Wednesday, February 8, 2012

Connected by Heart ~ Day 1

Connected By Heart is exactly how the Congenital Heart Defect community is connected.

We ban together to spread hope and inspiration.... we all support each other in trials and truimphs, good and bad... most importantly we ban together
to spreadCHD Awareness to help SAVE LIVES!!
We are mothers, fathers, and Adults survivors...
we are strong!!

The next 6 days I will be posting CHD stories.... 3-4 a day.... some will be about CHD babies & children, others about CHD angels, and than some will be of HOPE from CHD Survivors.

Please share! Please tell ONE person about Congenital Heart Defects...
as just telling ONE person can SAVE a Life!!

**Before I share the 3 CHD stories today... I share this Music video...
"Before the Morning" by Josh Wilson...
this song sums up so much about the CHD journey...
AND he wrote it for his real life friend who has an 11yr old CHD survivor...
so by all means this song IS about the CHD journey. Enjoy.

Peyton's Story:

It all started when I found I was preggo I was 18 and a senior in high school life was grand I had weird cravings I was happy when I found out it was a girl. I named her peyton Bryce. Had no idea she was sick. I went in at 12am on Nov 17 2008 to induce my labor I had hard labor for 18 hours then they decided to do an emergency c section then I had my baby girl. Soon to find out she wasn't breathing... I was so scared ... you always wait for that cry and she never took it. She was very cyanotic and they wisked her away to the nicu the next thing I know she's being air lifted to Arkansas children's hospital and had her first open heart surgery Nov 23(Thanksgiving) 6 days later she got a bt shunt. We were finally able to take her home Christmas eve and she was on o2 we stayed home saw the cardiologist every 2 weeks. She was diagnosed with TOF pa VSD 22Q digeorge syndrome. She had a tet spell in march of 2009 and had surgery in April. She got the Melbourne shunt We spent a month & half at ACH. We came home and then she started walking. A year later we went back for her 3 ohs I wouldn't call it a repair BC she has to have it changed every 2 or 3 years. She got the bovine conduit in April 2010. She's been doing great and sees thecardiologist every 3 months. We also found out in the past year she is color blind !! Being a mom to a disabled child is hard and has its obstacles ups and downs tears of joy tears of sad. Its like anoasis or plateau I loving being a mommy to miss Peyton! She is my world & I wouldn't change it! I love my heart moms they help u get thru the day!

Robbie's Story:

Robbie was conceived 1 month after I lost a child at 18.5 weeks gestation due to incompetent cervix. I had a cerclage at 12 weeks. at 14 weeks, I was funneled to the stitch. I was on bed rest 5.5 months. I went into labor at 25 weeks, which was stopped with drugs. I had shots to mature his lungs and was made aware of the complications that are associated with a birth at 25 weeks. The Dr's said they expected him soon and wanted me prepared because babies are rarely healthy that early. I had gestational diabetes and took insulin. we approached each week as a new developmental goal and the objective was to keep him in as long as possible. I had at home monitoring with a contraction monitor and faxed results twice a day. After many scares, I had the cerclage removed at 36 weeks, and was INDUCED at 40 weeks. He wouldn't come out! He was taken by C-Sec 13 hours later.

After his pedi did his first physical, The head of pediatric cardiology came to talk to me. I was devastated as soon as he introduced himself. He looked really worried too. I'll never forget this moment. He said, your son has a very large hole in his heart. 3/4's the size of his heart wall. I thought he was telling me I was going to lose another child. He said we'd wait and see what happened. but, that he would probably need surgery. I was wrecked. So was my husband. We had thought if we'd survived this pregnancy, we'd be in the clear. We told our family, not exactly telling the seriousness of the situation. our whole family was heartbroken.

Shortly after coming home, Robbie went into heart failure. we brought him to the ER, they transferred him to Yale by ambulance. He was given MANY drugs and I was taught how to administer them. we were there a week. His day started at 5 am with his first dose till his last dose at midnight. I slept him in my bed so I could watch him to make sure he kept breathing. He was good about two weeks on the meds. One day I noticed he'd slept all day(which wasn't so unusual since he was so week. He'd only eaten 2oz of formula all day and his breathing was weird and he was pulling at the ribs. I rushed him to the pedi, who looked scared and had me take him to the ER, they pushed us right through to Nicu. They gave him oxygen, and a feeding tube, and told me to call my priest. We had a baptism for him in the hospital, which I knew was really his last rights incase something went wrong, Robbie was transferred to Yale Children’s Hospital. They remembered us when we got there. Robbie had his surgery July 17th, 2005 at seven weeks old. They found an additional hole in his heart and sewed that when they patched the other hole.

