Compassion support withdrawl

[kangarooyou]

Hi everyone....

I am posting to share something with you all, in hopes that you could learn from my growth and in my hope, that I can learn from you as well.

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.

Blessings,

Christine,RN:heartbeat

[Nikki.J]

Dear Christine,

What an insightful window into your moving experiences with loss as a NICU nurse. I have just wrapped up my summer externship in the NICU just yesterday and am hoping next May that they'll have me back on the unit full time. It was... amazing. I loved every minute... except the day when they brought in a little boy, 32 weeks I think, who had only a brain stem and was not expected to live. Our NICU unit is one large 50 bed room (being moved into the Children's hospital-private rooms- in the Fall...) and to see them wheel his mom in right smack in the middle of the room to her baby for everyone and God to gawk at was so hard to see, no matter how much I averted my eyes. She was falling apart, with very good reason... in front of everyone. As just an extern, I could not even believe they couldn't have given her and her family some privacy in one of our over-flow rooms. Something, anything would have been better! Not only did the goings on of her meeting her baby for the first time disturb me, but also that this was my first experience with impending loss unfolding before my eyes. Other nurses just feet away acted as if nothing was happening, sitting and chatting about their days with their co-workers. I know the world couldn't stop because of this, but I just wanted to shout "show some respect!" For God's sake, she was about to lose her child!

I am so inspired by your post. Death is so personal... it should be given the utmost respect and I admire your fervor to give this cherished moment to the parents going through such heart wrenching loss with as much dignity as possible.

Thank you for your post... and thank God for nurses like yourself. You give me a lot to look up to!

~Nichole

future BSN nursing student

[krltdy]

As a mother of a former 484gram 24 weeker,I am sitting here balling! I remember well having to make the decision whether or not to continue life support. Thankfully, we chose to press on, and I have a perfectly healthy 2 yo little girl.

I delivered via emergency c-section, due to preclampsia and abruption, a little girl at 11:15am, and was so distraut she might not live, my WONDERFUL nurse decided to wheel me up (in my bed) to see her. I suppose when I told them to "please don't let me remember a dead baby, I want to remember her while she is still pink" it just broke her heart. So there I was in the middle of the nicu in my hospital bed, on morphine. I don't remember being aware of anyone else but my husband, and this tiny, perfect little angel. I could've cared less about privacy. I was just very relieved I was able to see her before anything happened to her. I was in such a dark place, I just knew she would die. Thank God I was wrong!

When I was finally off the morphine, and Mag, I remember sitting in the nicu with my little one, thinking everyone (other nurses, not my dd's nurse) is going about their business, meanwhile I have this tiny little baby on an oscillator, looking so very frail. How can they be so casual about this? How can they walk right by me and my dd, chewing their gum, and not even acknowlegde what's happening? I understand now, but then I just couldn't wrap my head around it.

You sound like such a compassionate nurse, thank God you're in the Nicu!

[AliRae]

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

I worked PICU back when I was practicing in the States, and I also seemed to have fallen into that role by the time I left. My first loss was, thankfully, nothing like yours, and I think that's what allowed me to go on and do it so many times after that. He was ten years old, and had been neurologically devastated since about a year of age. They had withdrawn support the night before, and I was surprised that he was still there to be assigned to me in the morning. I walked into the room, and his mama looked up at me from her place in the chair. "You're here. He was waiting for you." As soon as she had said that, his heart rate dropped and he died. Just like that.

There was one other death that I was a part of that I will absolutely never forget. She was 16, her nails were perfectly manicured, and her mother, through her sobs, explained that she had just had them done the night of the party. The party where the brain cancer we all though she had beaten reared its ugly head, and she started to seize in front of all her friends.

I sat with her parents and her two little brothers all day. At her mama's request, I stood in the circle of family while the priest who baptized her prayed over her. When her mother pulled me out of the room and begged me to explain to the boys what was going to happen to their sister, I agreed to talk to them. "You've done that before, right? You know what to say?" I lied and told her I had, that I did, and then I went back into the room and somehow managed to tell them that sister wasn't going to come home this time.

When we pulled the tube, the doctors and RT's left quickly, and I stayed by her bedside, next to the darkened monitor, holding her mother's hand. Her father laid his head on her chest, and stayed there, motionless for what seemed like forever. Finally he lifted his head, panic in his eyes. "I can't hear anything."

I took my stethoscope and confirmed what I knew had probably happened long before. "She's gone."

