. Just a few hours earlier, we had everything going right, and now our sweet baby was going to be cut open and have major surgery. Within a few hours of being sent to the NICU at Holy Cross, the transfer team from CNMC arrived to take Dylan to their hospital to figure out our next steps. Dylan had 3 issues going on in his heart. 2 really bad and one kind of bad but in Dylan's case, good. He had an interrupted aortic arch (which meant no oxygenated blood was traveling to his lower extremities) and an aorta pulmonary window (which is an opening in the pulmonary vein and the ascending aorta so there was mixing of oxygenated blood and unoxygenated blood). The good thing was that there is a vessel that is open in utero and closes soon after birth (the Ductus Arterosis) that for some reason did not close that quickly. This is the only way that any blood was reaching the lower part of Dylan's body. When he arrived in the NICU at Holy Cross he was immediatly statred on a drug called Prostaglandin. This drug was keeping the Ductus Arteriosis open and buying him time to get to the operating room. On Thursday December 13th, 7 days after he was born, Dylan had open heart surgery to repair the 3 defects. We left Dylan in the pre-op area with the anastesesia team around 8:15 am and then just had to wait. We were given a pager and were able to wait back in his room in the CICU (cardiac intensive care unit). The sent 4 updates total and at 12:26 pm we got a text that he was off bypass and his surgeon, Dr. Sinha, would be out soon to talk to us.
The moments it took from the time we saw him and the time we were seated in the consultation room hearing "everything went fine" we're the longest and most stressful I had experienced to that time. He said that Dylan did great. He was on bypass for just over an hour and circarrest (no blood to the brain) for only about 15 minutes which is excellent. He said that the next 24 hours were going to be the most critical and if he made it though the night he would feel much better about his recovery. The next 24 hours were indeed hard and they were definitely the most stressful of my life. All of the moments of the past week that I though were bad, were NOTHING compared to this. I consider myself incredibly strong and I never back down from anything but I actually had to go home from the hospital because I was unable to handle the ups and downs that post-op was presenting. Dylan is also incredibly strong and he fought and fought and survived. He was in the hospital relearning how to breathe and eat for another 15 days and on December 30th we were released from the hospital and were headed home!! He is doing really, really well at home and if you didn't know any better, you would think nothing had ever happened to him. At his 6 week post-op visit with his Cardiologist she said that everything looks great and his heart is fully repaired. There is nothing leftover from the surgery to worry about. She said that all I needed to do now was to love him and watch him grow!
He will probably have to have another surgery to repair the hemi-vertabrae in about a year but that is another story, for another blog. We are so grateful for all of the staff at Holy Cross and CNMC. Everyone did their jobs and we were definitely in the right place at the right time.
If I had delivered in DC, where I live, this story could be very different. The CCHD screening is not mandatory in DC hospitals and Dylan would have most likely been discharged.
We were told that if we had been discharged the he would have gotten sicker and sicker and either would have died of heart failure at home, or we would have been able to get him to the hospital but our options would have been limited because of the stress his body had been under. We are especially thankful for the on call pediatrician that Saturday. She is the one who made the call to keep us there and to follow the newly implemented protocol. The CCHD screening told her there was a problem and she acted. We are grateful for everyone who has worked so hard to get the CCHD screening legislation passed in 7 states and the others that are still in process. Thank you, thank you, thank you.
This may be the last day of CHD awareness week, but that does not mean the awareness stops! Keep sharing, keep talking to your friends, keep handing out fliers; keep spreading awareness and we can save lives together!
Share this post- you never know who may see it and because of reading it, ask for a pulse ox on their baby.
It is frightening how fast your life can change with hearing 4 words. I heard the same when I had Corbin; here is another mother's story of her son's CHD diagnosis.
Our lives were shattered with the utter of four little words, “I hear a murmur.” As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock. In total disbelief that this was even happening, I felt numb. I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.
What was supposed to be a happy day, filled with our new baby boy’s two week well child checkup; a photo session with our three year old and his baby brother, and fun time with Grandma, quickly turned into every parent’s worst nightmare. When the tests were complete we returned to the office to await the results. Making the phone call to my husband who was at work was not only emotional but very difficult.
In a matter of minutes your life can change forever.
After many tears and several hours later he came out of the cath lab and was placed in the NICU. For the next three days we were thrust into what seemed like a foreign land with a foreign language. We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail. It was overwhelming emotionally, physically and mentally. Yet we were so unbelievably thankful to have our baby boy still with us.
We were able to take Logan home for two weeks before it was time for his first heart surgery.