I can tell you I have never seen anything as horrible as what Robbie looked like in that bed after the surgery. I was told he would be paralyzed the first night so he wouldn't hurt himself. He did, for just a second open his eyes and smile at me, like to tell me he'd be okay. He was a miracle. truly. It was a horrible journey, but the reward is someone I could never express in mere words his meaning to me. This child saved my life and restored my faith. 4 days later he was home like nothing happened! He was a whole new kid! He was weak for a long time, but he didn't even have pain meds when he came home! He's amazing. He has had great follow ups since and now only has to be checked every three years!

He is a healthy 6 year old now, hehas no idea he was ever sick! I've tried to explain but he doesn't get it yet. He's still a little small but within healthy limits. He'll need no additional surgeries. I tell him all the time that the Dr's fixed his heart, and he fixed mine. He is my best friend.

Logan's Story:

November 3rd, 2006 we celebrated the birth of our second child, a baby boy, named Logan. He was absolutely perfect and had a full head of dark hair. After a normal hospital stay we got to take our sweet baby home. Little did we know at the time that he was hiding a life threatening condition. We spent the next two weeks spoiling our little guy and enjoying watching our oldest son bond with his baby brother. Everything was absolutely perfect, or so we thought.

Our seemingly perfect existence was shattered at Logan’s two week well child check up when our pediatrician uttered those fateful words, “I hear a heart murmur.” He immediately sent us down the hall for a chest x-ray and EKG. The entire time I felt like I was having an out of body experience because it did not seem like it was really happening. “What? A heart murmur? How can there be anything wrong with my baby? Not my baby!”

After the tests we returned to our pediatrician’s office to await the news. They called me back to a room where two doctors were standing looking at Logan’s chest x-rays and pointing at his tiny little heart. My heart raced and my knees felt like they were going to buckle when I saw the look on their faces. It was sadness. They saw what appeared to be a very large hole in his heart but they weren’t 100% for sure. What concerned them the most was that the x-rays showed he was in heart failure. To say that I cried my heart out upon hearing those words is probably an understatement. I was completely devastated and terrified out of my mind.

They sent us home with an appointment to see a cardiologist at the University of Iowa Children’s hospital in three days. Those were the longest three days of my life.

We saw the cardiologist after undergoing many tests including an echo. The final diagnosis served as a big blow. Not only did Logan have a large VSD but he also had four other very complex heart defects, all life threatening. We were shown a picture that illustrated his D-Transposition of the Great Arteries, Double Outlet Right Ventricle, PulmonaryStenosis, Right Aortic Arch and his Large VSD. His current oxygensaturations at the time of his diagnosis were 66%. Normal is 100%. He was dying. They took him from us immediately and performed a procedure in the cath lab to save his life. My husband and I were in a constant state of fear. We cried and we cried until there weren’t any tears left to cry. It was heartbreaking and we were scared for the precious life of our child. The next three days Logan was in the NICU and during that time we learned all about his condition, how to take care of him and were informed what the future would hold for our son. Many surgeries.

We got to take Logan home for two weeks before he began to decline again and it was time for his first heart surgery, the Bt Shunt. One of the hardest things I have ever had to do is hand my baby over to the arms of strangers. To entrust them with his life.

His surgery went well but his recovery was long and full of complications. We spent 31 days in the hospital following his surgery through focal seizures, breathing issues, feeding difficulties including a severe oral aversion and bloody stools. When he was finally discharged he came home with many new accessories, a feeding tube and numerous medications. Life was definitely stressful for a while and sleep was almost unheard of with tube feedings every three hours twenty four hours per day and severe acid reflux. The one and only thing that helped us to survive that madness was the fact that we were beyond grateful to still have him with us. We knew full well that the odds had been against us and that other families had not been so lucky.

Since that time Logan has underwent two more heart surgeries, one his full repair-the Rastelli Procedure with RV-PA reconstruction using a Contegra Conduit at 10 months old and the other at 3 years old to replace his conduit with a homograft and to remove muscular growth in his RVOT. Both surgeries resulted in more post surgical complications from airway issues to Dresslers Syndrome. Both were later resolved.

Today Logan is a happy five year old boy and so full of life. He is currently in preschool and preparing to embark on his new journey in kindergarten next fall. A huge milestone for a little boy who has endured numerous heart surgeries and other procedures. We have watched him overcome so much and struggle through many complications along the way. Logan’s heart story is far from over though and he will need more heart surgeries in

the future since his homograft will not grow with him. He currently is being monitored by his cardiologist for a few little issues and had a loop monitor implanted last year to try and determine some unexplained episodes he was experiencing.

We have learned so much in the past five years. A lot about life and much more about HOPE! Although we cannot foresee the future for our son we have the faith and belief that all things are possible.

You can follow our journey and learn more about Logan’s story by visiting our blog at

**Congenital Heart Defects happen 1 in 100 babies born... that 1 in 100 can be ANYONE... CHDs DO NOT discrimate... PLEASE BE AWARE!! Help SAVE LIVES... as that life may be YOU or YOUR CHILD!!**

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