Hand to Hold's Official Blog: Written by Parents for Parents

Dealing with NICU Staff

Part of me envies the NICU parents who can proudly proclaim that their NICU nurses were fantastic miracle workers sent from above who kept their tiny child alive. A NICU nurse who they keep in touch with, share pictures with, a nurse that remembers their child.

NICU staff, NICU nurse,

I didn’t have that experience when our son was in the NICU for three months. And you could say that part of me is a little bitter about that. Should we have had better relationships with our son’s nurses than we did? Was it us? Or was it just the fact that our son got a brand new NICU nurse almost every two days?

Our son never had one, two or even three consistent NICU nurses who cared for him during his entire stay. He’d have one nurse that we loved for two nights, and then we wouldn’t see her again for six weeks. This is the cycle that continued until he was released from NICU.

I felt, from what I had read and heard, that this was abnormal. I felt that most NICU babies (especially babies born before 30 weeks gestation) usually had just one, or at least a very small number of consistent nurses who exclusively cared for them. And I wanted that. Boy, did I want that.

The issue with having an array of NICU nurses who cycle through so quickly is that none of them got to know my son. They didn’t learn what made him tick, or what made him fussy or what was normal, or not normal behavior for him. And honestly, that made me feel very uneasy.

For example, my son was taken off oxygen support at 33 weeks gestation, and he was doing okay. One night his oxygen kept desatting, meaning his oxygen levels were decreasing. The nurse, who I had never seen before (and bless her heart was a float nurse from Peds) was told by the previous nurse that this was the first time he had desatted all day, so the float nurse just assumed it was his monitor malfunctioning. I tried to explain to her that it’s probably him actually desatting, and not his monitor. I went home that night, and came back the next morning to find that he desatted the entire night. When the daytime NICU nurse got back on shift, she had to put him back on oxygen support. This is just one example, albeit an extreme one, but one that shows the detriments of not having consistent nurses. Unfortunately there were too many incidents like this for us.

I had a sit-down conversation with the NICU manager about this during our stay. I was so tired of the nurses who came and went so fast that it seemed like they felt no real need or desire to actually get to know my son, and thus couldn’t take care of him as effectively as a consistent nursing team could have. The manager basically told me this was unrealistic, that it was not feasible have two or three nurses exclusively following around a single baby. (This hospital had a NICU and then a step-down NICU unit on another floor.)

I’m sure other NICU parents have experienced this. But it makes the NICU experience that much more unpleasant when every three days a brand new stranger is taking care of your child. Because of this, there were very few nurses my husband and I got to know or feel comfortable with. We voiced our dissatisfaction with our son’s care, quite a bit. So much so that the staff had put in our file “involved parents; complains a lot.”

I wished that we had a different experience. I’m sure the majority of my son’s nurses were very good NICU nurses. We just never had the time with any of them to find out.

I think I can speak for my husband when I say we felt very alone in our NICU experience. To say the very least, we learned to advocate for our son right out of the gate, and often. Because we had to. That was a good thing in a lot of respects, because that advocating has continued throughout our son’s life. And even though our son was hooked up to machines to be kept alive by nurses and doctors, it taught me that I will always know my son better than anyone else.

Karee Marsh About Karee Marsh

Karee Marsh (IL) had her first and only child at just 26 weeks gestation due to Incompetent Cervix. He was born 2lbs 7ozs and had a very uneventful albeit long 103-day NICU stay in 2013. In addition to being a stay-at-home mom, Karee helps run her family's honeybee supplier business (son in tow), keeps honeybees herself and has blogged since she was a teenager. Her passions include informing families and friends on how to best support NICU parents, as well as those dealing with Incompetent Cervix issues.

Comments

  1. Audrey Thomson says:

    I have to say I had a very similar experience
    The nurses were different everyday for 7 weeks with a 29 plus 4 weeker. I did get a few nurses a few times with maybe two days in a row but rarely. It made the whole experience very hard to deal with. You had to suss out a new nurse and their different ways everyday on top of everything else. It was cruel. Some nurses I would not want near another child of mine If i ever had one. Which after my experience I probably wouldnt. .

  2. Hi, Karee. Our first preemie (born at 26 weeks) had a primary nurse who worked at night, which was wonderful because she was there 3-4 nights a week when we weren’t. Several times, she advocated for a change in his care because she knew him so well. On the other hand, our daughter (born at 29 weeks) had a new nurse nearly every day, and many of them were floaters from the regular nursery. One didn’t even know how to operate my daughter’s isolette. All sorts of small things fell through the cracks because there was no continuity in her care. So, I definitely sympathize. I think the goal should be to have as much continuity as is possible.

