June 4th reflections

Father’s Day and Kali is officially 4 and 5/6 years old today

This morning before Kali woke up, Mom and I talked some about the night of Nora’s death. I have yet to write much down about that night, though the emotions are clearly near the surface when I put words to the experience. I haven’t cracked my journal open for months and now the task feels daunting. On one level I know it is just my journal and doesn’t matter in the least. On the other hand I’m not sure how to even start. It feels so abrupt to write, “Nora’s dead.” Then it puts that dreaded fact in writing, in the place that has housed some of my more conflicted emotions about my journey through pregnancy and then Nora’s birth and short life. I keep bringing my journal along on various short trips and end up using a computer instead, maybe because the backspace key is such a handy feature when trying to put words to an experience as difficult as journeying with one’s own child through death.

I think about the night of her death numerous times each day. Sometimes the feelings that come along with it are ones of gratefulness. She didn’t suffer at the end. Jason and I were both able to be there with her. We were able to hold and touch and talk with her. We had medical professionals who were kind, compassionate, available but not intrusive, and ones that seemed to recognize on some level that we were journeying through a sacred time and they were there to help the space to stay sacred and to be disrupted as little as possible by the medical aspects of the journey (which at the end were merely pain control and comfort care for Nora).

At other times I’m overwhelmed with a feeling that I could never do that again. Ever!! This is where the comparisons with the births of our two daughters start. Kali and Nora’s births, though different, were both amazing experiences. Painful. Beautiful. Challenging. Filled with mystery. Peaceful. Life altering. And after each, in the days and weeks following when I would reflect back on them, I couldn’t help but think at times, “I could never do that again.” Nora and Kali’s births brought out strength in me that I didn’t know that I had. Nora’s death did the same thing. Our daughters have gifted me by allowing me to see my strengths more clearly (as well as my weaknesses, but that’s the subject of another reflection!).

Tuesday, June 3^rd brought more changes in Nora. She seemed more tired, less aware, more agitated if we didn’t keep on top of the medicine regimen. We had called family and a few close friends, inviting anyone who wanted to come and say goodbye to do so. Some of our siblings chose to savor their memories of Nora outside of the hospital, and we respected that. Others wanted to see her again and we wanted to honor that choice as well. By about 10pm Tuesday evening the last visitors had left. It had been a big day for us and Nora and we were ready to turn our attention fully to her care. She had been aware of some of the visitors that day, particularly when baby Phoebe visited in the afternoon. But soon after that she seemed to draw more into herself. By the time her cousins Joshua and Sabrina came she really was not very alert or responsive (though she would still express needs as they arose).

Soon after everyone left, Jason and I talked about how we wanted to approach Nora’s care from here on out. We had agreed a few days earlier that as long as Nora was enjoying quality time with people (and all her little stuffed animal friends and baby toys), we wanted to make it possible for her to do that with as much ease and comfort as possible. If we noticed that things were changing such that she was not able to enjoy life, then we wanted to be responsive to that. One of our care providers at UVA said to us at one point that sometimes what we are doing when we care for people is not prolonging their life but in fact we are prolonging their death. Jason and I were in agreement that we saw no reason for us to prolong Nora’s death. While we wanted her presence with us, it felt selfish and not in her interest to keep her breathing once her quality of life had diminished substantially.

As we rearranged Nora’s room to be more conducive to being close to her, I can’t say that Jason or I knew that Nora would die that night. However, I think we both sensed that the end was nearing. It might sound crazy and there is really no good way to say, but I mentioned to Jason that I really liked birthing our children at night and that if I had to make such an awful choice that I think I would “like” death better at night too, when the rest of the world around us is sleeping, more or less unaware of the journey to a beginning or an end that we are on. And in a hospital setting the difference between night and day is really a night and day difference. It is quieter (no one coming in to bring an unappetizing food tray or loudly changing our multiple trash bags, no teams of rounding doctors, residents and medical students, no one calling to check on us or stopping by to visit) and naturally more calm; time seems to move at a slower pace.

We had both noticed the changes in Nora that day and what seemed to be more rapid progression towards needing more and more oxygen and more and more medication to keep her oxygen levels up and her body and mind comfortable and at ease. We chose to increase her medication for anxiety and pain, knowing what that meant (that our time of her being alert and fully aware of our presence with her was probably over). At the same time we also chose to cover the monitors and have them turn all the alarms off in our room so that we could focus on Nora and not a number. She had been up to at least 3 liters of high flow oxygen for a good while now and had been pulling at her nasal cannula more, which we figured may have been a sign of irritation with the higher flow of oxygen. So in addition to being more liberal in using medication for her comfort, we also bumped her oxygen down slowly.

Then we did our best to savor our time with her, as much as you can savor what you know are likely your last hours with your baby. Jason and I talked to her and we talked to each other. We told Nora how brave she was and that she could do it. We told her that she didn’t need to hold on anymore for us. We told her that we loved her and that Kali loved her and that so many other people loved her too, even those that wanted so much to meet her. All the while she held onto her binky and fiddled with it, as she had done consistently for many days. We felt her little head, the yet unformed bones and the precious tufts of hair that swirled this way and that. It was hard to believe that she was slipping away from us.

Each time we went to the door our nurse came to us in minutes, though never coming before she saw us beckon. We would ask her what the monitor was saying, and clearly the progression was rapid as she went from hanging out in the 70’s to 60’s to 30’s and downward. Was it helpful to know? Is it helpful to know when one is in labor and you are at 3, 4, 7, 9 centimeters? Did it better prepare us for the end?

