Journie's Journey

Hello to all,

I wanted to create a GoFundMe page to help my good friend Sydnie and her family. Below is a brief view into the life of their daughter Journie over the past year, which has been full of ups and downs and it appears as though she still has a long road ahead of her. Please take a moment to read their story. Thank you to everyone who will share, support and pray for this family.

Hello everyone,

Not in a million years did I ever think I would be sharing my life and journey on a platform like this. My mom has always told me, “Never say never Sydnie”, and she was right in more ways than one.

Our story begins with a healthy, normal pregnancy. Baby was growing, moving, looking good on the ultrasound and I was feeling great approaching our 30 week routine appointment with the OBGYN on December 16, 2020. A week before the appointment, I had began to feel a decrease in fetal movement, but figured the baby was just in a strange position. I decided to wait another week for our appointment and mention something to the doctor then. As the doctor used the Doppler to listen to the baby’s heartbeat, she thought it sounded strong. However, since I was experiencing less fetal movement, she went ahead and had me transferred to an ultrasound tech to make sure everything was okay.

I remember the complete silence as the ultrasound tech was looking at the baby. She didn’t ask any questions or make any facial expressions for an hour and a half straight. This was the longest ultrasound I had ever experienced. At that moment, I knew something was wrong.

After returning to my room, the doctor walked in and said the baby was very small, and that things did not look good. I was then transferred to the Birth Center at Advent Health.

Upon arrival, I was immediately hooked up to monitors and kept on bed rest. Multiple, high level techs performed two more detailed ultrasounds and discovered I had amniotic bands, baby had an abnormal heart defect, and was very small.

We were in shock, but remained calm as we knew things were going to be rough. After staying one night at the Birth Center, the doctors decided it was best to have me transported by ambulance to Children’s Mercy in downtown Kansas City. They knew we needed the best fetal and neonatal care based off of what they were seeing on the ultrasounds.

Upon arrival at Children's, I was immediately hooked up to monitors with instructions to stay in bed. The next few days were filled with multiple specialists observing baby on monitors, as well as several ultrasounds being performed. We saw fetal cardiologists, OBGYN’s, neonatal doctors, genetics, and others. Our hearts were broken and our minds were racing as we tried to make sense of it all. We couldn’t even cry we were so in shock.

The next few nights were sleepless. Every time the baby’s heartbeat would go down, lights were flipped on bright, and multiple nurses would storm the room trying to maneuver the monitors into position. At times, I would have to lie in an uncomfortable position for hours, just to keep them directly on the baby. To say my body hurt would be an understatement.

As we approached Christmas things started to trend downward. Baby was becoming more distressed and the doctors were afraid her umbilical cord could be getting caught up in the amniotic bands, which could cut off the air supply to the baby. Prior to Christmas Eve we made the decision to find out the gender of our precious child and choose a name, for fear baby wouldn’t survive. We found out it was a baby girl!!! We immediately started coming up with names. After much debate, we came up with Journie May, because we knew we would be going on a journey with her. Little did we know this journey would be filled with so many ups and downs and that it would last as long as it has.

On Christmas Eve morning I was asked if I was ready to have a baby today? Of course I wasn’t ready, because I was only 30 weeks pregnant and Journie was small and sick. I was so scared. Doctors performed the C-section, Journie was delivered and I felt like I had been hit by a Mack-truck. Journie weighed only 2lbs 1oz when she was born. Doctors immediately transported her to the NICU and I didn’t get to see her until the next day.

Journie remained in the NICU for 3 and a half months. I spent an hour in the car traveling back and forth to Children’s every day while Chad remained working. There were so many doctors and new symptoms being discovered daily. Not one doctor could explain what was happening or why. They were all as perplexed as we were.

Now, a year later, we still don’t know what caused this to happen or what her future looks like. She has been tested genetically for every known syndrome and disease, and is a part of a genetic research study. So far they haven’t been able to find anything to explain her differences. What we do know is with Journie having 2-5 medical appointments a week, and many surgeries in the near future I am unable to return to work.

Due to scheduling and financial circumstances, we had to make the difficult decision to pull Tanzin (our 3 year old daughter) from preschool.

Thus far, at every single Dr.’s appointment, there have been new symptoms to added to Journie’s medical history with no explanation.

As of today Journie has been diagnosed with the following:

Metopic synostosis with trigonocephaly

Plagiocephaly

Brachiocephaly

Microcephaly

Slow growth of her brain

Tight muscles in her eyes, resulting in her having to get glasses

Low enamel of her teeth, and a fused tooth

Hypoplastic thumb, and congenital hand deformity

Dextroconvex scoliosis of the thoracic spine

Levoconvex scoliosis of the lumbar spine

Primary Tethered spinal cord syndrome

Dowling Degos Disease

A Missing disc in her vertebra

Ventricular Septal Defect of her heart

Unknown Genetic Disorder

The specialists we currently see are as follows:

Neurosurgeons

Plastic surgeon

Craniofacial

Ophthalmology

Dental

Orthopedic surgeon for hands

Orthopedic surgeon for spine

Occupational therapist

Physical therapist

Cardiologist

Neurology

Genetics

Endocrine

Neonatology

Pediatrician

Hearing and speech

At home care

With all of the medical obstacles that Journie has gone through and with all that are to come, we are so blessed! She is the happiest, sweetest baby ever! We have learned to live day by day with her, being thankful and grateful for each moment she is alive. We know we have a long, uncertain and scary journey ahead. I guess that’s why God whispered her name to us in the hospital on Christmas Eve. She is her name, Journie.

We want to thank everyone who has helped us along the way. All of the prayers, gifts, love, and support has made this experience bearable. God has blessed us with the best, and knew what he was doing when he gave us our baby girl.

We are hoping that by sharing our story it will connect us with others around the world who may have a child or know of a child who shares some of the same symptoms as Journie. The hardest part of all of this is the fact that even though we know she has a number of symptoms and medical differences, we are still no closer today then we were a year ago to finding the total truth behind this medical mystery. She may very well be the first of her kind, but that won’t stop us from trying everything we can to help our sweet girl. Every share and every donation will hopefully allow us to continue our search for answers. Thank you all again for your love and support, we truly do appreciate each and every one of you ❤️.