Changes

You know when you start to get that itch towards the end of winter?  That itch that occurs when you've been cooped up too long in the same hole, looking at the same four walls.  When the broken blinds really start to grate on your nerves.

I've got that itch.  It may be because we've gotten record snowfalls every other week for the past two months here in Southern North Carolina!  (so glad I don't live up north) Or maybe it is because I really am tired of looking at blinds that the dogs/children have broken.  Either way - I'm ready for a change.

I bought new curtains (no I didn't make them, I wimped out - too much on my plate right now) for 6 of the windows in our house.  Love them!  And the blinds are in the trash!

I'm making some changes around me too.  I have some goals - not new years resolutions - but more of things I want to accomplish.  I'm 30 now, and out of shape.  Not overweight, just not able to do the things I used to do.  I want to change that.  I want to feel better about me again.

And I'm making changes here.  I hated my old look - too busy, too much, I'm so much more of a simplier gal.  Instead of paying for a blog makeover, I'm slowly doing it myself.  What do you think of the new header? Seriously can you see it all, because I have a big screen and it fits, but maybe not on a small screen.  What do you think of the new layout? Is it easier to read?

And lastly what changes are you making around you? Do you have the itch?

Heart Winners and What to do about it!

Thank you all for participating in the Seven Hearts Series.  For those who came and read and learned something new - that is what this week was all about.  I know all of the guest posts were heart wrenching to say the least.  But that is why it is so important to get the word out.  Each of those stories comes from a child who was 1 in 100.  That is how often heart defects occur  - and no one knows it.

If you want to help the cause, there are various ways you can participate.

• donate to the Children's Heart Foundation - they give to research projects specific to CHD's.  (only 1% of the money from the American Heart Assoc. goes to CHDs.)
• donate to Spencer's Fund - to help families with the costs of extended hospital stays or long trips to reach their hospital.
• When you buy from Red Envelope - shop through this link - then $10 of your gift purchase will support the Childrens Heart Foundation

Free ways to help

• Send an ecard from PunchBowl and Spread the Love - a donation will be made to the Children's Heart Foundation for each one you send!
• Until pulse oximetry tests are standard. You can tell mothers and fathers to ask their doctor to run a pulse ox on their newborn between 24 to 48 hours of age.  It is the cheap, esy and a noninvasive way to test for CHD.
• Spread the word. Awareness means more support for much needed research funding. Awareness means less mothers and fathers will find out about CHD from the coroner.

Now for the good stuff!  The winners!

First, unknowingly, our heart moms were entered to win one of two heart mom pendants.  Lucky10 Awareness Pendants graciously gave me two pendants to share - and they are beautiful! They have a child with a CHD and make these to raise awareness! I also love their heart strong pendants, so please go check them out!

Our first heart mom winner is.... number one! Chloe's Mom, Kelly! 

Our second heart mom winner is .... number four! Jacob's Mom, Goofy J

Please go thank these Heart Mom's for sharing their stories and tell them congrats on their win!

Now on to the Seven Hearts in Seven Day's Giveaway Winners (I know that is what you have all been waiting for :)

Winner A gets a box of Godiva Chocolate - chosen from 100 entries via random.org  - Winner A is DG!

Winner B gets a $20 gift certificate to Target -Winner B is Abby!

Winner C gets a heart necklace -Winner C is DG again! 

Congrats to all my winners!  I've sent your notifications, you have 48 hours to get back to me.

When your heart is gone

Welcome to the last day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out last Saturday's post.

Today's post comes from Kristine at Cora's Story

Cora’s Story.


I wonder what I was doing last Congenital Heart Disease Awareness Week, last Valentine’s Day.

I wasn’t even pregnant with my heart baby yet.

I’d never heard of congenital heart disease yet, that’s for sure.

A year later, I consider congenital heart disease awareness to be the most important message anyone can spread to expecting parents, moms and dads, and the world.

I found out I was pregnant Easter Sunday 2009. You can imagine the, “guess what the Easter Bunny gave me” text messages and phone calls that came out of that one.