When Logan was five weeks old he had his first heart surgery, the BT Shunt. Handing my baby over again to the arms of strangers was incredibly hard. I was a wreck the entire time he was in surgery and praying that he would make it out. Several hours later he did and seeing him for the first time after surgery was quite traumatic. They show you pictures in a book prior to surgery to try and help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like. The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes. It was absolute torture not being able to pick him up and swaddle him in my arms.
Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way. He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube. Being away from our three year old son, Wyatt, for so long was hard on all of us. He came to visit on the weekends but it was so upsetting to him and us every time he had to leave. All we wanted was to be together again and once Logan was stable enough we did.
Logan was still very sick when he came home. He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube. We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.
When Logan was ten months old he had his second heart surgery, the Rastelli. This time around we were more prepared and took the speed bumps along the way post op a little better. His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection. During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit. Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.
Brining him home from this surgery was such a huge celebration for us. It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again. Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair. We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was. When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again. We were devastated because we had originally been told to not expect surgery for a few years, not months later. Thankfully the trip to the cath lab was a success and it bought us some time.
Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract. This surgery was one of the hardest for me personally. It was very different than handing over my baby that I barely knew. This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life. The thought of having that ripped away from me was agonizing. But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.
Since then Logan has grown into a vibrant free spirited six year old little boy who lives each day to the fullest. He is sweet, silly and funny. Looking at him now you would have no idea all of the things he has been through the past six years. He started kindergarten this year and has been busy making friends, something he has wanted for so long.
Every person in our family has been changed by this journey. While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything. It has made us who we are, brought us all closer and taught us so much about what is really important in life.
We are incredibly thankful for each day we have been given because we know how close we came to losing everything. At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects. It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox. Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects. Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen. Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn. It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.
Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation. It made its televised debut on PBS stations across the United States last summer. If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/
To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com
In honor of CHD awareness week, I will be sharing a few stories from Heart parents to help show the world how important CHD awareness is and the need for pulse ox screening. Read how baby Joey is helping to do just that.
first child. We found out in December of 2011, which made telling our families
the perfect Christmas gift. Then on Valentine’s Day we found out that we were
having a boy, and we could not have been any more excited! Everything had been
going great. I had a little bit of morning sickness, but it was nothing that I
couldn't handle. Joe and I were so eager and thrilled to start our own family.
On March 16, 2012 I went to my doctor’s for a routine ultra sound. The ultra
sound tech mentioned something about not being able to locate Joey’s second
kidney. She explained that it was probably just the way he was positioned, but
she wanted to send me for a level 2 ultra sound just to be sure. This was the
first time that I began to worry, but just a little bit. I had a feeling that he
did have both kidneys, so I was more annoyed than anything that she couldn't see
the second one, but a small shred of doubt did linger in my mind. I didn't let
it bother me too much, though, and I continued on with my daily life.
I made an appointment for the level 2 ultra sound, but I didn't schedule it for 3 more
weeks because that was the next opening at my local hospital, and I didn't want
to have to travel all the way down to Boston. I also figured that if he did only
have 1 kidney, then there wasn't anything they could do about it anyways, so
what was the point of rushing. If I had only known what was in store for us.
April 6, 2012. That was the day. It was on this day that my life would change
forever. This was the first day that I truly learned what worry was, and I
haven’t stopped. I think most mothers feel this way after their child is born,
but for my husband and me, this feeling came early and very unexpectedly.
As I lay on the table for my level 2 ultra sound, I watched the monitor closely.
Almost immediately the tech was able to find both kidneys! Joe and I were so
relieved! I remember thinking that I knew he had 2 kidneys all along and I just
couldn't wait to get out of there so we could carry on with our day. But then
she continued the ultra sound for another hour. It was after about 10 minutes
that Joe and I began to wonder why she was continuing to scan me since she found
what we were looking for, but I just kept trying to convince myself that it was
Finally, a doctor entered the room. She did not greet us. She did not introduce
herself. She just uttered the words that I will never be able to erase from my
memory: “I am very worried about your baby’s heart.” I was in shock. I thought
she had the wrong person. There was no way that this was happening. The doctor
must have seen the look of confusion on our faces because she then said, “What
were you guys told you were coming here today for?” “We were told that they
couldn’t find the baby’s second kidney,” I explained. And then more words that
stab me like a knife every time I think about them: “Well, the baby has 2
kidneys, but he has a serious complex abnormality with his heart.”
