Stephanie's Story of Bravery

“According to the Oxford dictionary, brave is defined as "Ready to face and endure danger or pain, showing courage."
I can tell you I was in no way ready to face the long NICU stay that lay ahead of us after having my daughter Elliana in June of 2022.

My pregnancy was pretty normal until the very end, I had increased fluid levels which was not something I had experienced in my previous three pregnancies. The doctors didn't seem overly concerned but opted to induce me if I hadn't gone into labor by 39 weeks. The morning of 37 weeks I went into labor at home, made my way to our local hospital and checked into the maternity ward. My labor was the most comfortable and easiest of all of my four children, until she was out. I knew it wasn't good watching the doctors and nurses scramble and carry her away before letting me hold her. She was purple, not crying and so small weighing only 4lbs and 14 oz. They took her to their neonatologist on site and she came in to inform us that she was being transferred to a larger hospital with a NICU, Rainbow Babies and Children's. She explained that they could not pass a tube down her throat and that there was a possibility she had something wrong with her esophagus. The transport paramedics were at my bedside with her in a transport isolette within 45 minutes, I never got to hold her and I was stuck until I could be discharged and my baby was on her way. I fought to get discharged within hours of having her, against their advice to be with her.

When I arrived at the NICU downtown and walked into her room it was terrifying. So many people, teams of doctors and nurses, doing so many tests and talking with so many medical terms I had never heard before. By 11 that night we were met by a pediatric surgeon that informed us that she had a condition called TEF/EA and would require an emergency surgery the next day. Basically her esophagus never connected to her stomach while she was developing and it ended up connecting to her trachea (windpipe) and then ending in a sack. She couldn't swallow, she couldn't eat, and this was just the tip of the iceberg. That evening the nurse that was taking care of her told me to take her picture, and at that point I had realized I never had the opportunity to do that. That picture will forever be the hardest thing I've ever seen but I am so thankful she told me to take it. The next day those NICU nurses fought for me to be able to hold her until her surgery, and that was the first time I got to hold her, and the last for 31 days. 

The surgeon came in to speak to us before the procedure, I asked him what her chances were to make it out, and his answer was gut-wrenching. He said he would do his very best to bring her back to us, but he was not going to make us any promises. Her surgery was over five hours long, and every second I cried and prayed for her to just make it out ok. They brought her back to us on a ventilator, chest tubes, sedated and semi paralyzed by medicine. She was not allowed to move or be moved because of the chance that her repair in her esophagus would tear. For two weeks we just sat by her side and waited for her to heal, I read to her, prayed over her and held her little hands. It was so hard to be brave for her and for my three boys at home but there was no other choice.

Two weeks post op she went in for a test to make sure her esophagus was not leaking and that her repair was healing correctly, and thankfully it was. They had attempted to remove the ventilator but she was unable to breathe on her own and had to quickly replace it, and this felt like ten steps backwards. We ended up finding out she had developed what was called a chylothorax and her chest was filling with fluid and putting pressure on her lungs which was causing her to struggle to breathe. The surgeons had to come and place another chest tube bedside to drain the fluid to allow her to breathe even on the ventilator. When we asked how to fix this we were hit with the awful news that most of the time, it's just time to let it heal, which could be days to months.

 Again we felt extremely defeated. Every time we were closer to going home we were set back. 

She was unable to eat by mouth or take any type of breast milk or formula because it would increase the fluid output in her chest, so she remained on TPN, IV nutrition. During this they did test her from head to toe and check out everything in her little body and we did find out she also has a syndrome called VACTERL, this meant she had vertebral abnormalities, in her ribs and spine, she had anal abnormalities, cardiac abnormalities, and TEF. We had no idea what life was going to look like for her, or for us. It took a few weeks for her fluid to stop draining and then to let her begin some ng feeds with a special formula. We finally got to hold her after 30 some days and even with the ventilator and all the tubes and wires the NICU nurses always advocated for us to be able to be close to her and they helped move her from her bed to our laps and back. 

Thankfully her cardiac abnormalities, while important to be aware of, are not life limiting and we will monitor her closely as she grows. Her vertebral anomalies also are not of immediate concern she will be monitored by an orthopedic for mild scoliosis but as for her ribs and vertebrae being misshapen they will just be that way for her. We are now at one year old getting ready to take her for a surgery to have her anal abnormalities addressed and hoping that will correct those issues. Her TEF/EA will always be something she will monitor life long.

61 days later she was finally able to come home and meet her family. It was the most traumatic situation I have ever experienced but it most definitely made me stronger as a mom and as a person. We still are navigating health issues and have some struggles but she is thriving and I couldn't be more round of the sweet little one year old girl she is becoming.

If I could say anything to parents in the NICU, it would be that while every situation is different, we are all the same, and we are forever a community of parents that are some of the strongest and bravest people in the world, so lean on each other and tell your story because it matters!” NICU mama, Stephanie