Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Wednesday, February 8, 2012

Meet the faces of CHD...


In honor of CHD Awareness week and Heart Month..I have asked some of my heart mom friends to share with you the stories of their warriors.  Please take a moment to read and celebrate their lives and fight.  Please check back often for updates..and feel free to visit their blogs.

MEET KELLEN




We found out when I was 32 weeks pregnant that our baby had Hypoplastic Left Heart Syndrome. HLHS is a rare heart defect in which the left side of the heart is severely underdeveloped and cannot function outside the womb without surgical intervention after birth. From that moment, our lives changed. I was no longer going to be delivering our baby at Reading Hospital as planned. Instead, we would be delivering at Children's Hospital of Philadelphia so that he could be given the immediate medical attention that he would require after birth.
The day we were told our baby had HLHS was one of the worst days of my life. The pain of hearing something serious is wrong with the child you have been carrying is indescribable. After the doctor explained the diagnosis, he drew a picture of a normal heart, and then one with HLHS. He then gave us 3 options: Compassionate Care, a Heart Transplant, or a 3 stage surgery that could allow his heart to function as normally as possible. To us, there was no other option but the surgeries. As we left the appointment, the shock started setting in. Our whole world came crashing down and we were totally devastated. The diagnosis was overwhelming and all we wanted at that point was someone to say "he's going to be OK!". I never heard of HLHS so I spent the next few days scouring the internet reading everything I could and desperately tried to find stories of hope from other heart families who have gone through this. I cried for days and questions ran through my head like: Will he survive birth? Will I get to hold him? Why is this happening to my baby? Did I do something to cause this? My mind was just racing and the doctor's words just kept echoing "ok so there is a serious problem with your baby's heart".
I later found out that there are 40,000 babies born each year with a congenital heart defect. Of those, only 16 have HLHS. Before the mid 80's, babies with HLHS did not survive. The Norwood procedure (stage 1 surgery) was actually pioneered at CHOP and they do 50% of these surgeries in the whole world. They have spent many years researching the causes of HLHS and how to improve the quality of life for these babies. We are very fortunate to live within driving distance of CHOP.
After being diagnosed, we had a ton of appointments at CHOP on a regular basis. We had echos, ultrasounds, MRI's, prenatal exams, and meetings with many different medical teams including the surgeon who would be going into my baby's chest within days of his birth to save his life.
Up until that point, our baby did not have a name. We had been going back and forth between Kyle and Kyler. We decided that he needed a strong name so we began looking at name meanings. Neither meaning was fitting so we went back to a name that we had considered earlier on in the pregnancy; Kellen. We looked it up and it meant "strong-willed" and "mighty warrior". Tommy made the final decision & went with Kellen. It couldn't have been a more perfect name. So, from that day on, he was Kellen.
Kellen was born at 9:25 am on Tuesday December 21st. He cried when he came out and we were so relieved to hear that beautiful sound! Of course they took him right away to assess him but not before we got to see him for a few minutes on his way out. He looked perfect! Aside from the heart defect, he was pretty healthy. He had his stage 1 operation with Dr. Gaynor on the 23rd. He pulled through with no complications. He was already living up to his name...
After I was discharged, we stayed at the Ronald McDonald House with our daughter, Kaylin, and my Mom. They had actually been staying there since the day I was admitted. We celebrated Christmas Day & New Years there. It was actually really nice :) It's amazing how your perspective changes and you realize how much you took for granted before going through something like this. We had our Christmas miracle and being able to be with him was more than we could ask for.
After 2 weeks of staying at the RMH, we decided to come back home and do the back & forth thing. We spent a lot of time down there and tried to spend the night with him at least twice a week. Luckily Kaylin is an awesome kid and incredibly well-behaved so we were able to take her a lot and spend the day. Of course she had her moments :) But she also had quite a fan club down there. I think her spending so much time there helped prepare her for having Kellen at home. It was hard for us though when we did leave Kaylin overnight. If felt like we were choosing between our kids.
Kellen's recovery went very well. He did develop a blood clot in his right atrium & also had a g-tube put in a few weeks after his heart surgery, due to feeding complications from his vocal cords being paralyzed. He was finally able to be discharged on 1/31, the day before his 6 week birthday. We were elated but also slightly terrified to bring him home. The time at home between surgeries was very critical and it was our job to keep him healthy and safe. 10% of these babies do not survive until the 2nd surgery. We knew Kellen would not be one of them, as he has proven to be a very strong little fighter.
His doctors expect his stage 2 operation to be when he is about 5 months old. Every day we have with him is a gift. The shock still hasn't worn off of what he has & will need to go through the rest of his life but we are just incredibly lucky to have him here with us. There are days that are really hard but we have a very strong support system so between that and looking at our 2 beautiful children every day, we find the strength to keep fighting with an optimistic attitude.
We will be forever grateful to CHOP and their phenomenal Cardiac Team. I can never repay them for giving our son a chance at life but I will dedicate the rest of mine to raising awareness for children with CHDs & help fund research to improve the quality of life for these kids! Through this experience we met some incredible people and I became a "Heart Mom". I truly believe things happen for a reason but what that reason is, I just don't know yet...