The rest of the appointment was a nightmare. I began crying hysterically. The
doctor told my husband that he had to get me under control so that she could
then perform another ultra sound. She confirmed that there was a heart defect,
and then she began to rattle off about 10 different kinds of heart defects that
it could be, most of them sounding horrific. She said that my baby might not
survive and that I would have to transfer all my care to Boston. She explained
that when parents find out that there is a serious problem with one of their
baby’s organs, many times they choose to end the pregnancy. She continued to
remind me several times that abortion was legal in Massachusetts. I couldn’t
even wrap my mind around what was happening!
We then had an appointment in Boston, where a pediatric cardiologist was able to
confirm that Joey had a heart defect known as Tetralogy of Fallot (TOF).
Luckily, this was not one of the completely horrific conditions that the
previous doctor was rattling off; however it did mean that Joey was going to
need open-heart surgery soon after he was born. Tetralogy of Fallot is basically
a combination of 4 different heart defects, but the good news is that with
surgery everything was completely fixable. Joey was going to have a tough road
ahead, but then he would be able to live a normal life. He was going to be just
There were so many emotions going through my head at that time. I was so angry
and disappointed that this was happening, especially because it was so random,
and I had worked so hard to eat right and exercise during my pregnancy. I didn’t
even have caffeine! I kept asking myself why. Why did this happen? Why did Joey
deserve this? Why did Joe and I deserve this? It was difficult, though, because
at the same time that I was so upset and angry, I also felt relieved. I was so
thankful that this condition could be fixed, especially because I had begun to
research so many heart defects that were much worse. The rest of my pregnancy
was very nerve-wracking, and it was not a fun experience. Extra check-ups, extra
ultra sounds, extra fear. It was hard to see other people with their babies. It
was annoying that we had to go to Boston every week, as we drove by the local
hospital that was 5 minutes away from my house. It was definitely not what I
imagined, and the innocent excitement that we felt at the beginning of the
pregnancy had soon turned into complete anxiety.
When I was 36 weeks pregnant, one of my almost weekly ultra sounds showed that
Joey didn’t seem to be gaining enough weight. It was then that the doctors
decided that I would be induced at 37 weeks. The date was July 27, 2012.
At 8:01pm Joey made his debut at 5 pounds, 8 ounces and 18 inches long. He was
immediately taken to the corner of the room with several doctors from the NICU.
My husband was able to follow and cut the umbilical cord. The good news was that
he was pink, and he was breathing on his own! This was wonderful because many
times, babies with TOF are born blue and are not breathing. After about 5
minutes, they finally brought him to me. I was able to hold him for another 5
minutes before they brought him to the NICU.
Joey was in the NICU for 1 week. It was the most horrible week of my life, which
is really sad, because it should have been the best. During his stay in the NICU
he actually did really well; however they had to keep monitoring him and
checking his stats because there was a chance he could turn blue at any time and
stop breathing. I was trying to recover from giving birth, but I wanted to spend
every moment in the NICU with him, so that was very hard. I am grateful that I
did not have to have a C-Section because I do not know how I would have been
able to move around. It was already hard enough. I was lucky because Joe was
able to take time off from work, and we had family members there with us every
day. I also received a lot of support from family and friends through text
messages, e-mails, and Facebook. Just knowing that so many people cared for us
and were thinking of us truly helped me get through that time. I don’t think I
can ever describe how much everyone’s support meant.
After a week in the NICU, Joey was continuing to do so well that they finally
let us take him home. It was a very stressful time at home, though, because
there was always a chance that he could stop breathing and turn blue. “Don’t let
him cry,” the doctors advised, because that increased his chances of turning
blue and not breathing. Yeah, that was easy, don’t let a newborn baby cry. Were
they kidding? Nope. Luckily Joey was such a good baby, and he really didn’t cry.
Thank God, because I don’t know how we would have handled it if he did.Joey was home for 3 months before he had his open-heart surgery. He never turned blue! He was hospitalized several times because he got dehydrated and his stats weren't as good as they should have been. That is why Joe and I were so relieved when it was time for his surgery.
October 25, 2012 was the day of Joey’s surgery. We were away from him for about
7 hours, and he was in the operating room for about 5. Again, the tremendous
amount of support we received from family and friends was what got us through
those terrifying hours. They had to break his breast bone to get to his heart,
and then they had to stop his heart for over 2 hours while they worked. It was
such a helpless feeling to just sit there, but in the end it was all worth it
because Joey’s surgery was a success! Seeing Joey after surgery was one of the
best moments of my life. I’m sure he looked awful to anyone else, hooked up to
tubes, machines, and monitors. But to me he looked perfect! His cheeks were rosy
and red, his lips were red, and his skin was one solid healthy color. It was
such a relief to know that he had been fixed.
