"And though she be but little, She is Fierce."

I had to write this entry. For myself, for Claire, and for all those that care for us. As emotional a task it was, the final chapter in Claire's life needs to be written. I honor her birth, life, and death in the telling.

Claire's morning on Thursday, April 12th began with our usual discussion with the doctor. Claire's CO2 levels had been rising and they had needed to increase the settings on the ventilator. The doctor said that she did not think that this was an urgent situation, but that it was worrisome. The steroid (Decadron) had been slowly weaned off and her increase in CO2 levels could be indicative of this. It had become clear that Claire had not shown the improvement hoped for with the medication and her symptoms were beginning to increase as a result. We also clarified our DNR orders with the doctor as a result of the discussions throughout the week. The doctor also informed us that the bacterial cultures taken a couple of days ago had all come up negative. Claire had not been showing any other signs of infection, but they would continue to watch her closely.

I had brought with me that morning a sweet pink elephant blankie given to me by Carol Christiansen at my baby shower. I arranged the blanket over Claire carefully so as to cover most of the tubing that surrounded her. We had a little photo shoot while Claire slept peacefully. I also took some pictures with a sleeper that said "Little Sister" that I had also brought that day.

After lunch, I insisted that it was Jerre's turn to hold Claire. It had been weeks since the last time that he had gotten to hold her. When we were finally told that we could again hold her, Jerre had said that I should be the one who should have priority. It was clearly time for Daddy to have a turn. While Jerre relaxed with Claire on his chest, I wrote in Claire's book that I had been keeping for her and watched them rest together. This was the book that I had started during pregnancy as a journal and I hadn't updated it since her birth. I began with her birth statistics and then said, "Sweet baby, I am so happy to meet you! You are such a beautiful girl. I am writing today finally after a long journey that continues. You are 28 days old today! Wow! It is so hard to believe. You are here in the NICU at Providence and they are taking very good care of you every day... Baby Claire, you are surrounded by love. I don't know a baby who has been more loved than you are. All of your friends and family are sending you love every day. I am sitting right next to you now watching you sleep peacefully. There are only a couple of things better than this! When you open your eyes and when I get to hold you in my arms. These are the best parts of my day. When I hold you, I try to make you feel all of my love for you. I am simply bursting with it and I know that you can feel me."

I went on to record the songs that I liked to sing to Claire, visitors that had come to see her, all about her big sister Julia and then a list of her "bag of tricks" that included yawning, sucking on her pacifier, squirming, getting mad, squeezing fingers, looking cute, putting her fingers in her mouth, and snuggling with Mommy.

Shortly after Claire was all tucked in again after her Daddy time, her oxygen levels began to drop dramatically. The nurse continued to have to turn up the amount of oxygen she was receiving in order to keep her level stable. Claire had been receiving about 25-35% oxygen and was now needing 95% to remain at an acceptable level. We had been getting ready to leave, but it quickly became evident that we needed to stay. The doctor was contacted and she ordered a blood gas test which tests the amount of oxygen and CO2 in the blood with higher accuracy. Claire's blood gas showed that her CO2 levels were extremely high. She told us that normally they could tolerate numbers between 30-40 and Claire's were over 100. Her heart rate was also incredibly high; higher than we had seen it ever before. She was averaging 180 bpm or more. Her appearance had also changed for the worse. For the first time, I looked at her and could see that she was clearly struggling.

We had experienced scary moments before, but never with such gravity. Essentially this meant that the ventilator, which was already nearly "maxed out" on settings, was not able to adequately support Claire. The doctor suggested that we talk about what our wishes might be and to call any family that we may want present. I also requested to speak with Claire's original doctor with whom we had formed a close relationship with over the weeks. Dr. Nicholson agreed with Claire's other doctor regarding her outlook. I cannot adequately describe the emotions that we were experiencing throughout these conversations. Jerre and I began the difficult task of discussing what we should do. Kate, our minister who had visited us several times during other times of crisis with Claire, came to the hospital and lovingly helped guide our conversation. We had been informed that Claire's time with us was coming to an end. She might hang on for another few hours or maybe even a couple of days, but she could not be sustained much longer. We could watch and wait for her heart to give out and her body to be run into the ground, or we could make the painful and heart-wrenching decision to remove her breathing tube.


I asked Kate if she would perform a Child Dedication Ceremony for Claire; a ceremony that is usually done in front of the congregation. Kate purchased white roses, the same type of flower used in the ceremony at church, from the hospital gift shop. Kate asked, "What is the name of this child?" (We responded with Claire's full name.) "Claire Elaine Zahm, we welcome you into this world and give you this name forever. Claire, you are unique. There is no one else like you in the entire world. Your parents, your family and the community of First Unitarian welcome you in all your uniqueness and all of your beauty. We come together now to formally recognize you, Claire Elaine Zahm, as one of our own, as an intregal part of the relgious community of First Unitarian Church."