MEET ZOE


Zoe Madison entered the world on May 11, 2010, with a prenatally diagnosed heart defect, HLHS.  She traveled (in her mommy’s belly) from Arizona to Philadelphia to receive the best care possible.  Fifteen hours after birth, Zoe underwent her first open heart surgery – the Norwood.  Days following her Norwood, Zoe required stent placement in her innominate artery, just above her BT shunt.  Zoe’s hemi-Fontan took place on September 14, 2010.  In July of 2011, we returned to Philadelphia for ballooning of Zoe’s narrowed left pulmonary artery.  Zoe’s half-functioning heart was mended by Dr. Thomas Spray at the Children's Hospital of Philadelphia.  In the next year, Zoe will undergo her final staged reconstruction, the Fontan.  Zoe is doing amazingly well and smiles constantly.  As small and young as she is, Zoe is the new foundation to our family.  She gives us strength and reminds us, every day, how precious life is.   




MEET BAILEIGH



At 20 weeks of pregnancy, Baileigh Noel was diagnosed with a devistating Heart Defect that took everyone by storm, called Hypoplastic Left Heart Syndrome. The doctors had a grim outlook on her life, saying they would be suprised if she made it after birth. Baileigh was strong and pulled through the next 4 months, and was born April 14th at 8:00 P.M. weighing in at a healthy 8 lbs and 9 oz. I held her for only a minute before she vanished with about 15 Emergency Staff rushing her over to the hospital next door that would soon become home to us, called Children's Medical Center. The first time I really laid my eyes on her, she was hooked up to so many i.v.s, monitors that we couldn't pick her up. She immediately had a bluish tint and a mild case of Jaundice. The Heart Team & Surgeons had done an echo on her a couple days after & things weren't looking good. The surgeon, Dr. Forbess was debating doing A Hybrid Norwood, or just completely giving her a new heart. Dr.Forbess decided he would just do the classic first procedure for a Hypoplastic Left Heart Baby, and Baileigh had her very first open heart surgery at just 2 weeks old. Her surgery lasted for what seemed like FOREVER. When she came out, it was heartbreaking her chest was cut open & you could see her heart literally beating, although it hurt me so much I took a look at her heart up close. I felt reassured that she was going to make it by watching its steady beat. But a day later, the doctors said her Heart Function did not look good in results after her Norwood, so we began talking to the Heart Transplant Team. After a huge prayer chain, lots of prayers, and a few good talks with Baileigh, her heart function made a total turn around & it became stronger. She was hospitalized though because she was throwing up 16-25 times a day with HORRIBLE Reflux problems due to how her heart function was so we lived at the Hospital until she would have her next Open Heart Surgery The Glenn procedure which she would have to wait for until she was 3 months old. There was so many ups & downs with Baileigh with her gaining weight, and her heart function. We found out in August when she had her cath, that her Aortic Valve had narrowed so much & needed to be ballooned. She came out of the Cath with an Oxygen tube on but she did outstanding, and 6 weeks later she had her 2nd Open Heart Surgery. This surgery was so different, she came out & the very next day woke up smiling and wiggling around. Her Heart Function had become stronger! But the Aortic Valve had begun narrowing again. Her vomitting had amazingly decreased after the surgery & 2 weeks later we we're packing our bags to leave to home, which is 6 hours away. This was Baileigh's family, she had literally known everyone from that hospital for birth. Nurses we're crying & you could feel the love. I felt crushed though, this would be hard for Baileigh. No more white lab coats to greet her in the morning, she was so use to being greeted by atleast 10 people surrounding her crib to check her little heart. But suprisingly Baileigh came home & has enjoyed every second of it, although we do not wear lab coats & stethscopes, she sure seems so happy to be home! Her Heart function is doing fine we are still watching her Aortic Valve & now she has developed a MILD Leaky valve. She just recently was Hospitalized again to get a G-tube, a feeding tube surgically put into her stomach, I personally chose it, because she had a feeding tube in her nose since birth & It looked so painful, after the procedure she has completely quit vomitting, and she looks so much more comfortable now. If you didn't lift up her shirt to see her battle wounds, you would never have know she's a Heart Warrior. My heart warrior!