Joey was at Boston Children’s Hospital for 5 days during his surgery stay. His
surgeon (Dr. Pigula), cardiologist (Dr. Geggel), and surgical team were
unbelievably awesome, and we felt very confident in their abilities to help our
son. During his stay we learned just how highly skilled and trained his surgeon
really was. Thankfully, before Dr. Pigula made the cut into Joey’s heart, he
double checked to see where the coronary artery branches were. Had he not done
this, he would have cut right through one of them, and the outcome would have
been devastating. For some reason, Joey’s coronary artery branches were in a
different place than they normally are, and this never showed up on any ultra
sound or echocardiogram that he had. It is perfectly okay for them to be where
they are; however, they were right where the cut was supposed to be made.
Luckily, Dr. Pigula saw this and was able to make the cut from a different
angle. This made the surgery a little more complicated, and because of this,
Joey’s pulmonary artery, which pumps blood to his lungs, was not able to be
widened as much as they had hoped.
Before Joey left the hospital, he had a sedated echocardiogram, where they were
able to determine that his pressure gradient (which is related to the narrowness
of his pulmonary artery) was at 22%. This was not bad, as anything under 30% is
acceptable; however after surgery, they typically like it to be at about 10-15%,
so they explained that they would have to monitor it. Before his surgery,
though, his was 77%, so his operation was definitely a success.
During Joey’s hospital stay, we were finally able to remove the bandage covering
the incision on his chest, and we were able to see his long scar. I wanted to
take a picture of this, and as I began snapping photos, Joe was playing with
him, and Joey started smiling. I was able to take a really cool picture of Joey
smiling with a giant scar going down his chest and stomach. I didn't think much
of it at that point, but I did think that it was awesome enough to post to my
Facebook page, which I keep private, for family and friends to see it.
A couple days later, my brother asked if he could post the picture to Reddit. I
still didn't think much of it and said sure, as long as he didn't give any personal information.
Within a few days, Joey’s picture went viral and received over a million likes on Facebook. People from all over the world were commenting on how inspired they were by him for looking so brave after such a terrible surgery. Joey received a ton of attention, and we were able to spread awareness
of his heart defect and congenital heart defects in general. We were lucky
enough to appear on CNN, the Today Show, and Inside Edition, as well as various
newspapers (including our local paper, The Lowell Sun) and websites. It was
incredible to see all of the support that Joey received, and it was amazing to
be able to spread awareness of heart defects. Until Joey, I had always assumed
that old people were the ones who had heart problems. It never occurred to me
that people could be born with them for no reason. It felt great to be able to
make this known.
Since then, another 3 months have gone by. Things have died down quite a bit,
and Joey has been able to recover from his surgery nicely. He has been acting
like a regular 6-month-old boy, playing in his exersaucer, listening to music,
watching sports, being read to, attending playgroups. He is such an awesome kid
and is always smiling and laughing. We are so lucky that he is ours!
During these past few months, Joey has had several follow up appointments and
check-ups. At his most recent cardiology appointment, they did another
echocardiogram, where they found out that his pressure gradient had increased to
42%. This was somewhat disappointing news, as it means that Joey will probably
have to have 1 more surgery in the near future to widen the pulmonary artery
once more. However, after this next surgery, he should be completely fixed for
good. As strange as it sounds, I am hoping that this next surgery will be soon
because it is the waiting around that is the hardest. Joey has a sedated
echocardiogram scheduled at Boston Children’s Hospital this coming Tuesday,
February 5, 2013, and this is where we will hopefully be able to figure out if
and when his next surgery will be. In the meantime, we are excepting thoughts
and prayers, and we are continuing to love Joey with every ounce of love that
there is in the world. We are excited for him to grow up and engage in typical
age-appropriate activities, and we are even more proud to someday be able to
explain to him what an amazing person he is and what a large role he played in
spreading awareness for heart defects.
It has been a long road, and it still isn’t over, but Joey is so worth it. Joe
and I are proud to be his parents, and we are happy to share his story.
We have set up a Facebook page for Joey’s supporters called Joey Hearts You,
where people can receive updates about Joey’s life and progress. We are also
selling TOF Awareness bracelets, which can be found on the website we set up for
Joe and I continue to be appreciative of everyone’s thoughts and support as we
get through this journey, and we want to thank everyone very much. I also want
to thank you for reading our story!