Grace’s Story
O Warrior Stories
Written by: Kassie Autrey
Our Story: A Million Little Miracles
At our 10 week appointment, we saw our baby for the first time and heard that cherished heartbeat. It was small yet so distinctly human. In my eyes, it was a perfect little miracle. Afterwards, the OB told us there was an abnormality around the abdomen and extra blood flow to that area. We were immediately told all the worst case scenarios and referred to a maternal fetal medicine doctor.
At our 13 week appointment, they performed a diagnostic ultrasound. I could see even more clearly the defined features of our baby. It’s arms and legs and head. Every movement screamed of the life inside me. However, I saw the abdomen area and knew something was off. They printed photos for us but purposely left out photos of the stomach region. When the doctor came in, he shared the news that would change our lives. Our baby had an Omphalocele. The doctor really painted a horrible picture of what it was and the outcome and asked if we wanted to abort. My husband and I immediately declined. We were keeping our baby, no matter the outcome, and giving her every chance at life.
We left feeling defeated and hopeless but full of love for our baby. We researched everywhere looking for hope and we found it through O Warrior. I read everything on this website multiple times and sent it to our family. We knew that even with this diagnosis there was hope and abundant life!
We continued to plan, prepare, love and hope for our baby. We only did the general blood work knowing she would be extensively tested after birth and everything came back normal. At 15 weeks, we found out we were having a girl! We named her Grace (God's goodness) Elise (God's promise).
Everything progressed normally with routine appointments and ultrasounds. At my 26 week appointment, I was told I had excess amniotic fluid, Polyhydramnios, from our daughter not swallowing the fluid due to her omphalocele.
On the morning of July 20th, I called my OB with concerns around cramping and a change in discharge. I was only 28 weeks so they weren't too concerned but told me to come in that afternoon when they discovered I had premature rupture of membrane (PPROM) and was already several centimeters dilated. They immediately sent me to the hospital with hopes of stopping labor. My husband was out of town with the National Guard so we called him and he immediately started his rushed journey to the hospital. Within 2 hours of leaving the OB office, I was almost fully dilated and went into emergency c-section. My husband was able to make it to the hospital just as they started the operation. Our Grace Elise was delivered at 4:50 weighing 2lbs 5ozs.
After a quick glance at her inside a small isolette, Grace was quickly rushed to the adjoining children's hospital NICU. She was so small, thin and covered in tubes and wires. Our little miracle.
The following few days were a blur. Grace was seen by tons of doctors for head to toe evaluations, x-rays, ultrasounds of all her major organs, and extensive genetic testing. After everything came back, we were left with a list of unique things about Grace. The obvious one is that she had a giant omphalocele that contained her liver, stomach, and a few loops of bowels. She also had a PDA, ASD, and VSD, a Multicystic dysplastic kidney, a short middle finger, and all genetic testing came back normal.
When Grace was 5 days old I was able to hold Grace for the first time. It would be nearly 2 weeks later before Grace was stable enough to be held by her Daddy.
Over the next few weeks, we struggled to learn what Grace needed to thrive. She was intubated on a ventilator then oscillator, and back to ventilator for breathing support. She had a small brain bleed and diagnosis with Pulmonary Hypertension. She had a feeding tube in her mouth but due to her stomach being in her omphalocele she wouldn’t tolerate feeds and was given IV nutrition to sustain her the first several weeks of her life. We began a group to update our community weekly on Grace. One of our first big prayer requests was for her to tolerate feedings. One day on a routine ultrasound, they discovered Grace’s bowels and stomach had descended back into the abdominal cavity without any compressions or interventions! An answer to prayer and another miracle! The tried tube feedings and this time Grace handled them like a champ.
When Grace was 8 weeks old or 36 weeks gestation, the Neonatologist called a family meeting. Based on her CT scan the day before they determined she had severe Pulmonary Hypoplasia and that her little lungs had very little healthy tissue. Between lung, heart, and omphalocele, we were painted a very grim picture and again given options including transitioning to end of life care. We knew we would keep fighting for our miracle girl.
The following 4 weeks were some of the hardest. It included more family meetings and consulting a multiude of specialists to find the best path forward. We had a community prayer service where hundreds of people gathered in person and online to pray for healing and God to be glorfied in Grace’s story. We held onto a thread of hope. At 42 weeks, Grace went into surgery to recieve a trach and g-tube. Again, it was a rough week of recovery but then the small hope grew. We began to see the unfolding of Grace’s personality as she was no longer constrained to the limitations of an ET tube. We were able to hold her anytime we wanted (which was a lot), play with her, begin theraphys, and reach normal baby milestones. We know Grace is made for abundant life!
While the road has not been easy and we see setbacks all the time, Grace is without a doubt growing stronger everyday. Grace has overcome MANY mountains in the NICU. While she still has many more to climb, the Neonatologist have agreed she will soon be ready to transition home and be closely monitored there.
The road ahead is unknown, it will be tough (some say impossible), but we hold on to hope. We’ve seen a thousand little miracles and through God’s amazing Grace expect a million more.
