Story of Nox's Journey from his mom

Nox’s journey began on June 28, 2025. However, the worry of survival for Nox started

when I had an emergency cerclage placed at 20 weeks due to already being 2 cm dilated. We walked into my anatomy scan thinking it was going to be a routine appointment, only worried about how the baby was developing. However, I was very wrong when they told me I was dilated and the membrane was showing. I was rushed into the OR and could only hope to stay pregnant until 36 weeks, when they would remove the stitches. Nox, however, had other plans.

On June 22nd, just days before we would learn how much our lives were about to

change. Starting with moderate pain in my back which only became worse. We later found out, the low back pain that I was feeling were contractions. On the morning of June 27th, I woke up, got in the shower, and noticed that I had started bleeding. I immediately got out of the shower and went to the hospital. I was told I had a UTI, but everything was going to be fine. With that being said, I was kept overnight because every time I had a contraction, Nox’s heart rate would drop. I was given a dose of betamethasone, a steroid used to help develop the baby’s lungs, at 2:00pm just in case he was going to be born early.

The next day, I woke up and noticed the bleeding was worse. I asked the nurse if it was

normal and was told, “It’s probably due to irritating your cervix from checking your stitches.

” No follow up occurred, despite my concern. We stayed at the hospital until I was able to get my second round of steroids, and then we went home around 3:30pm.

At this point, I was exhausted and mentally drained from the pain and lack of sleep. The

pain was still worsening and becoming unbearable, but I managed to get a few hours of sleep. At 11:30pm, I woke up to an incredible amount of blood, and we rushed back to the hospital. Being in the labor and delivery triage room-being examined, waiting to hear a verdict, anticipating the answer to “Is everything going to be okay? -finally led to the words no mom wants to hear at 26+5 weeks pregnant: “Your baby is coming tonight. ” Tears flooded my eyes, and I remember looking over at my partner saying, “No, no, no. He can’t come tonight!” At that point, we had no idea what that would mean for our sweet boy. He was born in the early morning hours of June 28th, 2025.

Like any mom, I was full of worry, paranoia, guilt, and fear about what was happening.

After he was born, I was too scared to look at him. Staring up at the bright lights in the freezing OR, nurses telling me, “He’s here! Look at your boy!”

-I just couldn’t bring myself to do it because I was terrified something was going to go wrong. They took my son to the NICU, and I was taken to the third floor to wait for my partner and the neonatal doctor to return. I was told everything was fine and that they were surprised by how well he was doing and how feisty he was. Of course, the question everyone wants to know-“When is he going to be able to come home?”-was asked, and we were told there was no specific date, but to anticipate his due date: September 29, 2025.

Fast forward through the long, sleepless three months to his due date, he was nowhere

close to coming home. He had developed chronic lung disease (BPD), and he had a hole in his heart. There was so much back and forth and so many unanswered questions about what the best plan was. I became angry and envious of the world and couldn’t understand how we had fallen so far off track with his development. I could never blame the NICU staff-they were trying so hard and doing such amazing things. They wanted him home just as much as we did.

Primary Children’s in Salt Lake City was contacted for a specialist’s opinion, and they felt it was best for him to be transferred to have a “Piccolo” procedure to close the hole in his heart. We went back home and packed a bag because there was a chance he could be transported at any time. Several days later, on October 10th, we got the call that Nox would be going up north for the procedure. We planned on being at PCH for a couple of weeks, but it turned into a four week stay. While his heart was responding well to the procedure, his lungs were still struggling to get rid of CO2. This is when the doctors discussed the possibility of Nox needing a tracheostomy. Since this wasn’t something that would happen right away, we were transported back to St. George Regional on November 6th, where he stayed and received treatment for 16 days. As he slowly regressed, another phone call was made to Primary Children’s.

In the late hours of November 21st, I received a call from the neonatal doctor at St.

George Regional saying Nox would be flying to Primary Children’s that night. Nox and I are now four hours away from our support system and the people we love. He will be having a

tracheostomy after all. The recovery from this surgery is 6-8 weeks to ensure the wound

matures and he will be safe. Thankfully, this should be the last step before he is able to come home. After the surgery, we will receive all the education and gain the confidence we need to finally, and more importantly, safely bring him home.

All the struggle, pain, and uncertainty will finally come to an end. Nox will be coming

home with a temporary trach and a feeding tube. Our journey will be over 200 days long by the time he is finally able to come home-but that’s over 200 days we have spent watching our child grow into the sweetest, strongest baby. As hard as it has been, we are incredibly thankful for the doctors and nurses in St. George who have loved and cared for Nox as if he were their own. We also cannot express our gratitude enough to the surgeons, doctors, and nurses at Primary Children’s who have provided Nox with the interventions he needs to come home safely.

Having a child in the NICU has made me realize the lack of awareness of premature

babies. This is a life nobody thinks they are going to live. The world of the NICU is simply not

talked about enough, and it is no joke. Only 0.7% of babies are born before 28 weeks-these are considered “micro preemies. ” One in ten babies are born premature, before 34 weeks but after 32 weeks. Most people are unaware of how common premature births are. I was. Nox’s life has changed ours forever. It has been a very long and bumpy road, but we are so excited to finally be so close to bring him home.