Life in the NICU

Since the last update so much has happened while very little has happened at the same time. As I write this I am currently sitting in the Ronald McDonald Family Room trying to gather my thoughts. For anyone who has been in a hospital for any amount of time you know how disorienting it can be. Now add the complexities, realities and everything related to the NICU and that disorienting feeling becomes more of a drowning feeling. Time has this weird way of stopping and at the same time flying by. While we feel like we have been here forever, the reality is we haven’t even been in the hospital a week yet. We hit that milestone tomorrow (Thursday) and I’m not sure that’s a milestone I want to track right now! Each day brings new hurdles to face, changes to celebrate and more waiting. There are some things that change constantly while others that never change. Shift-change happens at 7 with the changing of day and night nurses. Rounds happen around 9:15 with the medical team coming to give and get updates, allowing us to ask our questions and let us know what the days activities and plans are for Everly. ECHO’s and X-Rays for bigger tests but mostly it is just the hourly changing and monitoring of medicines, clearing and checking tubes and overall just monitoring Everly. One of the craziest parts of all of this is Everly has a dedicated nurse. The only patient she has to care for is Everly. Talk about personalized care! The last few days we have had the same nurse during the day and we absolutely love her! She is so sweet and has taken care of not only Everly but us as well through the process. We find ourselves each day loosing track of time as members of her medical team come and go, snapping our attention to the clock. Has it really only been 20 minutes or has it really been 5 hours? Even just trying to write this post forces me to realize just how much of a black hole NICU life is. Trying to remember everything that has taken place, in its appropriate order has been a challenge. So let’s face this hurdle head on and see if we can get you updated on what has been going on with Everly.

After her grand entrance into the world and her quick placement into the NICU a lot of nothing happened. Which is a good thing in this case! Even with all the advances of medical technology for CDH babies, there is no definitive answer to the severity of the diagnosis until that baby is here and can be measured outside of the womb. It is a lot of hurry up and wait. Be patient and wait some more. Our weekend in the hospital was spent bouncing back and forth between the NICU and Postpartum floors as we quickly learned how dead and quiet the hospital is on the weekends but when Monday came, it came with a roaring force as we walked back onto campus to the hustle and bustle of people everywhere! Our Monday was exceptionally busy, with significantly more visitors in the first three hours than the entire weekend combined. Numerous medical professionals came and went providing updates, allowing for merely 10-minute intervals of uninterrupted time. While the rapid influx of information has been overwhelming, we appreciate the transparent communication throughout this process. Surgery is tentatively scheduled for tomorrow (Tuesday), pending Everly’s successful completion of some preliminary tests. It has been so encouraging to hear from the medical team how well Everly was doing all things considered! The biggest takeaway from Monday was how flexible you have to be in the NICU. Things are constantly changing and evolving. One of the big tests Everly needed to pass to be ready for surgery didn’t happen. In turn, everything that was relying on the results of said test were now unsure.

Tuesday was hectic as postponed tests were scheduled for early morning and surgery still tentatively scheduled for noon. The constant movement of the medical team in and out all while communicating helped pass the time and anxiety for us as we once again waited. The morning seemed to drag on with anticipation of whether or not surgery would happen but when things started moving, they quickly ramped up. Everly had not only passed her test but even surprised the team with how well she did. A little after 11am we met the surgeon that was going to operate on Everly. He explained the procedure and what was going to happen over the next 3-5 hours during the surgery. More of the medical team came and went as equipment was being dropped off and wheeled to Everly’s room. Anesthesia was the final team to meet with us and explain what Everly would and wouldn’t feel. Shortly after, our room was filled with a large medical team. It was time as our nurse told us to say se you later. The team was very respectful of our time with Everly as we told her how loved she was and how great she was going to do. As they wheeled my 4 day old daughter out of the NICU, her once crammed room was now suddenly empty. No tubes, wires, beeping…nothing. London stayed behind in the room as I followed the team out of Everly’s pod, down the hall and into the Staff Only elevators. The immense and overwhelming feeling I had as I watched the doors close cannot be described. The ache and pain in my heart was too much. As I walked back to Everly’s room I broke. Ugly weeping in front of some poor family sitting in the waiting area outside the NICU pod.

When I walked back into the room, the emptiness I felt was matched by the same emptiness of Everly’s room. When I saw London I knew she also was feeling the same emptiness. We took a moment, gathered our composure and walked out of the NICU. No sense in sitting around for 5 hours waiting. There would be plenty of time for that. We decided the best thing for us to do was go to lunch and grab some much needed supplies. During lunch we received a call from the OR nurse letting us know that Everly was doing great! A huge sigh of relief for both of us. We enjoyed our time out but wanted to get quickly back to the NICU and wait for our girl to be done with surgery. I don’t know how long it was but the look on our faces when the team wheeled her around the corner and back into the room could probably have been seen for miles. Surgery was a success. Like always, Everly rocked it! The surgeon came down and talked to us about the surgery and even walked through it with pictures from Everly’s procedure (If you’re weird like me and want to see them, let me know and I can get you a copy).

Wednesday (current day as I’m writing this) was as normal of a day as they come in the NICU world…or so we thought! We arrived this morning before rounds and was eagerly greeted by our favorite Nurse Kali who filled us in on how Everly did through the night. We weren’t surprised to hear that it was another great night for her. When rounds started we got to hear from E’s medical team about where she was at and the plan for the day. We were absolutely floored when we heard that today we could hold her. We have had minimal interaction with her. A diaper change here and there and a cupping hand on the top of the head has been the extent of it. To hear this from the medical team was an incredible win for us to have that direct contact and connection. Around noon the nurse and Respiratory Therapist came in and worked together to get Everly safely into London’s arms. For an hour I watched as London and Everly finally got that special time together. It was just as enjoyable for me to get to watch the interaction as I’m sure it was for London to get to hold her. I will get my turn tomorrow because Everly is on a ventilator and the process it takes to move her, only 1 parent a day gets a turn to hold. It was truly my joy to watch London have that time and Everly respond so well to it! The next big test we are actively waiting on is post surgery poop….yup I said it!

For now, it’s more waiting as the lady of the hour is the one who dictates everything that happens and I am totally ok with that! We only move as fast or slow as she does. When she rocks it, we celebrate and when she needs an extra day, we give it to her! For now, I am once again elated and celebrating how well Everly is doing. We know there will be challenges and hurdles ahead as every NICU baby has their regressions. We continue to be grateful to everyone who has been praying and following along in our journey!