MEET PAYTEN KAY (PK to her friends)



On January 29, 2011 at 8:48pm, Payten Kay Murphy was born. As with most first deliveries, the labor was long. I had a very healthy pregnancy and everything progressed uneventfully.  I worked out regularly and ate healthy, as I have been doing all my life.  We planned on having a baby and I mean PLANNED.  Being a lesbian couple we had planned and welcomed our little bundle of joy since day one. We were beyond thrilled and ready to welcome our beautiful new daughter into the world. And for the first four hours after she blessed us, everything was perfect.
Stevie went with Payten to receive her first bath, while I tried to relax.  During Payten’s bath the respiratory therapist noticed that her lips were blue. Payten was given oxygen and her color did not improve.  A few tests later, she was on an ambulance to UC Davis Children's Hospital with an unknown cardiac issue at this point. Stevie, who is a firefighter, left with our new daughter while I remained in the hospital alone and scared beyond belief. Stevie texted me with updates and I called onto our special friends for support so I was not alone during this time.  It was discovered that Payten's right ventricle (the chamber of the heart that pumps un-oxygenated blood to the lungs to receive oxygen) was virtually non-existent. In order to survive, Payten would need a total of three open-heart surgeries, all before she reached her third birthday. The cardiologist was optimistic that Payten would have a good life...had Payten not had her first bath a little late after her arrival she might not be here.
Payten's first surgery (Norwood) was performed on February 4th, 2011 when she was just 6 days old. Coincidentally, it occurred on National Wear Red day - a day set aside to bring National Awareness to Women with Heart Disease. On that day, we received thousands of emails and texts, many from people whom we had never met showing love and support for our little heart warrior. They included photos of family, friends, co-workers and complete strangers wearing red to show their love and support from states across the U.S. Those photos and wishes helped our family tremendously get through one of the scariest and difficult day of our life. In fact, we have made a book with these photos so that Payten can see just how much she is loved. 
Payten spent the first month of her life in the PICU where she recovered from her heart surgery and began to grow and thrive. I pumped so that Payten could have her “mother's milk” so she could grow big and strong for her second surgery that was quickly approaching. We held her every chance we got, sang to her, loved on her and never left her side. 
After a month, Payten was doing so well that she was able to go home. Her nursery had been ready for months (Stevie started decorating when we were only 6 weeks pregnant), and her mom’s could wait to begin their lives together as a family.  Payten’s second surgery (Glenn) fast approached, July 19,2011 was the date.  For a second time we handed our angle off to the surgeons to open her little chest again and help repair her already mended heart.  The second one was a little tougher since we had her home for many months.  Payten did wonderful and has continued to thrive.  She even just celebrated her FIRST birthday.  Being a mom in general is the most amazing thing.  Being a HEART MOM is even more special.  Every parent enjoys all the milestones and greatness of being a mom…but when you have a heart warrior it makes it THAT MUCH MORE SPECIAL.  It takes you back to the basics and helps you remember that life is so precious and to cherish the simple little things in life that many take for granted.




MEET JACOB


  Jacob Dylan Baker was born on March 23, 2010. At our 20 week ultrasound we learned that our little boy has a fatal heart condition called Hypoplastic Left Heart Syndrome. Hypoplastic Left Heart Syndrome is a condition where the left side of the heart fails to form correctly in utero. Without surgery it is 100% fatal. There is no cause for this illness and it occurs in 4 out of 10,000 babies.

