Caudill Family NICU Story in honor of Down Syndrome Awareness Month

EBF is honored to share another NICU family story this month. October is also Down Syndrome Awareness Month and it is an important month to us because we know that baby’s diagnosed with Trisomy 21 (commonly known as Down Syndrome) are at an increased risk of having major congenital issues that require more the intensive care at birth found in the NICU. We are thankful to Jessi Caudill for sharing her family’s story with us all.

As we celebrate Down Syndrome Awareness Month,  we would also like to share our NICU story. At forty years old all my dreams were coming true, my husband and I were finally having a baby!! Our prayers had been answered and we could not be more full joy. The pregnancy was moving along smoothly and, at 15 weeks, I was starting to feel like myself again. Morning sickness had faded and life was good! We decided we wanted to know the sex of the baby but opted out of the genetic testing. On November 8th, we learned we were having a son!! At this point, things were starting to feel real!! WE ARE HAVING A BABY BOY!!!! Around 20 weeks we were given the likely diagnosis for Down Syndrome as three soft markers were identified during the anatomy scan. We followed up with additional blood work and added Perinatology and Cardiology to our team. Our baby was in good hands. We felt so confident that all his needs would be met and he was being watched closely.  Being labeled “high risk” meant lots more opportunities to see his sweet face! We were thankfully cleared pretty quickly from cardiology. This was the most difficult window of waiting in the pregnancy. Smooth sailing now. Fast forward to February 28th for our regular appointment with the Perinatologist. With no warning, I was being admitted for steroids to mature our baby’s lungs and fluids because my placenta had started failing.  

I was absolutely shocked. I was scared. I wasn’t ready or prepared just yet. Procrastination is in my DNA. I was discharged Sunday on strict bed rest and told to come back Tuesday for another ultrasound. Family rallied and got the nursery ready at my orders. I was hopeful that the rest and extra fluids would help. At the follow up appointment, things had not improved. I was readmitted and the goal was to make it to 34 weeks. On March 8th, Ashton from Early Bird Foundation, Inc. visited and what a blessing she was. I was terrified. Everything was moving too fast to process.  She helped us prepare for what was to come with life in the NICU. 

On March 10, 2020 at 9:32 a.m., our sweet Andrew Case Caudill arrived weighing 4lb 6oz and 17 1/2 inches long. He was perfect and the most beautiful face I ever saw. Although our introduction was brief, it was incredible. It felt like an eternity before I got to hold him. I remember thinking he was so small and had so many wires. I felt so intimidated, yet never so happy. The cesarean bought me an extra day at the hospital. I was dreading leaving without our baby. DREADING IT. I cried the whole way home. Thus begins the NICU journey during a PANDEMIC. 

In my mind, I was thinking he is crushing all his goals, this won’t be for long. He was quickly off oxygen just gotta get this feeding thing down. Piece of cake. WRONG. The nurses and feeding therapist told me it would be the most frustrating process. I was trying to stay positive but it was not easy. 

I learned to not ask about a discharge date but to just enjoy our time together because, with COVID in full effect, we never knew how they were going to change visits. Policies were changing every day. I experienced a roller coaster of emotions daily, but tried to remain patient and, most of all, grateful for his amazing care. It was never easy leaving the hospital, but the confidence I had with our son’s care made it bearable. Learning to give myself grace was very important. Living at the hospital was not taking care of me. I was reminded daily that it was okay to rest. 

Having a baby in the NICU during the middle of COVID added to my stress. We felt so isolated and scared because we had to stay healthy or we could not visit our baby. Talk about living on a prayer. It was imperative. 

After a LONG 50 days, we finally made it to the finish line. It was surreal!!! It was bittersweet, as crazy as that sounds. I wanted nothing more than to be home, but I wanted to take our NICU family with us!! How would I make it without them? They assured me this was not the end of our relationship. Walking out those doors on April 24, 2020 with a healthy baby was incredible to say the least. NICU life is hard. But worth it. 

We give God all the glory and thanks for placing us in a hospital where we were so deeply loved and cared for. Thank you will never EVER be enough. 

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