Our NICU Journey Begins
We obviously knew Karlie would be in the NICU once she was born but had no idea how long she would need to stay. We were prepared for a long stay but hoped by some miracle it would only be a month or two. While I was pregnant the omphalocele was the main focus but once Karlie was born it became the least of their concerns. Karlie’s breathing became the biggest hurdle. She was pretty stable so they took her breathing tube out and put her on high-flow with a nasal cannula. This was great news to us! We were so hopeful that her lungs weren’t as bad as originally thought. Karlie lasted just a few days on high-flow before they moved her to CPAP. She was still working too hard to breathe so they put a breathing tube back in about 3 days later.
Karlie’s breathing remained stable for a few weeks until she got very sick with pneumonia. One downside of breathing tubes is that they can get easily infected with bacteria. She required even more support from the ventilator and had to be heavily medicated. What I remember most is the edema in her face. She always looked so puffy and just miserable. She finally started to get better and required a little less support. Shortly after she recovered, her breathing tube got re-infected. She now had pneumonia for the second time. This time they had to put her on a more intense ventilator called a VDR. It was large, strange, and loud. It sounded like a sewing machine constantly running. It’s a sound we will remember for the rest of our lives. Karlie slowly recovered from the pneumonia but had to stay on the VDR for roughly a month. I wasn’t able to hold her once during that time because she was just too unstable and sick to get out of bed. All I could do was touch her and provide comfort through containment.
Karlie’s breathing started improving every day so the doctors decided to try her on CPAP again. I was so nervous for her and so badly wanted her to remain stable breathing on her own. She did remain stable but she was miserable most of the time. The CPAP was so uncomfortable for her and made her so angry. If you’ve seen what CPAP looks like on babies you can understand why she was uncomfortable. The CPAP cap was so snug on her head and the mask constantly slipped down her nose and onto her lips. One positive thing about Karlie being on CPAP was that it was much easier to hold her. It didn’t require as many people to get her out of bed so I was able to hold her more often. Karlie remained stable on CPAP for about a month. She was stable, but not thriving. She was still using a lot of her energy just to breathe. It felt like we were running in circles and making no progress.
Any time we weren’t at the NICU we could see Karlie on a camera through an app or call the nurse for updates. I felt so guilty whenever I was at home and not with her. It was a feeling I could never shake. I spent every day in the NICU with Karlie and only missed 1 day during her whole stay due to ice and snow. Thankfully we only lived about 20 minutes away so I could spend the day with Karlie and then go back home to eat and sleep. It was not the most fun routine but it was what I had to do. I hated being away from her and wanted to be as involved as I could in her care. I know she was comforted by my voice and presence so I was determined to spend as much time as possible with her. I saw many other babies in the NICU who were always alone in their rooms and it broke my heart. I couldn’t bear the thought of Karlie being alone.
