Her care was involved, and her diagnosis’s were vast. We were forced to parent our daughter in a way we never dreamed. We looked to the professional to tell us if she was comfortable or if she needed something. We had never met these people, yet her precious life was in their hands. They were able to give her what we could not which made my heart ache. I watched our life unfold in front of me. We had a plan, but this was not it. Her life was a delicate balance of numbers. Being by her side and trusting the process was what we could do for her, so we did.
Nevy’s tiny lungs were not ready to be here, due to her early arrival, so she was placed on a ventilator which did the work of breathing for her. To us, the vent was just extension of who she was. However, it did produce challenges in cuddling and caring for her. It took over two months before her body could handle being held. I dreamt about what it would feel like the to hold her for the first time, and longed to feel her skin on mine. When the day finally arrived life was instantly better. We fit perfectly. It was the first time in her life my fears subsided, and I truly felt like mama who knew just what to do for my sweet girl.
The days started to move faster as her health improved. We began to feel confident that not only was she going to be OK, but the there was a chance that soon it would all be a distant memory, and she was going to thrive. Our sense of normal had shifted over the course of Nevaeh’s life. We became comfortable with the obstacles and challenges that being a micro preemie presented and like a warrior princess she seemed to knocked them down one at a time.
We never asked when she would come home. From day one, we knew we knew it would be a long road and staying focused on the present moment was essential. We held hope close to our hearts and trusted in the medical staff around us. Because I was so active in her care, I knew we had rounded certain corners and truly believed she was coming home. Her numbers were impressive, she was maintaining a healthy body temperature in an open crib, taking most of her feed from a bottle and had even nursed a couple of precious times. Our meetings with OT&PT created so much optimism. While they could not rule out challenges she could face down the road, they were extremely pleased with her outward appearance and functionality. She was perfect.
June 30 2006 was THE day we had waited for. Despite all the extreme ups and downs, DNR’s, inabations, extabations, surgeries, x-rayss, labs, thearpy, pokes, prods, and feeds, we were finally told “It was time to think about going home.” It was an idea we never let ourselves entertain due to the challenges she had faced but something we had always hoped for. You do not just leave the hospital one day after you have been there for five months. I sat with her Doctor and listened to list we would need to complete. She needed to achieve a certain amount of feeds on a bottle or a feeding tube would be necessary. We needed to get the amount of Oxygen she as receiving to a lower liter flow. We needed to go through a CPR class and pass the sleep study. I would need to schedule appointments with specialists involved in her care for important after
The EKG had already been ordered for that day, and I decided to stick with Nevy while it was being done. I remember vividly picking her up and whispering the good news in her ear while we waited for the tech to arrive. The test was about 15 minutes long. I chatted with the technician and told him all about Nevaeh. She was so sweet during the procedure and allowed him to get all the shots he needed. I learned early on that asking anyone other than her Doctors what the test said would get me nowhere. She had never had a “baseline” procedure, and I figured there was nothing to worry about or hide. Without thinking, I asked if it looked okay and turned around with a smile and said “It looks perfect.” I was elated!! I scooped our girl up, kissed her head and told her I needed to leave and finish her nursery.
I stopped at home to pick up a color swatch for her bedding and paused in the bedroom that had sat empty for so many months. I opened the windows and welcomed the possibility that was before us. The bedroom WOULD become Nevaeh’s very own nursery. Her bed space at the hospital was small and without doors. Between the medical staff and other patients visiting guests, I had never had the opportunity of being alone with her and I wanted the experience so badly. I could not wait to walk across a room with her in my arms or to be able to pick her up without needing three people to help me. My hopes were higher than they had ever been, and I truly believed she was coming home. I shut the window and set out to select the finishing touches for HER room.
Even the best laid plans fall to the wayside. Just one day later on July 1st, we were blindsided with news that the EKG was far from “perfect”, it was terminal. Her heart had suffered tremendously from the time she was on the vent. The damage was irreversible. The very thing that saved her life would ultimately end up taking her from us. As I sat there watching her Dr.’s lips move I was at a loss. Did we miss something? Had I not done enough? Was she sicker then we acknowledged? Did I get ahead of myself by thinking she was coming home and create too much pressure on her? The answer to all of these questions was of course no. Our sweet girl had fought a noble fight. There were no more medical miracles for us to call on, she was tired and ready to rest.
From the day Nevaeh came into this world we wanted only what was best for her, and it was never far from our minds, that what maybe the best for her, would be the hardest for us. We went into every consultation, operation, good day and bad
Everything else had gone so slow but those last seven days went to fast. We stopped all medical intervention that had been supporting her life and focused on making her comfortable. Tommy and I took those last days to tell her our stories, hopes and dreams. We prepared ourselves as best we could for what was coming and called on our family and friends to be by our side. We asked them to be our strength in the moments we fell short and to hold us in the moments we were weak. We came to terms with the fact that this was our experience and understood that our world would never be the same. She took her last breath in my arms on July 9th.
The months following Nevys death are a blur for me. My cries came from a place deep in my soul, and my sorrow consumed me. I felt as thought people looked at us the same way they looked at car accidents as they passed them on the highway. It was an expression of utter sorrow for us and sincere appreciation for themselves that it was not their car and being that had been demolished. I wanted to escape from everything, but I could not muster the strength to walk. As uncomfortable as it was, I had to lean into our support system and let people care for me in a way I could not care for myself.
People have said the most random things in an attempt to make me feel better. I know that most of it comes from a good place with strong intention, however; I would prefer someone ask me about a favorite memory then stumble on crazy statements.
It has taken me a long time to realize that even death does not dissolve the bond we have with Nevaeh. I am still and will always be her mama. I parent her from a different place than I parent my son who is with me physically. We honor her strength of spirt by sharing about her when ever possible.