When Jacob was born his atrial septum became intact and they had to rush him into the cath lab to place a stint in his heart. He had his first open heart surgery when he was 9 days old. He also had to have a nissen and g-tube surgery. After 2 months in the hospital we were finally able to take our baby boy home. At 4 months old we made our way back to Philadelphia for Jake's second open heart surgery. This time he was home in only 6 DAYS!

We recently learned that both of Jacob's vocal cords are paralyzed and he will need to have his airway reconstructed later this year.

Jacob is the most amazing child I have ever met. He has been through so much yet is such a happy baby. I am amazed at his strength daily and have so much faith that he can live a long life despite this diagnosis.



MEET CORA


Nothing could be done to save sweet Cora. She died in her mothers arms, but was pronounced dead after the doctors heroically tried to revive her for over an hour.  Her mothers pregnancy, labor and delivery were healthy. Cora displayed no signs of a bad heart.  Cora was being fed by her mother one night.  In a moment her mother noticed blood coming from her nose and mouth.  Her parents called 911 and flew to the hospital to try and save their baby.  Cora has touched so many even though she met few. She teaches us all compassion, patience, and to cherish every day.


Through Cora, her mother teachers others about congenital heart diseases or CHDs and focus on sharing Cora's story to raise awareness of CHDs, which is the number one birth defect.

She will continue to work to spread Cora's story forever. Please help by spreading the compassion Cora brought into her mother's life and also raise awareness of CHD.


MEET EMMA





Emma is our 3rd child. On January 19th, 2010 my water broke unexpectedly at 36 weeks pregnant. My husband and I were all excited, we packed up our other 2 children, went and dropped them off at their Grandma's and headed for the hospital to go deliver our new baby girl! I had had a perfect pregnancy, no complications... everything was measuring right on track, there was no reason to expect anything to be wrong. 

We got to the hospital and the nurses hooked me up to all of the monitors to start the laboring process. Right away the nurse started questioning me on baby's heart rate. Was her heart rate always around 200 bpm? No, we said. The nurse notified my doctor and we monitored it closely, after a little while the heart rate dropped down a little bit. Then my labor sort of stopped. The doctor decided to start some pitocin to get it going and get baby out, seeming that she was having some significant rises in the heart rate. 

After about 8 hours of labor, Emma was born!! My husband and I were so excited! As the nurses took her over to the warmer we started talking and finalizing her name and texting our family and friends with the good news. It was then we noticed chaos across the room. MY doctor was over by the warmer working on our baby, yelling at the nurses to hand her stuff. I got a glimpse of my baby girl and she was blue and did not look good. The room was filled with panic. It didn't take long for them to have her hooked up to oxygen, monitors, all sorts of machines and off to the nursery they flew with her. 

Something was wrong but we didn't expect the worst. We thought since she was a month early she was having a little trouble adjusting and learning how to breathe. Just a couple extra days in the nursery maybe. 

Test after Test after Test. Specialists called in. Why couldn't they get Emma off the oxygen? 

It was the next day when Emma's doctor came in our room (when we had a room full of family and friends). He says "I'm sorry to tell you this but your daughter has some problems with her heart. We have a team from Children's Hospital in Minneapolis on their way to transport her down to Minneapolis. I have put her in touch with a great cardiologist down there and he believes her condition will require heart surgery within the next week". 

There are no words to explain how those words feel to a new mom and dad. Anxiety to the extreme kicks in! 

Long story short, our daughter has a heart condition called Shone's Syndrome. The left side of her heart is significantly smaller than the right side. 
She had to have heart surgery at 6 days old to repair her aorta. She spent her first 2 months of life down at Children's Hospital. 

Emma just turned 2 years old this last month and is a little ball of energy! She is seeing her cardiologist on a yearly basis at this time. Her heart seems to be holding stable. She may require more surgeries down the road- maintenance work as they call it. That could be when she's 3, or it could be when she's 20. We just don't know. It's a play by ear world. She has a few noticeable things that signify her heart condition, her chest - her heart surgery messed with her rib cages so half of her rib cage sticks out and the other half is caved in, her surgery scars, and she tends to turn slightly  bluish purple very easily during the winter or after a bath. But these are just minor things that come along with having a serious heart condition. 