My pregnancy was a surprise so I immediately went and bought prenatal vitamins and “What to Expect When You’re Expecting,” a famous pregnancy book. I kicked into mommy mode, made big life chances and started taking care of myself and my baby.

I had good prenatal care and thankfully a healthy pregnancy. My baby was born only 6 days before her due date, or right on time, November 30, 3009.

My daughter, Cora, looked perfect when she was laid on my stomach. The nurses and doctor quickly gave her a clean bill of health. I sighed in relief. She was here, and she was healthy.

We took her home after two days and spent the next three days wrapped up in becoming a new little family. Cora looked as normal as can be.

Then I looked down and she was dead.

I was breastfeeding one early morning when she died. Out of nowhere.

We rushed to the hospital. Nothing could be done.

I screamed and moaned and was so confused. What could have happened? This made absolutely no sense. She was healthy!

The coroner called a few days later. That’s how I first learned about congenital heart disease.

It’s the number one birth defect. Number one baby killer. Let’s work together to make sure no other Mom learns about CHD from the coroner.

Kristine Brite McCormick writes about Cora (almost) daily on her blog http://www.corasstory.org/  If not on her blog, she can be found on Twitter, @kristinebrite or Cora’s Facebook Fan page, http://www.facebook.com/pages/Coras-Story/224020688142?ref=nf  telling Cora’s Story. Follow Kristine for more information about congenital heart disease or to learn more about the acts of compassion and kindness Cora has inspired.

If you have written a post this week for CHD Awareness, please link up below. 

To all my readers, thank you for visiting with us this week, please take the time to read the posts from these amazing women!  And if you or someone you know is pregnant, have them ask for a level 2 ultrasound, and pulse ox screening after birth, it will save lives!

Happy Heart Day

When the heart stops moving: Seven Hearts Series

Welcome to the seventh day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out last Saturday's post. Be sure to come back tomorrow for the finale!

Today's post comes from Erin at Words from a Busy SAHM

It was one of those pregnancies that you just have a feeling something is just not right. I was pregnant with my third child. Since it was going to be my last child. We decided to go have a 3-D sono done for memories. It was amazing. You could see all the features on her face and watch her yawn, suck her thumb and just watch her facial expressions. From having two kids before her I know that heart rates are not supposed to stay high like they are in the beginning of the pregnancy. When the sono was done she targeted on the heart rate and I noticed that the heart rate was only 129. I’m sure that was normal but it was something that always puzzled me.

A few weeks later I noticed that she was not moving as much and she was not as active. I ended up going into labor 3 ½ weeks early on December 20th 2005. When I arrived at the hospital I was 3 centimeters dilated. I had two c-sections before her so I had to have another one. While I was waiting to see what was going to happen, the nurse noticed that every time I had a contraction her heart rate would slow down. They sent the doctor in with the sonogram machine to do the movement test on her. They did it for a few minutes and she failed. She was not as active as she should have been. They set me up for emergency surgery right away.

I went in for my surgery early in the morning. When they delivered her. she was not breathing and she was not moving. I was so scared at that time. The nurses hurried up and started doing stuff to her. She didn’t even cry at all. After they got her breathing they rushed her down to NICU. I did get to kiss her on her head but that was it. The day after I was able to finally go down and see Olivia. I did hold her for a while.

 I was taken back up to my room and everyone left to go home. Before I went to sleep I called down to NICU to see how she was doing and they said that they are running some tests . I didn’t think anything of it. The next morning I went down to see her. The nurse took me down. As I was there the doctor was on the phone with a radiologist. When he got off the phone he came over and told me “the Plan”. Ok I didn’t know there was a plan in the first place. He told me that Olivia went for a ECHO because they heard a murmur and wanted to check it out. He told me that they found she had a narrow Aorta and that they were transferring her to a specialty hospital. I had some questions and they did help me answer them. After that news I decided to go back to my room to make phone calls. As I was coming up the hallway to my room, my OB doctor was walking toward me. I just started crying that he couldn’t understand what I was saying. He told me that he was going down there right now to find out what is going on. So two days after she was born she is now being transferred to another hospital for testing and to be in the NICU Surgical just incase. My OB doctor trusted me to leave the hospital to be with my daughter just two days after the C-Section. He told me he was going to release me so I can be with her.

