‘If you want to go, we will let you. If you want to fight, we’ll fight forever.’ She didn’t want us to suffer.’: Mom loses baby to Pulmonary Atresia, Intact Ventricular Septum, ‘She made heaven so much bigger’

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Disclaimer: This story includes details and pictures of child loss and may be triggering to some.

“November 5th, 2018 is a day which is forever etched in my memory. Not a lot of people can pinpoint the day their lives changed forever. For our family, it was that day. What was supposed to be a routine high-risk doctor’s appointment turned into something much, much different. My husband and my mom came with me to the appointment because they are my support team.

This was our second miracle baby; our first miracle baby is now a beautiful, smart, and sassy 4-year-old little girl named Rozzilyn. She was so excited to be promoted to a big sister, and we were so thrilled to be adding to our little family. You see, I wasn’t supposed to be able to have any children. At a younger age, I had a routine surgery go wrong and was told my chances were very slim I would be able to naturally conceive a child (one in 256,000 to be exact). God knew all I ever wanted was to be a mommy. He knows all the desires of our hearts and he is faithful. He blessed me and my husband, Will with two beautiful daughters.

The appointment took a long time, but I never once was worried something could be wrong with our sweet Ellie girl. About 2 hours into the appointment, the high-risk doctor came in and said the words no mother ever wants to hear. ‘Something is wrong with your baby’s heart.’

Courtesy of Tiffany D.

‘No, no this can’t be happening, she is perfect, she is growing. How could there be something wrong?’ I thought to myself. He then proceeded to tell me

we would have to deliver in Gainesville, Florida, due to the fact they are one of the best hospitals for babies with congenital heart defects. In those 5 minutes, I became a different person. The old, naïve Tiffany was gone, and a new broken Tiffany was born.

That day, Ellie was diagnosed with Hypoplastic Right Heart Syndrome, a very rare Congenital Heart Defect. She would need three surgeries within the first 5 years of her life. The next few weeks were a blur of countless appointments with pediatric heart doctors followed by lots of unanswered questions and concerns. Through it all, we kept our eyes on Jesus. We knew He had created Ellie into His perfect image and her life was precious and perfect. No matter what. Our tribe of people took care of us, fed us, prayed for us, and raised money for our family to help offset the hospital bills and doctor’s appointments. They held us up when we could barely stand. We will forever be thankful for them. We created a Facebook group called ‘Bless Her Heart.’ This went from being a small group of people to over 800 people throughout our journey. Our girl was making her legacy long before she was even born.

We got a call from Shand’s hospital in Gainesville about our first appointment. We live 5 hours away, so we would drive down on November 25th and have our first appointment the next day. At this appointment, we met one of the greatest doctors I’ve ever had the privilege of knowing, Dr. Jennifer Co-Vu. She was Ellie’s pediatric cardiologist who would be taking over her care while we were in Gainesville. At that appointment, they confirmed Ellie had HRHS and would need surgery after she was born. We left the appointment feeling confident in the diagnosis and preparing ourselves for the next appointment.

Courtesy of Tiffany D.

The holidays came and went, and then it was time for our next appointment, 2 days before my baby shower for Ellie. It turns out she had been misdiagnosed. Ellington did not have HRHS which we originally thought. She had Pulmonary Atresia, Intact Ventricular Septum with coronary sinusoids. This was much rarer than HRHS-tricuspid atresia and worse than we thought. The doctor said, ‘She will need a heart transplant before being able to leave the hospital.’ When we received the news, I broke down. Will had to physically hold me up to keep me from falling to the ground. I had already wrapped my head around my baby having three surgeries before the age of 5. I had done countless hours of research trying to understand what our ‘new normal’ would be. This new diagnosis was like being punched in the gut over and over again. ‘This can’t be happening!’

As we left Gainesville and traveled back home, Will and I talked, prayed, and listened to worship songs. I remember vividly Will looking over at me in the passenger’s seat, his eyes filled with tears and saying, ‘No matter what, we will never turn our backs on God, no matter what the outcome.’ Then and there, we knew our baby girl had a bigger purpose in her life. She would bring others to know the Lord through her story.

