Carlyn’s Story

On August 11, 2018 I miscarried my first child.

9 Months later I conceived my sweet Ezra.

On June 5, 2019 a friend asked if I was pregnant because I was eating way more than usual and I could barely stay awake. That evening I went home and took a pregnancy test, even though my pee looked like water because I was drinking a lot of water. It was very faint and I could not tell 100% if it was positive, but it looked positive and the friends I sent it to said it was positive.

The next morning I took 2 more test and sure enough I was pregnant with my rainbow baby. I was excited but so nervous due to miscarrying with my previous pregnancy.

Around 6 weeks , I went to the bathroom wiped and there was blood, but it was only that one time that day and no more and my doctor told me it was fine.

On June 28th, I had my first appointment to see my baby, my mom went with me. After much anticipation…YAY there was a heartbeat , beating nice and strong at 163 bpm.

On July 6th, I had the same bleeding happen, just once and then no more and again I was told I was fine, this was around 9 weeks.

On July 29th, at 12 weeks and 3 days pregnant, I found out I was having a baby boy! I was ecstatic because I always wanted a boy first, but I was happy as long as I had a healthy baby.

On September 17th, I had my first anatomy scan with MFM, at this appointment I found out that I had an anterior placenta and placenta previa. I also found out that baby Ezra’s right ventricle was looking small and the doctor suspected Ezra to have Hypoplastic Right Heart Syndrome. He set me up for an appointment 2 days later for a fetal echo.

On September 19th, I found out that Ezra had Tricuspid Atresia, HRHS, a severely hypoplastic pulmonary valve. They couldn’t tell if the blood was pumping backwards due to this. He also had moderate pulmonary stenosis. His tricuspid valve leaflets did not open. There was also no inflow into the right ventricular cavity. There was a back and forth flow between the atretic valve and represented VSD inflow/outflow. They could not see his ventricular septum to rule out a defect. They thought he had a moderate ventricular septal defect. They also could not determine if there was an antegrad flow across the pulmonary valve.

I was told that his heart defect would not cause any issues during pregnancy. When all babies are born they have a ductus arteriosus that is supposed to close once they are born, the doctors could not tell if Ezra had this valve. If Ezra had the valve, then they would give him medicine to keep it open and then do his first surgery at 2 weeks old, then another at 6 months, and a third and final surgery between 3-4 years old. I was told this was completely survivable…

On October 18th, I went in for a follow up anatomy scan with MFM… Baby boy was doing great! I got diagnosed with vasa previa which meant I would have to be hospitalized at 32 weeks and have Ezra via c-section between 32-35 weeks because I was not allowed to go into labor. So instead of 16 weeks left in my pregnancy I only had 8-10 weeks left before I was supposed to be holding my baby boy.

On October 22nd, 2019 I went to REX for my glucose test and my final appointment before being transferred to UNC the next week for the remainder of my pregnancy due to Ezra’s CHD. The next week I was supposed to have a repeat echo and ultrasound. I drank the glucose drink then went to see the doctor and the doctor couldn’t find the heartbeat, he had them bring in a small ultrasound machine to check, but kept telling me to wait he could just be hiding.

He sent me to get my blood drawn then to ultrasound. That is when I saw and heard the horrible words, “ I am so sorry, there is no heartbeat..” I instantly burst into tears. The doctor gave me the option to go home and process or to go to MFM next door and get an amniocentesis then go upstairs to be induced, I chose to be induced that day.

On Tuesday October 22nd I was induced into labor to have my sweet baby boy Ezra Nelson Scott Jones. We welcomed Ezra’s sweet face into this world on Friday October 25, 2019 at 12:34 AM.

He was supposed to come early before/on/after Christmas. His original due date was February 7, 2020. He weighed 1 pound 5.8 ounces and 12 inches long.

What was supposed to be the happiest day of my life, ended up being the most devastating and heart breaking day of my life. Ezra was born still, but he was still born.

Although his presence was only known in body and not in soul, he was very much there in spirit and always will be. He touched the lives of our family and was the most precious and handsome little boy that I have ever seen and his spirit will forever be around us and boy is it strong. He is and always will be loved more than he will ever know.

He is with God and is an amazing guardian angel over our family. He knew all about the Nightmare Before Christmas, knew how much his mommy and family loved him, he knew the type of music his mommy likes, and got to listen to her read to him, and hear all the plans that she had for him. He was definitely my mini me/twin and oh so precious. Too handsome and perfect for earth.

Ezra Nelson Scott Jones was born 8-10 weeks early and will forever be my first born and hold the key to my heart. I will never forget him or how much he touched my heart. From the moment I found out about my little man my whole world changed. You became my priority and you were all that I cared about. All I wanted was to be sure you had the best life possible…

You may not be here physically but I know you are with me every day and watching me. I am trying so hard to be strong for you but I miss you so much and would give anything to have you back in my arms. My heart will forever ache for you and my eyes will cry for you and I will always wonder why but I know you are always with me, even though it’s not in the way I want.

It’s going to be so hard to go on without you by my side and watching you grow up. I will never forget you baby boy. I will always do whatever I can to honor you and make you proud of your momma. You made me a mommy and I only wish I could still have you here with me…

Rest In Peaceful Heaven my Sweet baby boy. Ezra Nelson Scott Jones you will never be forgotten and will always be my baby boy! I Love You to Heaven and Back Forever and Ever! #EzrasHeart

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Carlyn has started an organization called Ezra’s Heart.  You can find Ezra’s Heart on Facebook and Instagram.

 

Photos taken by E&E Photography.

Find out more about Project Finding Your Rainbow.

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