The ambulance team that was taking her to the specialty hospital brought her up for me to see her. She looked so tiny in the clear carrier that they had her in. After a few hours of her leaving I was released to go down to be with her. We got into the room and there was at least 4 doctors in there with her and the genetic doctors. They did their own Echo and found that she had Hypo-plastic Aortic Arch. The genetic doctors was also doing their own tests and found out that she had Jacobsen Syndrome. It is not very common.

Olivia did very well in the hospital. She was not discharged until January 12th 2006 almost 4 weeks in the hospital. Today Olivia is 4 years old and she is doing very well. She has not had any surgeries. She is monitored every year be an EKG and an ECHO. She goes to school for special needs and has no restrictions. She does have Parachute Mirtal Valve and Mitral Valve Stenosis. Olivia is a very active girl. I have a website dedicated to her syndrome. http://www.jacobsenssyndromeawareness.com/

Everyday is just another day that she brightens up my life.

It takes your breathe away - Seven Hearts Series

Welcome to the sixth day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out last Saturday's post.

Today's post comes from the Clinkscales Family

I feel very privileged that I have been asked to write about our family’s heart story to help spread awareness of CHD. I have kept a blog for our family since our son was diagnosed with CHD so I thought it would be simple to write our story. As I started writing this post I realized just how hard it is to explain everything we have been through during the last year and a half. We have had MANY ups and downs during this time but as I write this post I can thankfully say our son is doing very well at the moment. My life has changed over the last year and a half but I feel that it has changed for the better. I appreciate every single moment with my son and every single breath he takes.


I will do my very best to tell our story….

I scheduled my 20 week ultrasound on my 30th birthday. I thought finding out the sex of our baby would be the best birthday present ever. However, we ended up finding out very devastating news that day. We found out that our unborn son had several severe congenital heart defects. We learned that he had Hypoplastic Right Heart, Tricuspid Atresia, Transposition of the Great Arteries, ASD, VSD, and a small aortic valve. We also learned that he would need a series of three heart surgeries to survive. I can not explain how sad we were that day. We told our parents but it was weeks before we had the strength to talk to other friends and family. It was more than we thought we could handle.

On January 29th, 2009 our perfect little angel entered this world. Since we had many months to prepare for his birth I knew I probably wouldn’t get to hold him and that he would be rushed away to the NICU. What I wasn’t prepared for was for Cain to not be breathing at birth. There are no words to explain how sad it is to not hear your baby cry and to learn that your baby wasn’t breathing. The NICU team intubated our son and rushed him to the NICU. They briefly held him up just long enough for me to get a look at him before taking him away. It is a moment I will never forget.

When Cain was 6 days old he underwent his 1st open heart surgery which was called the Norwood operation. It is still so amazing to me that they are able to operate on such a tiny heart (basically the size of a strawberry). Thankfully they can and thankfully our son was given a chance of survival. After Cain’s surgery he remained in the hospital for several weeks and on February 17th he was finally discharged from the hospital. We had a wonderful first week at home only to have to return to the hospital for another two weeks due to GI bleeding Cain was experiencing. .

On April 3rd Cain had a heart cath and then on June 5th underwent his 2nd open heart surgery (the Glenn).

We had a few bumps in the road with this hospital stay and had to stay a little longer than we expected but on June 16th Cain was once again discharged from the hospital.

Currently Cain is doing very well. I tell many people that you would never know what all Cain has been through if it weren’t for his many scars on his chest. Honestly, it is still hard for me to even comprehend what all he has been through. For the first several months of Cain’s life he was seen by his cardiologist every week. Now he has appointments with his cardiologist every 6 months. During his last appointment, we were told that Cain will more than likely undergo his 3rd open heart surgery (the Fontan) during spring/summer of 2010 around the time he is 2 years of age. I would like to think that the Fontan surgery will be his last open heart surgery but there is no way of knowing. We have been told that he will probably have another heart cath a year after his Fontan surgery to close a fenestration hole that will be left open during the Fontan. We also know that Cain’s left pulmonary artery is very narrow and will probably need widening as he grows. This would mean he would need additional heart cath’s later in life.