Sometime early in the morning we had given Nora her first dose of morphine through the feeding tube. It wasn’t long after that that the pump alarm went off. She was on such a small amount of milk at that point (about 17cc’s/hour) and so the medicine and food was going in pretty slowly. Well maybe it had never been tried before, but clearly morphine and breastmilk don’t mix so well. The milk had curdled or reacted in some way that made it thicken to the extent that it had completely clogged the line. There was no flushing it and getting it restarted and at that point it didn’t seem necessary or helpful. So Nora was free of one tube! Thankfully they had very small doses of medication that could be given orally and absorbed through the skin of the mouth for very quick relief.

The final time her nurse, Molly, came in she told us that her blood oxygenation levels were in the teens. We knew that her heart could not work hard enough to keep her body going much longer. I wanted to hold her. I wanted her to be close. I wanted her to know that we were not abandoning her. We removed the monitors that had for days been our indication of her well-being, or lack thereof. And finally we removed the oxygen. I wanted to hold her with nothing attached to her little body. I wanted her to be as she was the first time I held her – just Nora. Nora in all her mystery, in all her complexity, with all her challenges, and with all her beauty.

Her breathing was labored and slowing down, but her body was relaxed. I was not so relaxed and at this point started relying pretty heavily on Jason to stay calm. It wasn’t that I thought he could make everything better. It wasn’t that I thought there was anything we could do to keep us from traveling this awful path. It would be painful, no doubt about it. When I was in labor with Kali I was 10 centimeters dilated and pushing and so scared about that “ring of fire” I had heard enough about to know I wanted to avoid. But there is really no way around it. You have to go through it. Nora had to cross over and I was going to feel and hear those last breaths.

Her body suddenly felt as if it had doubled in weight and she felt heavy in my arms for the first time in her life. I looked down and her eyes told me immediately that she was gone. It scared me. Her breath continued slowly, weakly, fading… I wasn’t prepared for this. Was she alive, was she dead? What does it mean to be alive, to have died? Clearly the little body I was holding was no longer inhabited by the little girl I knew and loved.

There have only been a few times in my life when I’ve been totally unaware of those around me, and not cared a bit what they thought of me. Thank goodness two of those times were the births of our daughters (It came in pretty handy right at the end of Nora’s birth when I was descended upon by doctors and residents, all of whom happened to be male and most of them looked a good bit younger than me). There in that room on 7 West of the same hospital in which she was born sobs wracked my body. I wanted her to live and I wanted her to die, to get this immediate excruciating pain for me over with. And then it was over. But I was scared to look at her again. I didn’t want my final memory of her to be her eyes, vacant of life and her personality and spirit. We laid her down on the mattress where she had spent her final night between us. We covered her with one of her little afghans.

Had the storm been raging and we had not noticed it or had it just begun? The mountains around us were lighting up and the rain coming down in torrents. Jason and I held each other and looked out at the storm. I had an emotional response to being away from Nora’s little body. Was I abandoning her? Where was she? Maybe I was closer to her as I looked out at the storm, at the sky and the mountains and the rain and the lightning. I returned to her side, and looked at her as I stroked her feet and cried. After some time had passed I asked Jason what we should do – should we go tell them? He assured me that they knew; they had heard me (the sound only of a mother grieving the loss of her baby). However, they respected our process and did not come until we went to get them.

The next several hours were mostly a blur of activity and once again visitors. Though this time it was all the medical professionals coming to express their condolences and also grieve with us. Nora had clearly touched many lives and endeared herself to more than one nurse. And we had made friends too. Believe it or not, we miss them. I don’t miss the hospital. I don’t miss the machines and medicines. I don’t miss the food. I don’t miss the wastefulness. BUT I miss the people. They had shared with us some of the most intimate and painful moments of our life to this point. They hugged us, shed tears with us and talked about how special Nora had been. I imagine many of them will never look at a binky in the same way again after watching Nora interact with one.

Somewhere in there they came and took her body. We had more papers to sign. They brought back hand and foot prints for us and a lock of her hair. We started packing to go home. Going home?! Going home without Nora, for good. In some ways it felt like we were closing one chapter of our life and entering a new one. In some ways it felt just as unpredictable and scary as the last, just a whole lot simpler.

Letting go of Nora leaves me feeling empty inside. But there was some letting go that left me feeling relieved (slightly guilty for experiencing that sensation, but there it was nonetheless). I can’t say I was looking forward to continuing the application for Medicaid and SSI. The amount of medical paperwork we were accumulating had been baffling me for weeks already. I still hadn’t figured out the two home health companies we were working with and when I was to call them for what supplies. She had medicine that needed to be shipped to our home but I didn’t even remember where it was coming from. And the oxygen and the tubes and the sounds of the machines running… When was I going to actually learn to attach and detach her feeding tube without cringing or feeling faint. Crossing off appointments that were already scheduled for the summer felt strangely good and bad all at the same time. How could I hold all these feelings together? How do I continue to do that?

So birth and death. Both full of mystery. Both unpredictable. Both with the potential to be beautiful and awe-inspiring as well as scary and excruciatingly painful. I labored when I birthed Kali. And in many ways it felt we labored with Nora in the hours before she took her final breaths. Prior to Nora’s birth and death I had so much apprehension about experiencing these moments of my life in a large medical facility. But I’ve learned that a sacred and precious and protected space can be created anywhere.

At the end of a birth, you have a baby. It makes all the pain worth it. You soon forget how hard it was, or many of us may think harder and longer before embarking on the journey all over again. But what about the death of a baby? What do we cling to now? Is there anything redemptive? Can we keep her alive with our memories of her? Can we honor her by the way we live from here on out?