Support Elliana's Heart Transplant Journey

Our names are Natalie and John Jones and we are Elliana’s mom and dad.

Elliana was born on June 11, 2023 a healthy baby girl! She is such a miracle and a little blessing. I prayed for a long time for this little girl!

The first 17 months of her life was spent at home with me (mom). Elliana never showed any kind of health problems. She was always a tiny girl but her doctor was never concerned about her weight as long as she was consistently gaining each time she seen her which she did until she started getting sick.

After 17 months of being a stay at home mom, I decided to go back to work (which I missed so much). I am a pet groomer and it’s not just a job, not just a career but my passion and I absolutely love what I do! It was such a hard thing to do to decide on putting her in daycare but I found such a good place, I felt comfortable putting her there and thought it would be a good thing for both of us. I enjoyed seeing her updates, playing with other kids and learning new things. But Elliana started to get sick and when I say sick, I mean she got sick constantly! First was a horrible stomach virus that wreaked havoc on all three of us. From then on (November 2024) Elliana would keep getting sick over and over again with minimal breaks in between. Everyone kept saying how normal this was and that I had kept her in a bubble for 18 months and she would eventually catch all these things either now or when she would start school. It was so sad to see my little girl get constantly sick and I did feel so helpless but we would take her to the doctor every time she came down with something. We would keep her home, nurse her back to health and bring her back to daycare so we could work. She would only get a two week window (if that) in between these viruses. Her doctor said it would be great if she could have at least 6 weeks in between illnesses for her immune system to strengthen.

Fast forward to March 6, 2025, she was diagnosed with bronchitis and put on antibiotics and breathing treatments.

March 25, 2025 she was running fever, dada brought her to the dr while I worked. Dr diagnosed her with viral pink eye. Put her on eye meds and kept her home. Elliana kept running a fever for a week straight and as a first time mom with lots of anxiety I tried to stay calm and thought well it’s from a viral infection so not much we can do but let it run its course. Well after 7 days of running fever she woke us up on March 31 with a temp of 104.7! I told John, time to go the the hospital!

We rushed her to Women’s and Children’s in Lafayette La. They done an X-ray and diagnosed her with pneumonia in her left lower lobe. They said they would keep her overnight and was treating her with antibiotics and oxygen. They came see her and was planning on sending us home with antibiotics and breathing treatments. I started to question what made them think she was ready to be safely discharged after a pneumonia diagnosis. I demanded more bloodwork and X-rays. They assured me we wouldn’t be able to see a positive change in the pneumonia after only 24 hours. We started to notice labored breathing while she was nursing and while she was sleeping, this is when they repeated the xray only to see that now her lungs were almost completely white! They transferred us to the Nicu where this doctor wasted no time and got her an echocardiogram. I immediately felt the severity of the situation. ( I knew the xray was bad because I’ve seen those kind of X-rays when my mom was very sick with pneumonia which eventually took her from us.) Needless to say, I was terrified for our little girl! The doctor soon after the echocardiogram tried to explain that she was in heart failure without using the words “heart failure” but I needed him to be completely transparent and say those words that I feared the most. He said it, he said Elliana’s heart is failing, she’s very sick, her heart is very weak and enlarged. He already had made phone calls to New Orleans and Houston. He asked if we were opposed to going to Houston, I didn’t hesitate when I said “whatever it takes to save our little girl!”

It wasn’t but maybe 30 minutes later that The Kangaroo Crew was on their way to get us. On April 2, 2025, Elliana and I got on the jet and flew to Houston where we were brought to Texas Children’s Hospital. Dada drove and met us, arriving about an hour after us getting here.

The level of care we are getting since we been here is just amazing! I know God put us right where we need to be to have the best care for our little Shugga!

On April 3, 2025 Elliana wasn’t doing well and they were trying to put a CPAP mask on her when she coded. She went completely limp, lost consciousness and had a very weak pulse. We fell to our knees in her room with 10 plus people working on her begging God to save our little girls life! And He did! They intubated her and got her stable on a ton of meds. We were told the next morning when the doctors made their rounds that our little shugga’s heart was very sick and she was diagnosed with Dilated Cardiomyopathy and would need a heart pump while she waits for a heart transplant. They are pretty sure her heart has been sick for a very long time and that she was most likely born with a weak heart but due to all the viruses she caught, it attacked her heart and caused this.

You can imagine the confusion, the disbelief, the blaming ourselves and the asking God “why?” I was so careful with her, how could I have not known this?! Then came a little acceptance, and wanting to hear more details of how we could have more time with our little angel. After lots of talks with doctors and lots of questions, we were told repeatedly how sick her heart was and that there was almost no chance of recovery without getting the Berlin Heart Excor VAD, which is a system designed to support the hearts of children with severe heart failure, particularly those waiting for a heart transplant.

On April 10, 2025, our little precious girl had open heart surgery to get the Berlin Heart. The surgery went very well and her heart has even got a little smaller in size! She has good color now, is off sedation meds, off the ventilator, off oxygen and on the road to recover from her surgery. This is all so heavy, seeing our little girl that was so full of life only a few short weeks ago to this..

She has a long journey ahead of her, she has to live in the hospital as long as she has this pump, our prayers is that this pump will heal her heart and she won’t need a transplant but statistics say this pump is almost always a bridge to transplant. Waiting for a heart can take a long time. After being discharged after her transplant we will have to stay in the Houston area for at least a year.

As of now, they are still adjusting medication to help the pump work the best for her. Our days are filled with meetings about her care, future transplant, lots of lab work, X-rays and working with speech and physical therapy. It’s a lot, it’s heavy, it’s stressful and scary!

We are taking things one day at a time, we are living at the hospital with our little Shugga. Home is 4 hours away. As long as she is here, WE will be here! We came here with a few changes of clothes from what we thought would be a short hospital stay in Lafayette, La. We never ever imagined we would be here…

We are very grateful for any and every donation!

We are not working, we don’t leave her side, we need money for everything! John and I need money for food (it’s expensive and we have no where to cook as long as we live in the hospital), our bills back home, gas, car insurance and anything else we may need for our little Elliana. We will be here for a long time. We will need to relocate for at least a year or more. John will find work here as soon as she is stable on her heart pump and able to move up to another floor which won’t be ICU. After her transplant we will look for a place for us to all live together once she is discharged.

If you can help our family in any way, we would be so grateful!

Thank you for taking the time to read our story!

THANK YOU to all of you who have been supporting us, mentally, emotionally, spiritually and financially! We are forever grateful! Thank you for all the prayers! Don’t stop praying! It is Gods Grace that has got us this far!

We love you all and will continue to post updates as we can!

#Ellianastrong #Berlinheart #Texaschildrenshospital #Dilatedcardiomyopathy #hearttransplant #Littleshugga #prayforourfamily