She picked up the rose and the water at this time and said, "Water is the stuff of life. Water connects all living things, all of humanity. This flower is dipped in water to symbolize your essential connection with all of us in our community." Kate dipped the rose into the water and then tenderly touched it upon Claire's forehead. This was followed by a prayer, most of which is included here:

"Spirit of Life, we give thanks for this beautiful child who has been born to us. Through all the challenges and joys to come, may this child be blessed the courage. And may Claire Elaine Zahm always know how much she is loved. Amen."

As a result of our discussions and all of the information that had been given to us, we agreed that there really was no other choice. To watch our sweet baby struggle any longer would simply be selfish and unkind. As parents, this was the most loving and important decision that we could make for her; the last way to show her that our love for her was limitless. We asked ourselves how we would rather die: Allowed to struggle until the last instant, or to be let go while in the arms of those we loved?

We informed Dr. Nicholson, who was on call that night, of our decision. We were so grateful that she was there. Later she told us that, because she had been there for Claire's beginning, it was appropriate that she be there for the end. She explained to us what would occur, starting with us being able to hold Claire for as long as we wanted to while she was still on the ventilator. We wrapped her up in the elephant blanket and took turns holding her at length. I sang to her and stroked her soft hair. We tried to pour every ounce of love into her as she lay in our arms. I remember her opening her eyes a tiny bit one last time. As the wee hours of the morning approached, I waited to feel that it was the right time. I wondered if this would ever be possible; if I could ever feel that the time was right to let my baby go. As I continued to look at Claire, though, she seemed to become more and more peaceful. She was warm and sleepy, resting comfortably in my arms.

Claire's nurse, the respiratory therapist, and Dr. Nicholson came into Claire's room. We played soft music as we prepared to let her go. Dr. Nicholson made sure that she would be comfortable and not have to experience any pain. Her respiratory therapist worked to remove the tape that held in her breathing tube and gently removed all of the adhesive that had held it in place. She cried with us as she lovingly carried out the most painful part of her job. The tube was removed and then the ventilator turned off. We were left alone to be with Claire as we released her. We told her that it was going to be okay and that we loved her again and again as the life left her body. After a time, Dr. Nicholson returned to listen for her heartbeat and it could still be heard. When she returned again, she listened for a long time until she told us that it was no longer present.

After we let Claire go, we held her tenderly and I rocked her for the first time. We instinctively rock our babies and it was such a relief to finally be able to hold her in my arms and sway her gently as I sang.

The nurses had said that we could take Claire outside as she had never before been able to leave the hospital. I carried her to the patio near the chapel and we stepped out into the cool morning air. The moon was just over the chapel and the stars were out. The first morning birds were chirping, though it was still dark. Fresh air finally blew across her sweet face.

*             *             *

On Saturday afternoon, we faced the emotional task of telling Julia that her sister had died. We were very honest with Julia, and after only a few sentences Julia began to cry almost uncontrollably. During the conversation that ensued, she asked us questions that were extremely difficult to answer, some of which we did not, and still do not, have the answers for. Her questions simply blew me away; ones that I would never expect a child of her age to ask. Why couldn't they fix her? Why did her lungs break? Did the machine break? Will they use the machine to help someone else? Are the doctors sad, too? Do her eyes open anymore? Why couldn't she get better? Is she going to come home? What we thought might be a brief conversation stretched on for more than an hour. I no longer buy into the idea that children as young as she are too young to understand.

*            *            *  

We included small items in Claire's cremation including a copy of "Guess How Much I Love You" and "Goodnight Moon"-  for all of the bedtime stories we wish we could read. We gave her letters written by me and her grandparents and a hymn from her great-grandmother. We made prints of some of our most precious pictures of her with us. Flowers from my mom's yard and our own accompanied her along with one of the roses from her child dedication ceremony. She would be dressed in what was to be her going home outfit.

*            *            *

When we picked up Claire's ashes, a finality consumed me. My empty arms ached. This is not the way that we had wanted to bring our sweet baby home.

*            *            *

Overwhelmingly, I am grateful for every precious moment that we had with Claire. In another place or another time, we would not have been given this gift. We never would have been able to know her inquisitive eyes or be delighted when she awoke at the sound of our voices. We would not have felt her grasp our fingers, see her yawn, or laugh out loud at the mere sight of her sucking on her pacifier.

Sweet, sweet baby. I would do it all over again to have you for just one day.

*            *            *

Although we do not have answers, we have acceptance. I am sure that some would be angry that science and medicine have been unable to tell us the cause of Claire's illness. From all that I know about the complexity of our DNA and the system that has evolved so that life can continue, it is clear that we cannot always have an explanation. Life is perfectly imperfect in its endless forms most beautiful.

"And though she be but little, She is Fierce."