I wish I could say I knew what the future holds for Cain but his long-term prognosis is truly unknown. So far we have seen many miracles in his life and I pray every day that we see many more. Every heartbeat Cain has is a gift and we are so thankful for his gift of life!

To follow Cain’s heart journey please feel free to visit http://www.clinkscalesfamily.blogspot.com/ . I love meeting other heart families. And I also hope that Cain can bring hope to families that may be going through what we went through when Cain was first diagnosed with his heart defects.

Small letters that change your life: Seven Hearts Series

Welcome to the fifth day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out Saturday's post.

Today's post comes from GoofyJ at My Adventures and Antics

CHD, TGA, ASO – a few small letters that have changed my life


My son has a Congenital Heart Defect (CHD). He was born in March 2005, adorable, snuggly, starving, and seemingly perfect. It was a moment when nothing could possibly go wrong he was ten days old, gaining weight and loved a good cuddle. I gave him one last big snuggle and then left him and two of his sisters with grandma while I took the other sister on a mommy daughter date. I had no way of knowing that it was the last time I would hold him for another 2 weeks, and possibly forever. Life was perfect and wonderful, then I came home. The first thing I heard as I walked through the door was my frantic mother-in-law saying something was wrong with Jacob. I rushed into his room and there he was in his crib, eyes closed gasping for breath, moaning, limp, and non-responsive. I remember thinking at least he isn’t blue yet. I have never been so scared in my life. I called my pediatrician and talked with our incredible nurse and was told to bring him in straight away, but if he turned blue to go straight to the ER. I charged for the car and zipped over to the doctor’s office, only 2 minutes away. I grabbed my boy and charged in with the blanket on his head to keep the wind off, he must have turned blue in the two minutes it took to get there because the nurse snatched him out of my arms and went charging across the street to the hospital ER. We pounded on the ER door and before I knew it he was stripped on a table with doctors swarming around him responding to a code blue, wait it was my sons code blue! What was happening? Bewildered and shocked don’t even come close to the feelings that were charging in on me from every side.

My pediatrician came in on his day off and my husband came rushing out from work. The Bishop from my ward (congregation) met us at the hospital. I’d like to say I was the picture of calmness and confidence and that I held it together so well, but I didn’t. I was a basket case, sobbing, scared and praying my heart out.

They stuck a breathing tube down his throat but nothing changed, and that is when they knew that he had a heart defect. We were grilled, any history of congenital heart defects, and they rattled off a few, to which we shock our heads blankly wondering what the jumble of words even meant. Then they were talking about transport to ICU in Emmanuel Children’s Hospital, and I knew we were in for a ride. They called for ambulance transport but when it arrived it was 5:30 p.m. and they were worried that with the traffic he wouldn’t survive the trip, in fact they weren’t sure if he even had another 20 minutes, so life flight was called in and my husband and I watched as the helicopter landed from our car and then we took off.

When we arrived at the hospital we raced up to the ICU and stopped dead in our tracks. There was a huge sign hanging on the ICU doors: STOP! EMERGENCY SURGERY IN PROGRESS! We knew it was our son and so we let them know that we were here and went to wait for a nurse to come explain what was happening. We were informed that his condition was called Transposition of the Great Arteries (TGA). His Aorta and Pulmonary arteries were switched and so the blood from the lungs with oxygen wasn’t making it out to his body it was just being sent back to his lungs. He was basically suffocating because he couldn’t get any air. They were doing a special procedure that would open a small hole in the wall of his heart that would allow the blood to mix and oxygenize to keep him alive until surgery.