When the parents left the room, a tech and I bathed her, washed and combed her hair, scrubbed the sticky residue of the pulse-ox off her perfect nails. We took out lines and clothed her in a clean gown. Even though she was 16, I made hand and footprints, one each in her favourite colours: pink and purple. When we were finished, I found her parents in the waiting room. Her mama was curled in a tight ball, refusing to come see her baby, because she didn't want to see her "like that" anymore. I explained that the tubes were gone. The wires were gone. The machines were gone. She just looked like she was sleeping.

We went back together, and then I left them all there to say good-bye. On their way out the door, the mother grabbed my arm. "You won't let her be alone, will you? You'll stay with her?" It was already after seven, but I promised. I clocked out, paged transport and sat by her bedside. When they came, I walked with her down to the morgue and made sure she was 'tucked in' before I left.

I've helped to midwife many souls from their bodies since then, but that day stays with me.

[KaroSnowQueen, RN]

OP, thanks for your story and the beautiful way you handled that second baby and the parents. I watched my first grandbaby die, and wonderful compassionate nurses make all the difference in those circumstances.

[TheMiss]

Thank you so much for your post.

Thank you for sharingyour experience and gining the oportunity to reflect on our own handling of such situation.

I was wondering if anyone has a protocol in place for withdrawing therapy ?

The unit I just started at 6 month ago does not - and I deeply miss one.

As I type we are extubating the little 25 weeker with IVH 4 bilat.

When I left him yesterday evening I was still fighting for not having to recommence phototherapy, not having a newlygrad assigned to him the following day ( our NUM thought he´s such a stable vent ) not having to do CAB Gases at 8 a.m. when the priest is sceduled for 11 a.m. and have the docs at least think about a morphine infusion for today.

A protocol or at least guidelines could have provided me with a much better position to argue. A unit where death is not uncommon might benefit quite a lot from it - for the sake of our patients but also for us nurses.

Do you agree or dislike the idea?

And if you have guidelines, are they implemented and helpfull or being ignored?

Thank you for your feedback

[preemieRNkate, RN]

AliRae, your story literally gave me goosebumps.

[radmom]

A number of years ago, I gave birth to a little boy with Trisomy 18. We had known throughout the pregnancy of his condition, so his death was no surprise, yet nontheless heartbreaking.

I cannot emphasize enough how the compassion of the nurses who attended to my son and I helped turn a nightmare into a cherished memory where I was able to give my son all the love I felt for him in his brief two hours on this earth.

They put us in a recovery room and allowed family to come and meet our baby and gave us the time and privacy that we needed.

My mother traditionally makes christening gowns for each of her grandchildren. She had made one for our son, and the nurses dressed him in his gown for us while our priest baptised him. They marveled at his beauty, they supported my older son and made sure he was ok.

When it was clear that he was going, the nurses gently asked family to leave and left my husband and I with our boy to say our goodbyes. One nurse stayed with us, and stayed with my son as they took me from the room. Her hand was gently on his back.

Life was going on outside that recovery room, and as they wheeled me out, I could hear the familiar shouts of PUSH! and the sound of a newborn's first cry. I focused on the image of my son in his bassinet with his nurse.

When I went to my room, each nurse came in an expressed their condolences as did each of the nurses (and doctors!) from the NICU. Athough he never made it to the NICU, they all knew of him and presented me with a lock of his hair, his footprints and a card they had done in calligraphy with his name and birthdate, weight and length.

Don't be afraid of the parents grief! and don't be afraid of your own grief. I so appreciated the tears of those who cared for us. It meant that my son meant something to them.

Another thing that most people wouldn't know about. There is an organzation called Now I Lay Me Down to Sleep that has volunteer photographers from all around the country that will come in and photograph the child and the family, giving them some precious photos of their baby. I believe there is no cost, or at least minimal - but the photos are amazing.

[traumaRUs, MSN, APRN]

What a powerful story and the reason so many of us are still nurses. Thank you so much for supporting this precious child and family.

As an experienced ER nurse, I've unfortunately had a lot of death. I will always remember one phone call that I received one morning from a lady. She called to thank me for providing a rocking chair and a warm receiving blanket in which to wrap her 6 week old son in who had died from crib death. This incident occurred a few days before she called on an absolutely crazy night and I felt bad that the only thing I could offer was a rocking chair in the trauma room after it had been cleaned. The reason w do what we do is because its because its the right thing to do.