In St Cloud, we were automatically assigned a primary nursing team. Primary nurses are nurses who are assigned to take care of a particular baby each and every shift they work.
We knew from day one who Jax’s nurses were going to be. We met them all. They all talked with one another to come up with a game plan for Jax’s care. I was able to be a part of “report” during shift change. When the day nurse was giving the report to the night nurse, she would stop and ask me if there was anything I wanted to add. Jax’s primary nurses made us feel as if we were part of Jax’s care team and that we had an important perspective that added value to the team. They did not treat us (as parents) as a burden. Instead, we were treated as the second most important part of the team, aside from Jax, of course!
So, when Jax was transferred to Children’s Hospital in St Paul, we were nervous. We were worried about Jax and how he would handle the ambulance ride. We were nervous because we couldn’t ride with him. We were nervous because we had to meet him in a new hospital. But we were also nervous to meet our new care team. We knew we had an exceptional team in St Cloud and we were keeping our fingers crossed that the team in St Paul would be as inclusive and compassionate.
So…
I’m not going to lie. It took about 3 weeks for us to find a team at Children’s that we felt worked. (But once we did – we were so happy!)
For the first three weeks at Children’s, we had about 20 different nurses. We asked the ones we felt connected to “Will you please be our primary nurse?” Some didn’t know what primary nursing was. Others didn’t want to agree to be Jax’s primary nurse because “they didn’t want to become attached.” (Seriously.) Another didn’t “want to lose her skills by working on only one baby.”
I’m not judging these nurses – I understand why they would not want to sign up to only care for one baby.
But, in my opinion, primary nursing helps to alleviate many of the problems that can occur in the NICU. (Of course, I’m only speaking from my experience and in no way am I pretending that I have any medical training or background.)
Primary Nursing can:
- make a family feel more comfortable because they see familiar faces each day.
- help reduce error (a nurse who is familiar with a baby may be more apt to question a dose of medication that is higher than usual, for example.)
- help identify problems quicker. A nurse who is familiar with a baby will see signs of discomfort or “just not being himself” where a nurse who has not met the baby before would not notice these signs.
- give the family an advocate. Our primary nurses ended up being our biggest advocates – they helped connect us with services at the hospital, they acted as our liaison to the doctors, they found resources and information they knew we would appreciate. They became our biggest support.
I know that every hospital is different. We experienced that first hand. Jax’s two hospitals were completely different: one has 20 beds, 6 neonatalogists, and a staff of about 30 nurse practitioners and nurses. The other has 62 beds, 20 neonatologists, 85 neonatal nurse practitioners, and more than 500 nurses and support staff. One has open pods, the other has private rooms. One has a March of Dimes Family Support Specialist, the other does not.
But what made both of these hospitals feel like “home” were our primary nurses. And they made all the difference in the world!
In a couple of weeks, I am going to be part of a panel presentation for nurses who are pursuing primary nurse status at Children’s Hospital. The panel will help give the perspective of the family and focus on our experiences in the NICU. I’m excited to share our experiences and thank these nurses for becoming primaries!
I’m curious…did you have a primary nursing team during your baby’s NICU stay? What are some of the advantages or disadvantages that you saw to having a primary nursing team?
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An Early Start 
Wow, this was originally written awhile ago, but I wanted to share my own thoughts. We had a baby born at 27 weeks (1 lb. 14 oz) in 2012. We did have primary nurses, who we didn’t get to choose (I think they chose based on being available and connecting with certain babies/parents). I LOVED our primary nurses! I wish I could have taken them home with me! We had our primaries about a third to half of the time, and then had a smaller groups (maybe 10 different nurses) that staggered the rest of the time. Every once in awhile we would have a nurse that we usually didn’t have, and honestly, those were always the times that things didn’t go as well. I remember one nurse, who we saw around regularly, but who rarely took care of our baby, who when we had her refused to let me hold the baby that day (it was the wrong time of day apparently), even though we had been holding the baby every day at that time for weeks. I was furious, but at the time didn’t really know how to make my wishes known. There are so many things now, 4.5 years later, that I wish I had known then. We had a good, relatively uneventful experience and our child is great with no developmental delays, but I wish I could back and change some things that we and they did.
Thanks so much for this blog–you’ve written so many helpful posts! I especially love your posts on things to say to a NICU family (so true!) and about isolation, which I think few people understand.
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We had primary nursing that were assigned from day 1… there was no choosing it was just the nurse that was assigned to the empty bed on delivery day. We had a daytime and a nightime primary while in the intensive care room and then just a (different) daytime primary when V moved to the continuing care room. In theory we were also supposed to have a “care team” but in reality this was a bit inconsistent and there were weeks that we saw a different nurse for every shift outside of our primary shifts.
I was super scared and disappointed to leave our ICN primaries when we moved to continuing care but I later realized that after a period of transition it was beneficial to have our primary who was an expert in PO feeding, low flow weaning, and generally prepping for discharge. I think our hospital was a bit unique in this structure and I really grew to love it.
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Alyssa, I think it’s great that your transfer to continuing care turned out to be a good one. Different nurses definitely have different skill sets, so it’s great to have access to someone who fits your child’s needs. We stayed with our primary NICU nurses until discharge – no special care nursery of continuing care. I don’t know why that happened – there was a special care nursery! But we were just happy to be with the people we had grown to trust!
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We did not have primary nursing (@ a university/teaching hospital)! It was SO disappointing and disheartening. There were days when we begged nurses to take Jack the next day if they were working, but it didn’t always work out that way. The continuity in care was lacking, at a time when our 2lb baby was so fragile and needy. You are so right…primary nursing does all those things and alleviates many concerns and issues. I could go on and on. There was a 2 week period where Jack was taken care of by over 30 different nurses. I was losing my mind and was told that it was just the “phase” I was in during our NICU stay and not a realistic concern/issue. That being said, we still did have a great group of nurses who took care of Jack often and advocated for him and for us.
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Heather – I was also met with “Mom, you’re just overreacting!” when I voiced my concerns about the inconsistency of care. Um – NO! I think some nurses were defensive because when we asked questions, they automatically thought we were comparing them and their work to the care we received in ST. Cloud. Well…sometimes we were, but mostly we just wanted to know what was going on! I was so relieved when we found a primary care team that was willing to answer my (I’ll admit, sometimes over the top) questions!
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Oh how very important each and every single step is along the way of this journey! I worked for the March of Dimes and helped to set up many of the services in NICU so I know how very important and timely each person is. Another AHA moment documented so beautifully by you, Andrea. Thank you so much for all your writings. Love to all of you…………………
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Kathy – I knew you were involved with the Special Olympics, but I did not know that you also worked with the March of Dimes! That’s incredible! I’m sure we saw your work day in and day out. THANK YOU!
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