Courtesy of Tiffany D.

We informed all of our family and friends of the new diagnosis. Once again, they went above and beyond to love and pray for our family. The next few weeks were hectic. I was to report to Gainesville 2 weeks before Ellie’s due date. We would have to relocate our family until Ellie got her new heart. It could be weeks, months, or even a year. Those last weeks at home were spent getting her nursery ready, packing up our family, and trying to enjoy our last little bit of normal for a little while. While we were in Gainesville, we would need a place to live. We were blessed beyond measure to be able to call The Ronald McDonald House of North Central Florida our home. They were an absolute saving grace to us.

We moved into the RMH on February 13th. They did a fetal echo on Ellie’s heart and when the doctor checked, my blood pressure was extremely high. I had developed pre-eclampsia again. I was admitted to the hospital for my safety and so they could monitor Ellie as needed. Will and my mom would switch off staying with me at the hospital and taking care of our other sweet girl, who was down the road at our new home away from home. Things were not improving and they could not keep my blood pressure down, which was not safe for myself or Ellie. The doctors made the call I would deliver Ellie via c-section. We couldn’t wait to meet our sweet girl.

Monday came and Rozzi came into the hospital room wearing her ‘big sister’ shirt, beaming with pride. She was so ready to meet her new best friend.

On February 18th, 2019 at 1:08 p.m., Ellington Paige DeBoard was born. She weighed 9 pounds, 1.5 ounces, and was 20.8 inches long. She was absolutely beautiful, just like her big sister. We got to see her for a few minutes before taking her to the NICU and doing another fetal echo on her little heart. While I went into recovery, Will went to be with our baby girl. They confirmed her diagnosis and told us about her treatment plan. She was transferred from the NICU to the pediatric intensive care unit.

Courtesy of Tiffany D.
Courtesy of Tiffany D.

The next few days were filled with lots of tests, MRIs, and countless doctors and nurses coming in and out. They were absolutely amazing, provided the best care possible to Ellie, and explained everything that was happening so we could understand it. They kept us in the loop about everything they were doing to help our little fighter.

Courtesy of Tiffany D.

On February 24th, 2019, things took a turn for the worse. Our little girl was getting sicker by the hour. They could not keep her numbers where they needed to be. She was not responding to the medicine and her little body was fighting so hard. The doctors told us the next 24 hours were critical and her heart could stop at any moment. They told us to prepare ourselves for the possibility our baby wouldn’t make it through the night. Well, we did what we always do, turned our eyes to heaven. We begged and pleaded for the life of our daughter. How was I ever going to live without her?

We prayed, ‘God, your will, not ours, be done.’ The next 24 hours came and went, and things did not get better. They got a lot worse. We knew our baby was tired, we knew she had fought as hard as she possibly could, and we knew the only one who could heal her broken heart was Jesus.

Courtesy of Tiffany D.
Courtesy of Tiffany D.
Courtesy of Tiffany D.

I remember that morning so vividly. Will and I slept in the RMH family room the night before because she was getting sicker and sicker by the hour. ‘Let us know what you want, baby, and we will do it. If you want to go be with Jesus, we will let you. If you want to fight, we will fight forever for you.’ That morning around 7:00 a.m., we woke up and headed to her room. We were greeted in the hallway by one of her doctors, who pretty much told us she wasn’t going to make it through the day. We had promised to do whatever she wanted. She wanted Jesus. She didn’t want us to suffer. She didn’t want her big sister to grow up in a hospital watching her suffer.

Courtesy of Tiffany D.
Courtesy of Tiffany D.

Her 8 days in the world had been hell on earth, and she was ready for eternity. As we got to her room, we knew it would be soon.

Courtesy of Tiffany D.

We began playing her song ‘It Is Well.’ The nurses took out all of her cords and wires so we could see her beautiful face. We took pictures and did her handprints and footprints. We read to her, sang to her, and finally, for the first and last time, we held her. At 9:57 a.m., she went from our arms into the arms of Jesus.

And in an instant, she was healed. She was whole.

Courtesy of Tiffany D.
Courtesy of Tiffany D.