They had to do it in his room because he was close to death when he arrived and they didn’t have time to set up the lab. Well it worked and he stabilized a bit and we had to wait until his body recovered from the immense shock it had underwent. Doctors explained to us that his condition was correctable through a surgery call the Arterial Switch Operation (ASO) in which they do open heart surgery and switch his arteries and all the little connecting vessels that go with them. It’s amazing they can even do all that. Jacob had surgery on Easter Sunday. He had priesthood blessings, countless prayers and fasts from all denominations, and the service we received from members of the church was amazing. We witnessed so many miracles. We finally made it home after 2 weeks in the ICU, 1 week on the regular pediatric floor, and more scary moments of collapsed lungs and low oxygen levels.

Now he is a healthy, thriving almost 5-year old. He has more energy than any other kid in my family (we have five now). Even though the experience was scary and there were times I never thought I would make it through there were so many miracles and blessings. No one ever wishes a severe illness on their child, but joy can be found even in the hardest circumstances. To close this post I would like to list seven reasons I am glad to be a mom of a child with CHD.

1. I take more time to ENJOY the children rather than worry about whether or not the dishes are done.

2. I have a closer relationship with God, my husband, and family.

3. I have a new appreciation for life and the wonder of how glorious it is.

4. I don’t take as many things for granted – I realize every moment is a precious moment that can be lost and never retrieved

5. I have met a whole lot of neat people that I wouldn’t have met otherwise. Lets face it – no one WANTS to be in this situation but great friendships are formed because of it.

6. I remember to snuggle a little longer, and to never let the kids leave without a hug (they will love that as teenagers, won’t they?)

7. I realize that when I lack the strength to carry on, the Lord picks me up and carries me the rest of the way.

When a heart needs fixing: Seven Hearts Series

Welcome to the fourth day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out Saturday's post.

Today's post comes from Amanda at Mommy 2 3 Miracles

Imagine this: It was one of those nights. I was pregnant – about 6 months along – and the twins (15 months) were having what seemed as nightmare after nightmare. My husband was working midnights so I got to rush up each time they cried out. This last time, I got up and attempted to rush out of my room however the dog had taken his place at the foot of our bed and was stubborn enough to refuse to move for my pregnant self. “Move….” (Nothing) “MOVE!” (Looks at me) “Come on, MOVE!” (Nothing). So I attempt to step over him…and he moves. This sent me into the door knob and down a long road that we never would have expected.


The following day, I discussed the issue with my doctor and was admitted to the hospital for close monitoring. Hours later, an ultrasound was ordered. We had already had our 15 week scan and it was "normal" so I had no reason to worry - but our life was about to change. The Ultrasound tech (I partially owe my sons life to this woman) performed a routine scan, checking everything and making sure it was all the right size etc. She stopped for a moment and asked her assistant to call in my doctor – from home. (What? Are you kidding me?! Why?!) She said it was because the baby wasn’t moving as much as she would like him too and he wasn’t “passing the test”. Now, I’ve had twins and along with pregnancies with multiples comes NST’s and MANY ultrasounds. They give them a certain amount of time for the baby to move before they call the doctor in! Something was wrong.

Now, imagine during that “routine” ultrasound, your doctor who has been called from home, looks at you and says “It’s textbook, your baby will be born with a congenital heart defect called Transposition of the Great Arteries. I can’t believe it’s so clear. This means that he will require immediate surgery and within days, open heart surgery.” The words a mother dreads hearing: Congenital Heart defect….Open Heart Surgery.

I quickly learned that Transposition of the Great Arteries accounts for 5% of the Congenital Heart Defects and that it meant that the two main arteries coming out of my sons’ heart were backwards. Just like the doctor said, my sons’ heart was textbook. The arteries should come out and cross each other, while my sons came out and ran parallel to each other. Normally, the oxygen from the lungs mixes with the blood in the heart. Not in this case. We learned that when he was born, his blood would run from his lungs to his heart and back to his lungs. The other side of his heart would pump blood from his heart around the body and back to the heart. Without the arteries in the correct place, his body would not get the oxygen he would need to live. We also learned that TGA babies are commonly called “blue babies” when they’re born because of the lack of oxygen to their bodies.