I wouldn't have ever dreamed it on January 19th, 2010, but being a heart mom is a very special blessing. You gain a whole new perspective on life. I've met countless other heart families since Emma was born and each of those families are such an inspiration to us! We are not alone in this fight! Not by any means! CHD affects 1 in 100 babies born each year! 1 in 100 children are starting their life out with significant heart problems most people hope to never see in their senior years! Having Emma has changed our lives! We are very involved in the heart walks each year, fundraisers, and even attend the support group meetings! 


Every day that we are blessed with Little Miss Emma is a true 

miracle! 




MEET JULIANA




My journey with Juliana started on April 22 when I found out that I was pregnant, I was so happy and excited I had no words. During this time the relationship with Juliana's father and I was already in trouble. My pregnancy was the best time of my life I had never felt so good and happy before, I didn’t have any horrible pregnancy symptoms. At my second ultra sound was when something shifted, the fetal medicine doctor couldn’t see the left side of the heart so she scheduled an appointment right away at the hospital with a Pediatric Cardiologist. At that point I was still calm and that day my brother was the one that had gone with me to that ultra-sound to hear the beautiful sound of Juliana's heart.



After going to see the card at the hospital I spend the next 8 hours with her doing ultra-sound after ultra-sound so that she could get as many different images as possible ,but Juliana was not helping by always having her arms at her side or her butt in the air. All personality from the very beginning. when it was finally time for the doctor to give me a diagnoses I called my father so that he could be there with me. It was August 12,2010 the day that changed my life forever at 20 weeks pregnant Juliana got a diagnoses of Hypoplastic Left Heart Syndrome!!! Of course she had to paint that horrible picture of everything and anything that could go wrong. I cried for 5 minutes and never cried again until the day of her Norwood of course. My doctor also wanted me to have an amnio and that was the last thing I wanted to do because I know that it may case miscarriage. The doctor wanted to rule out down syndrome and Q22 and what ever else they see! On Friday Aug 13,I received a call that I had my amnio scheduled for that afternoon, I cried again, but here I cried because I didn’t want anything to hurt her, my father went with me and I have to say that ,that was one of the worst things I ever had to go through. My father was watching the monitor when the needle went in my stomach and became very emotional because Juliana became aware of the needle in her "SPACE" and was trying to reach for it. I was in bed for the next 3 days. I was not scared about the results even though they to awhile to come back I new in my heart that Juliana's only diagnoses would be HLHS, and it was!!!!

The cardiologist I have close to home wanted be to deliver Juliana at Columbia in NY and I was all for it because when I was a little girl Columbia saved my life, thats a whole other story. I met with a Dr at Columbia and she was nice but I didnt feel at ease or comfortable for that matter she told me I still could get an abortion and that life was going to be difficult because HLHS babies always have severe delays and very blue,and bla,bla,bla,bla.At Columbia they wanted to take Juliana out early so they are a little more aggressive there on how they handle their heart patients. I asked this doctor in her practice how many HLHS patients are normal and she said 1!!!!! 

I still had some time not to much when I finally decided to go to CHOP and meet their team and from the moment I was greeted I knew thats where I wanted Juliana to have her surgeries. Thank God that CHOP took her insurance. There was a twist I was high risk in my own right so CHOP did not let me delivery in their special delivery unit, and Penn Medicine did not take my insurance!! Lets say it was stressful until the very last minute. Penn Medicine let me deliver  there so that I could be close to Juliana.

Juliana is an amazing little girl. She is my everything and I wouldn’t change a single thing. She is full of energy, loves to dance, loves to eat.

I am so BLESSED she chose me to be her mom...








1 comment:

  1. Thanks so much Jackie, for sharing the stories of our heart warriors! Reading them definitely made me cry! (probably shouldn't have read them at work, lol). I haven't seen Kellen's story since I first wrote it back in January...wow, that brought back some emotions. We love you guys so much & are very lucky to have you in our lives & be on this crazy heart journey together <3 xoxoxo

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