It has been a little over a year since Ellie died. It has been the hardest and worst year of our family’s lives. We miss her every single day the world turns. She is part of our everyday lives. We talk about her all the time. We do things to honor her and to remember her name. We have done countless fundraisers for the Ronald McDonald House. On the 18th of every month, we started something called ‘RAE Day,’ or Random Act for Ellie Day. On this day every month, we encourage our friends and family to do something kind for someone else in honor of her: buy a stranger a coffee, volunteer somewhere, donate money or time to a good cause, be a good human and love others, for our sweet baby.

Ellington Paige DeBoard spent 8 days on this Earth and changed more lives than I can count. So many people have come to know Jesus through our family’s testimony of loss and love and never turning our backs on God. One of the greatest things anyone has ever said about our baby is, ‘She made heaven so much bigger.’ It is the greatest legacy anyone could ever hope for. She led people around the world to know Jesus and to trust in the Lord with everything. She changed the world. She changed me. I will forever be thankful God chose me to be her mommy. I can’t wait until she meets me at the pearly gates of Heaven, but until then, I will be loving deeper, forgiving faster, and making sure everyone knows the story of a sweet little angel named Ellie Paige DeBoard.

Courtesy of Tiffany D.

 

My mom gave the eulogy at Ellies Celebration of life, she wrote the most beautiful words for her and I believe everyone should have the opportunity to hear it.

I asked my Gramma once, ‘Why do day-lilies only last for one day?’ She just smiled at me and said, ‘Well sweetie, when you are that beautiful, I guess one day is enough.’

Ellie Paige WAS that beautiful. In her short little life, she touched more hearts than the average person will touch in a lifetime. It would be hard to measure her impact on this world, but what I am certain of is her impact on the NEXT world is what matters and measuring it would be impossible.

People from all walks of life came to know about a little baby girl with a heart problem. Thousands of people prayed for a little girl named Ellie Paige.

THOUSANDS of people became invested daily in praying for a little girl who had a heart problem. The vast majority started their day by checking Ellie’s page and ended their day by checking her page. She became part of their hearts as they faithfully prayed for her and her family — my family –OUR family. Our family was changed forever on November 5th, 2018 when we discovered Ellie’s heart problem. Thousands of people prayed somehow God would heal Ellie.

Courtesy of Tiffany D.

‘We need a miracle, Lord. PLEASE send a miracle.’ You know what, HE ABSOLUTELY DID!

Thousands of people begged and pleaded with God to work a miracle in one little girl’s life. But in true form, He saw the whole reason Ellie was sent to us, to begin with.

We ask God to fix ONE heart — He used ONE heart to fix MANY hearts. Hearts which had become hardened became softened. Hearts which had lost faith began to slowly find it. Hearts which had given up hope, began to hope daily for a miracle. They just didn’t know the miracle was for THEM, not a little 9 pound, 1 1/2 ounce beautiful baby girl.

You see, Ellie only lived 8 days on this place called earth. She was not here long enough to develop a REAL heart problem. Her heart was pure. All she ever experienced from the people who loved her was LOVE. No, God did not fix Ellie’s heart problem because she didn’t have one. Instead, he sent her to fix our HEART PROBLEMS.

There is no divisiveness amongst these people, there is no hate, there is no rudeness or sarcasm, there is no pettiness or jealousy, there is only LOVE. Love for a beautiful baby girl with brown eyes and chubby cheeks, and a cleft in her chin she got from her Yaya and a precious little spirit. A spirit of LOVE.

Through one little girl who needed a new heart, God was able to fix a lot of people’s ‘heart problems.’ We will never know this side of heaven just how many miracles actually came about because of Ellington Paige DeBoard and her heart problem. All I know for sure is, she doesn’t have one now. She is with Jesus. She is whole and happy. She is surrounded by loved ones and one day, I will see her again.

She was precious beyond words and lit up our world for 8 brief days. She didn’t need a miracle. SHE WAS THE MIRACLE.”

Courtesy of Tiffany D.

This story was submitted to Love What Matters by Tiffany DeBoard. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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