Fast forward to the day of my scheduled c-section and the beginning of the whirlwind that is my current life. I’d made it through the stages of denial and anger but my life had to go on. I had spent my time questioning why this had to happen to me. I already had identical twins with Cancer and a marriage that I was unsure of where it was going. It was time to go, D-Day as I referred to it. We were prepared for the worst but hoped and prayed for the best. We decided to name our son Peyton (no not after Peyton Manning) and we just had a feeling he’d be a little fighter.

He was born c-section and rushed straight to the NICU with only a brief second to stop and give mommy and daddy a strong cry. Minutes later we learned that Peyton’s’ oxygen level was only 20% (yeah this should normally be 100%). By the time I was in recovery, the NICU staff rushed into my room to tell us “we need the father to come sign papers, we need to do an immediate balloon septostomy to make the hole in between the chambers of Peytons heart bigger and allow for the blood to mix.” By the time that my husband had got there, they had already gone ahead and started the procedure – normally done in an OR but there was no time. They did it bedside in the NICU.

We waited six hours before we could see Peyton in the NICU. He had tubes, wires and hoses all over him. The NICU nurses told us that he was the sickest healthiest baby in the NICU. He spent 6 days in the NICU. I spent 6 days at his side and wasn’t about to leave him. On the 6th day, Peyton was scheduled for an Arterial Switch, the surgery that would save my baby. For the procedure, they would open his chest up and switch the tiny arteries which were as small as angel hair pasta, on a heart that was no larger than a small strawberry.

The hardest part of all of this was when they took him to surgery at 7:40 in the morning. They updated us every hour – until they told us that they were finished and that they were going to leave his chest open to allow the swelling to go down. They would let us know when he was in the PICU – which would be soon. I waited for 3 hours to hear from them. After 2 hours had went by, in my head I had began to plan his funeral. I knew that I would be leaving the hospital without my baby.

Finally they came out and told us. They had put a scope down his throat to check and make sure that everything was working correctly and they had decided that his heart was not pushing the blood through like it should be. My baby, who had already gone through so much in his short life, was being placed on ECMO. ECMO is life support. It’s a heart bypass machine but I didn’t realize that until only a few months ago. I knew what it did at the time, but it didn’t click that my baby was on life support. To be honest with you, everything became a haze to me. I switched into survival mode, telling them that anything they had to do to my baby to keep him with us they could do.

We were allowed to see Petyon finally. This was the only time I cried. I had stayed strong through the whole time…but when I walked into that hospital room and saw my baby laying in a bed, sides down because it was apparent he wasn’t going anywhere, I lost control. It wasn’t the tubes, wires and machines and IV’s that he was hooked up to that got to me, nor was it the ECMO machine that worked for his heart or the ventilator that was breathing for him. It wasn’t the fact that he was so close to being gone at all. Peyton didn’t even look like himself. The part that hit me like a brick was that he was so puffy from the fluids that he didn’t even look like his cute self that he was before he went into surgery. I cried. I cried because his face was so scrunched up under his hat and tubes that you couldn’t even see his eyes. I cried to the nurses to place the tape for the vent tubes (which were in his nose and mouth) differently that way he would look more like himself. I just cried! I think it was shock.

After the surgery was a rush of emotions. There was so much going through my mind at the time. ECMO comes along with stories of children that have been on ECHMO too long and children that never make it off of ECMO, ultimately never making it home. It was hard to take in. With all the stress I was under, it would have been smart to say nothing to me, to let me sit and watch my son breath – with the help of the vent – because he was alive. Someone (my mother in law) felt the need to tell me “I know it’s hard but it will be okay.” I remember thinking – outloud – “Really? Do you know that for sure? Have you been through this? Has your son been on life support? Has your son had open heart surgery at 6 days old? NO! HE HASN’T!” I felt bad for saying this stuff but I don’t think I could control myself at this time.

The priest came in and asked if we would like to have Peyton baptized. I lost control again. Looking back, sure we could have done it, but at that time, I had just taken all this in. I told him “no”. At this time, in my head I wasn’t going to have my son baptized under the pretense that he wasn’t going to make it out of the hospital. I was taking my son home.

It was a long few weeks that we spend in the hospital but eventually, Peyton was moved to a different room, taken off ECMO, closed up and even passed a car seat challenge to get out of the hospital. He was a nurse favorite. They even told me to not worry about picking him up because of all the wires but I found out that they carried him around all night long loving on him.

