Compassionate Support, for your patients and yourself.

I have taken classes recently, about palliative care practice, read the books, the articles. Watched fellow "senior RN's" all in the hopes of finding a way to grasp the method of withdrawl of support.

I have learned, I guess....the "hard way". As I have grown in this practice, I am becoming known as the "palliative care" nurse by default.

Last year, I had my first loss. A 35 weeker corrected, had been in the NI for about 3 weeks. The shift before mine had put her on low wall suction due to gastric residuals and the beginning of what we all know and hate...NEC. Long, painful story later....she passed away after a good 45 minutes of great efforts to save her...with the parents in the room...on the floor screaming and crying.

That day. I wanted to quit the NICU.

I ended up in a palliative care class about 6 months later, crying the whole time, and found that I may be suffering from some sort of post traumatic stress. It became blatently clear, even more so that I had a problem a week or so after the class. Running the high risk clinic that week, in came "Diana's" mother. "Dear God, maybe she doesnt recognize me" I thought, selfishly. She looked in my eyes, half way between the developmental assessment of her older child, and said "Christine, I know you tried to save her." I started balling, I had to stop and get another nurse because I was just so distraught. 35 weekers are not supposed to die....especially under my hands.

Feeling completely un-proffessional, and heartbroken...I realized that day that I had to do one of two things. Quit, or cope.

So, I chose to cope. I had worked long and hard to become a confident, competent NICU RN, transport nurse, head of parent support, one of the team leaders for high risk....I kept going and going, without really stopping to take care of Christine. I had realized how far I had come, in only a year and a half out of nursing school...however, realized just how far I had come everywhere else but within myself.

I started by forgiving me. I did what I was trained to do, and it didnt work. In the beginning I prayed, and I cried, just trying to figure it all out. I went back and forth with de-briefing counselors, on whether or not I should take care of the really sick ones....but I knew, that if this was the choice, than I would surely have to leave the NICU. I forgave myself for being so hard on me, for being what I considered "selfish".

Once I got this together, I knew the best way to go from here on was to become not only skilled, but emotionally stable too. The way I did this, was by giving parents peace, and calm in the storm.

I now find myself sitting on the parents side when the M.D. gives the aweful news of the head ultrasound, offering them a hand, tissue, and comfort. And when it is decided, I give them all the time they need. I explain everything I am doing, and why. I recently went to the head of neonatology and demanded a morphine drip for continuous sedation during extubation procedures, I encourage skin to skin while the baby is alive, and dressing their tiny ones, bathing them etc.....

Yesterday, 650 gram "Amanda", went to heaven on the chest of her mother. Skin to skin with nothing more than the morphine drip line, a darkened room with a single light on in the corner. The monitors were muted, and I threw a blanket over the red alarm on the top...turning the monitor towards me...the last thing I wanted them to see was the blaring heart rate of 30 and sats of 25.... Before I withdrew the ETT, I shared with the mother how I felt that this was the way any baby should go to heaven...surrounded in the love of her family, held by her mother, her father and in such a way, her face was so relaxed in calm peace and comfort, and how her heart rate had never looked so good...and before removing the ET, cleaned her face gently with baby oil to remove that sticky tape, and asked parents once more if they were ready....wiped the tears from her mothers face, placed my hand on her fathers hand and slowly withdrew the tube....allowing even, this nurse to drop a few tears too. The rest of the family in the background of the room, in silent calm. I realized yesterday, that I had arrived in this place of peace...one that I had been longing for, for such a long time.

It was 5 pm. I never left the family except for the last hour, after baby was wrapped and family was holding, giving the parents quiet, and told them I would be right outside the glass doors if they needed me. The grandmother of the baby, mother of the mother, brought me a water and said to me, holding my hand "you must have been doing this for a long time, you are such a blessing to your profession, to our family, to my daughter, to my first grand-daughter, to the patients that you serve."

"A long time"

Is this not one of the greatest compliments one can recieve from a patient or their family?

I decided to take a few hours PTO time once I had finished up my charting, I rode my bike home, and I thought about my day. I was saddened for this new mother, I thought about how hard she worked to pump the 6 mls of breast milk that I forgot to take out of the breast milk freezer before I went home. I thought about how she came into the hospital, with hope that we would have the expertise and knowledge to save her 25.3 weeker, how she hung upside down for 4 days trying to keep a fully dilated cervix from having any pressure on it, how the father and her had just gotten married.....

I used to tell myself, "its not about you." I excused my placement in the situation of a parent losing their child. I was just the nurse afterall, and most of the nurses I have seen, would not have done the photos, the memory box, the skin to skin...as a matter of fact, babies have been taken off the vent lying in their beds...and to me, none of that made sense...I had grown and found a way for not only the family to go in peace, but to let myself also be in peace...which I now know is so important. Fellow nurses, we are not the center of loss....the babies are not our own children....however we are a part of the process, and once we realize this.....things can change dramatically for not only ourselves but our patients as well. When we see what we do, as giving a gift....then we know that we have come to a very, treasured place in our careers.

I continue to grow each time I experience grief and loss in the NICU. I have found that loss does not always include the death of a baby. I see now, that loss starts the second a baby enters the unit...be it a full term baby for 3 days of antibiotics, or a 25 weeker with a grade 4 bilat hemorrhage.....a loss of the "dream" delivery, the television perfection of birthing balls and swimming newborns, was not given to them....there will be grief and sadness...it is how we, as their nurses handle these emotions, that will make all the difference in their hospital stay.

I hope in some way that my own loss, of the perfect "Real nursing in the NICU" where all the babies live, smile and parents smiling in joy with the hopes of spending the next 4 months traveling 3 times a day with pumped breast milk, half the time missing a feeding because we had to chose which baby to change on the half hour...I hope that this loss has helped you in some way too. Please remember that grief is a profound human experience and grief and loss is not always pulling the ETT.....it is much, much more than that, and yes.....you are part of the circle too.

I look forward to reading your stories and learning from you, how you have handled compassionate support withdrawl, and your ideas on how to make this tough situation, easier for the famalies and the staff.

I pray that you are able to find peace in giving of your compassion...every time you give of you, truly you are giving back to yourself.