A father's responsibility

There is a point in life when you are called to make decisions you never wish to have to make. The last morning was my time.

I awoke after a short nap and was called to the NICU. Sara was not doing well. The morning exam had shown that Sara had several problems that did not bode well. I was told it was just a matter of time. Sara's o2 sats had dropped back into the 40s. He had a class 4 bleed in her brain (a major stroke), and she had a pulmonary embolism (her lungs were to fragle and were breaking down). My Sara was dying.

The nurses asked if I wanted to hold her, and of course I said yes. They moved her outof the isolette and placed her in my arms. She was so tiny and so warm. I was holding my little girl. My living little Girl. I was so proud.

The nurses were providing artificial respiration with a small ambu bag. There is a certain understanding that you know without speaking. Sara was fading fast being out of the isolette. She was still connected to the monitor and the numbers were falling. It was clear that she was going to die. I was faced with the choice that only I can fully appreciate. I knew in that moment my decision would mean the life of my daughter. I wanted her to live and that was not going to happen.

I asked to nurse to stop the breathing for her, and disconnect the monitor.

Sara died in my arms.

My first thought was "this is what it means to be a father" I had put the desires I had for those extra few minutes aside to allow my daughter to rest. I let her go.

Even today writing this, tears are surfacing. I miss her terribly. I wish I had not had to make the choice. The doctors and nurses tried to reassure me that she was so close to death that I did not ... In a way it made me angry. As horrible as it is to stop care, and let a loved one pass, I felt like I had none what a father would have done for his suffering child. That does not stop the what ifs. What if I had waited a minute or five or 30? I can't answer that. Sara was very ill. Her problems were multiplying quickly.

I held Sara close and talked softly to her. She never moved after the nurse stopped the ambu bag. I can't even be sure when she died. She was alive when I started to hold her, and she wasn't when I handed her back to the nurse. Time and the world, everything lost it's meaning in those moments. I died inside. The World Stopped.

Communication

Let me say that some of these blogs are out of order. I am writing what comes to the surfaces and letting more rise as it will. This event took place the night before Sara died.

The nurses and doctors told me that Sara needed to have a high oxygen saturation rate to survive. Her sats were in the 40s and 50s She needed to be in the 80s and 90s. I had this on my mind as I settled into the rocking chair beside Sara. I could look up and see the monitor. I am a realistic person, but this was my daughter. I had always heard that some one can hear you if you talk to them while they are unconscious. So sitting there, I started to talk to Sara. I told her about the need to improve her o2 sats. I told her what it was right at that moment, and asked her to work on increasing that number. To my surprise the figure changed. Maybe, just Maybe! I kept talking to her encouraging her and asking her to raise the value. One digit at a time the values grew and grew. I felt like a cheerleader. I did not care what it looked like, or who watched. Sara's o2 sats were improving. The whole night I sat there and talked to her, and kept at it. By the time the first shift arrived, her sats were at 69, just under the basic needed level. I was exhausted but hopeful. Maybe we had turned the corner.

There are those who have heard this account, and became naysayers. She was not old enough to even understand English or she could not have controlled her o2 sats. I know what I saw, and what I did. I can't explain it other than there is a bond between parent and child that transcends the physical world. A soul connection of it were. Sara and I worked together for a night. One precious 8 hours spent with my daughter. I will never forget that night.

Pain

There are days when it seems like a part of me is gone. I yearn for Sara. I want her safe and whole in my arms. There are not many words to explain this feeling. A deep abiding sadness combined with a joyful knowledge of her existence. This may sound irrational. I am joyful that she lived, if even for a few days. I am saddened by the things not done in life that we would have shared. Pain, a welcomed joyful pain.

I can't say when that started. I suspect it was after her death. The days spent in the NICU were hopeful days. Prayerful days. I would sit beside the isolette and watch her. I watch for every little movement. She laid so still. I would put my hand into the isolette and lay it right beside her little hand.

When I got to see her in the NICU in the warming bed, I laid my chandler ring (a class ring I had made for me with his name on it) beside her, and it dwarfed her.

It is odd, I was about to start the next sentence with "now, sitting beside the isolette" These events took place 9 years ago, and it is still a now.

Time has its way with you, the days are ever so long, and yet so brief. I sat for hours and talked to her, and prayed for her. Digesting inside those diagnoses, and what did each of them mean, and how could they be fixed.

My grandparents had a clock where every 15 minutes a little man would come out and move around. That was the image I got with the nursing and medical staff. They were there every 15 minutes checking on things. It was comforting. I knew the names then, I have forgotten them now. I felt part of a bigger team.

I am sure some of you are wondering about Sara's mother, and her experiences. I do not talk with her now, we are divorced. I am a person who does not share others feelings, thoughts, etc without their permission. So I have focused this blog on my recall, my thoughts. A father's perspective. I think it will not detract from Sara's story to have the single focus.

I can close my eyes now, and still see the isolette on my left hand. I would sit beside it, and turn my head to it. I know there were other babies in the NICU, but I was only focused on Sara. The others did not enter my thoughts. My world was inside a lexan box to my right.

Part of the lesson learned from Sara's life and death was the need to embrace the pain. I did not want to forget. I wanted every memory. With those memories comes pain. The pain of loss, of shattered dreams, of self blame, of remorse. I chose to welcome those pains because they were part of the process. I could not delude myself to think I could separate them from the good and positive things. Both positive and negative co-exist. To have one is to have the other.

NICU

After a bit of time, I was able to go to the NICU. It was a bit surreal. There was a collection of every conceivable piece of lifesaving equipment crammed into the space. The spaces were kind of like service bays. I was lead to Sara place in the big room. She was laying in an enclosed box with arm hole in the sides. The nurse began to explain the equipment. The clear box was to create a warm and humid space. The tubing was for the ventilator. The ventilator was a special one. It pulsed very quickly. Her chest really just vibrated, rather than the traditional up and down. This was because she was so small, and her lungs were not fully developed. She was surrounded by little stuffed animals. The staff lined the bassinet with small hand sized stuffed toys. The yellow duck is the one I recall the best. Sara's first and ultimately only toys. They showed me more about the room. They slid a rocking chair over to the bay where Sara lie, and encouraged me to sit. I settled in and started to adjust to being here. The nurse came back with another person who I recall was a physician assistant or a nurse practitioner. She began to explain about what Sara's condition was. Sara was very fragile. She had been born on the cusp of the survival. She had under developed lungs, and her other systems depended on the oxygen to continue to develop. The lungs were critical for Sara's survival. On a screen display at the end of the bed was the heartbeat, and the oxygen saturation reading.

I was comfortable with the technology. I worked in a hospital, and was very familiar with the meanings of these numbers. I was worried, scared, proud, and many other feelings. The technology helped me to anchor to a practical place where I could hold on. I just looked and looked at Sara. I think I was "seeing" her for the first time. I reviewed all of the parts of the bay and what did what. My world compressed to what was there. I did not think of work or anything outside of the room and the area around Sara. This is where I would exist for a long time. Even after we left this place, I existed here