Aside from the ups and downs at the hospital, Peyton was able to leave the hospital about 3 weeks after he was born, after a complete revamp on his heart. I was nervous in the beginning, wasn’t sure how I was going to be able to handle a heart baby and twins with medical issues as well. Life has worked itself out. Peyton goes every six months to check and make sure that everything is going okay. His doctor is keeping an eye on his heart for another issue called Pulmonary Stenosis, which is a result of the scar tissue from the surgery causing his arteries to narrow. He’s two years old now and you’d think he was going on 4 with his brothers. To see him, you’d never know that he was born with a life threatening CHD.

“There is not enough darkness in all the world to put out the light of even one small candle"

TGA- Peytons Story from Amanda Eyler on Vimeo.

The Tale of a Survivor - Seven Hearts Series

Welcome to the third day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out Saturday's post.

Today's post comes from Lauren - a CHD survivor!

Hello! My name is Lauren, I’m 22 years old, and I’m a CHD Survivor (Tricuspid Atresia aka HRHS)


Here is My CHD Journey:

I was born in August of 1987, supposedly a healthy baby girl. I was taken home and thrived. A few weeks after coming home I started to display some things that worried my parents. I was throwing up everything I ate like a water fountain and was developing a rash all over my body. My mom took me to my pediatrician and they told her “I was fine”. My mom knew I wasn’t. Not only her second child, but she was a dietitian and had some medical knowledge; she knew something was wrong. My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine plus they now thought my mom was nuts! One morning when I was 11 weeks old my mom found that I was breathing very heavy and turning bluish-gray when I cried, so she called up my dad and said she was taking me to the ER of the nearest hospital. My mom took me to the ER alone. When she got there, the on call doctor who looked at me first just had learned all about Congenital Heart Defects, so he knew it was my heart. I was taken to get a chest x-ray where I was put on a ventilator. Children’s hospital was called and an ambulance got ready to take me. Once my mom heard was told what was going on; she called my dad who came from work right away. My mom was not allowed to ride in the ambulance due to not enough room. They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital. My parents had been thrown into every parent’s worst nightmare

I made it to the hospital and was stabilized. My cardiologist, the same one I have now, told my parents I have a Congenital Heart Defect called Tricuspid Atresia and that I had to have a heart cauterization to re-rip my PDA (the hole in the heart that every baby is born with, but closes in the first few weeks after birth… this hole was keeping me alive). My cardiologist was kind and caring to my parents. He answered their questions and supported them. The next day I had a heart cauterization to re-rip a hole in my heart. I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age!

My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me it took about an hour for one ounce and she needed to feed me every hour. If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother, Ryan, to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. Of course Ryan adored me so it was hard to keep him away from me. It wasn't easy for them, but they had family to help out and support them. My parents kept strong for me and held onto faith that I would be ok. My parents didn't want to accept that something might happen to me.

In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding. It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. The surgery went well. Though it was successful in its purpose it didn’t make it any easier on my parents and family. I was still a sick little baby, but my parents never lost hope that I would be ok! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well! Soon after returning home I got dangerously sick with RSV! I was taken to Children's Hospital and admitted. I spent about a month recovering from RSV on lots of medication! My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments (I don’t know the proper name for it). After returning home from recovering everything went well and my parents as well as my older brother adjusted. I was born with an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18months old; which was during the time in between my two open heart surgeries.

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure. It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me. The Fontan was a surgery still a fairly new operation (about 15yrs old). This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well. A 50/50 chance is what the doctors bluntly told my parents, but my parents hung onto to positive 50%.

My parents had a lot of faith in the doctors and God that I would come out ok. I came out of surgery just fine. As far as complications that I had from this surgery, other than me pulling out a chest tube (then them having to put it back in while my parents held me down as they didn’t have enough nurses around at the time) and me being on a special diet (medium chain triglyceride diet), I didn't have any. I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989. My family had every reason to celebrate. I did too! I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive. What more could my parents and family want?

After that second surgery I was as healthy you can be having a heart condition. I had years in between the second surgery and any minor concerns. I went to my cardiologist once a year and was on a few medications, other than that I was doing great. I had another eye muscle surgery when I was 8, I got four stitches in the my bottom lip from getting hit be a swing when I was 7, and was diagnosed with minor scoliosis at 14yrs. old. I got a little brother, named Aaron, when I was eleven and that was wonderful, I'd hold him as much as I could and he and I are very close. When I was six my mom got me into acting classes; she signed me up to the family theater in our city. I was in plays till I was twelve when the family theatre group closed. I enjoyed being on stage and it made me feel on top of the world. It is something I will always remember; even my mom was in the plays with me! For my parents and family to see me up on stage happy and alive was so extremely exciting for them. I also played bowling which I loved and years later I ended up being on my high school girl’s varsity bowling team. As I got older I knew I was different, my parents explained the best they can to a young child what was wrong with me. My parents always supported and encouraged me. The always would let me know how special I was and God had big plans for me. My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away. I became very good at this. I lived a pretty normal life for a long time. I was very lucky! For the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn't know). Socially I had some trouble and go teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess), but I did end up making a friend or two. I was happy about that. Even in tough times I tried to have a positive outlook and have a smile on my face.

It wasn’t till the summer I turned 16 where my life changed for me; it was a turning point so to speak. I broke out into hives all over my body for no reason early one morning and I was so scared. I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong. I was in so much pain because the hives were on my joints too and it was hard to move. Finally, after three months of steroids, being off my heart medications, and being watched 24/7 the hives went away and to this day no one has a clue what happened. From then I realized that anything can happen and I was so grateful and blessed for what I have. I held onto my faith in God, but there were times I questioned everything (I still do), but I try to find peace. Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted. I was diagnosed with exercise and stress induced Super Ventricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race). When I first got the symptoms of the SVT’s it was scary for me. I had night sweats, bad chest pain, hard to breath, and harder to do daily activates. I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong. Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain. It can get frustrating, but I deal with it the best way I can.

Then, during my freshman year in college I had a weird episode of the chills, being really hot, chest pain, shaking, light headed, and I was pale looking. This happened at school and I was scared. My mom picked me up and after taking a long nap I was fine. I went in to see my cardiologist a month later and told him. He said if they don’t happen all the time then it is most likely stress, but to keep an eye on it. Well, months later, during my second year of college, it happened again and again. Then, it was just the chest pain part. I went in to see him again and he linked the pieces together… these episodes always happened right before my period or the first day of my period. It varies from month to month, most months aren’t that bad. It always just lasts a day. My cardiologist said that other CHD girls can have bad periods too. It’s just something I have to live with now.

Since then, I’ve also been diagnosed with muscle spasms (a year ago), mostly on the left side of my body that is usually stress or anxiety induced. I had my third eye surgery in July of 2008 and all went well. I’ve had one trip to the ER of Children’s in July of 2009 due to a bad intestinal infection.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily. They remind me that each day I’m ever so blessed and grateful to be alive. These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind. This CHD has impacted my personality in many ways. My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others. It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life. It has given me a motivation to help others and to always have faith. I’m thankful for my life; I’ve been very blessed in so many ways. I have two amazing parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them SO VERY much!! I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!! I also have an amazingly supportive and loving boyfriend, named Christopher, whom I love so much!

I have big plans for my future and though I have a tendency to think negatively, I’ve been trying my hardest to think more positively! I’m in my last year of college getting a Psychology degree. in my spare time I hang out with my boyfriend, I love to write, play video games with my boyfriend, watch movies, be with family, help out in the CHD Community. I hope to someday get married and have kids. I also hope to set up my own CHD organization one day. Until then I will keep spreading CHD Awareness and telling my story!! I have LOTS of Hope that ONE DAY CHDs will be more publicized and researched so that more children will be saved!! My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories… I LOVE my life and I consider my mended heart a gift!!

I have a blog: http://www.laurensheart.blogspot.com/ if you'd like to follow my continuing story.