  3. I can identify with this. My son was born at 23w2d (also due to IC though our stay was not uneventful). In the early days we would see more consistent care – a nurse that was on shift for 2-3 days would be with him, but over the course of 130+ days we had almost every nurse on staff (or so it felt). We had one with seniority who had pretty much claimed him and we appreciated that. Toward the end we definitely had nurses who we hadn’t seen before and we ended up with some that we didn’t care for. Luckily we had many great ones and they were really rooting for him. The hospital we were in has since implemented primary nursing and we are happy that current parents see more continuity of care.

  4. So glad that I have seen this and someone else is voicing their experience. I felt exactly the same!!

  5. Linda Merritt says:

    I can so identify with this as well. My son was born at 32 weeks and was only on CPAP for 24 hours. After that he was a feeder grower so the more experienced nurses were always assigned the sicker ones. As a former NICU nurse I understood the reason but it did not make it easier. He spent 42 days in the NICU because of feeding issues. I believe it was because of the many different styles nurses have feeding. Continuity of care is vital for every baby. Thank you for writing this because I too thought my experience was so rare

  6. As a previous NICU nurse, it is our preference to have primary nurses for our babies! I loved getting to know my little angels and their families. I’m sad that this does not and can not always happen! (But I can also assure all of you, I loved all my babies I cared for even if it were just one night-for that night, they were my child and were loved as such)

  7. I feel so badly that you all have had these experiences. I am a NICU nurse in Chicago. Believe it or not, I understand your frustrations. But please understand that there are dozens of, if not more, variables that affect nurse staffing. In our unit, we have over 170 nurses. There are those whom work 7am-7pm, 7pm-7am, 3pm-11pm, and any conceivable four hour shift in that twenty-four hour period. The census of the NICU can go up by ten babies in a twelve hour shift. We can have very critical babies that require one nurse or maybe even two nurses. Or we have one nurse that may be taking care of three babies. There are call-offs due to illness, injury, or family emergencies. Some of us work three twelves each week, some two twelves, some work once every two weeks, etc. Then there are vacations and maternity leaves. I could go on and on. The point is, as nurses, we don’t work twelve hour shifts, seven days a week. If that were the case, primary care for your child would be a breeze. But that isn’t the case. Our unit tries very hard to provide continuity of care, but it is virtually impossible. Our charge nurses do the best they can with what they have, in regards to assignments. Please understand that there is so much more involved that you realize. I do understand that your child is your priority, as he/she should be! I personally love being a primary nurse. I love the bond I form with the family and, as was mentioned, having the ability to pick up on anything out of the ordinary going on with your child. When I tell a doctor something is wrong, I like to have a history to base my observation on. It is incredibly frustrating for us as nurses, when we invest our hearts and souls into the care of your child and then we don’t take care of them again for maybe weeks at a time. As I said, I feel horrible about your experiences. It makes me want to cry. But please try to understand that it is nothing personal. We have tried many ways to make these situations better, but unfortunately there is no perfect answer.

  8. My 23+6 weeker was born in a small tight knit NICU @ st johns hospital in Tulsa. There we did have only a handful of nurses who became like family to us. I felt like each and every one was consistant in her care and very very very thorough in informing us as parents. Our neontologist received her from birth then cared for her for over 3 months. The surgeon did all 3 of her surgeries and continued to check on her weekly. RT, OT and speech therapist were amazing with her. It was truly the perfect team! Then she developed hydrocephalus…. And we were transfered to a large children’s hospital @ ou medical center in okc. There I felt like a number. And yes the nurses daily AND doctors rotated out weekly. There was no consistency. My heart broke as I continued to complain and be her advocate. We finally made it to the unit where I could be bedside 24/7 to do all cares myself. Here we are finally starting to find consistency BC I can dictate every move. Sad to say but my experience in the larger NICU truly shattered my heart for every baby who couldn’t help they were there.

  9. I’m so sorry this happened to you.

    Family centered, holistic care and continunity of care is normal an area NICU excels at and it’s something we can be quite proud of. It sounds like you were either on an extremely big unit, or perhaps the staff turnover was very high. I’m not sure if it’s the norm for units to assign a team of nurses to one patient unless they had very particular care needs, but there should always been a continuity of staff in your area and looking after your baby. i.e. There should be recognisable faces and nurses who know how your baby normally reacts to changes in their care. Perhaps not ALL the time, but I’d say defiantly for most.

    I am so sorry again.

  10. Well our little boy was in icu for 5 months they discharged us unsafely then one week later we went to high care dependancy unit for neonatal team to say he’s been discharged from us when I asked the drs to talk to the neonatal team about my little boys help he was scared for life when his lip was torn and scared by them replacing his ventilation tube wrong and nurses wer a joke hated neonatal ward !!!

  11. I am also a Neonatal nurse and from my perspective (and I’d like to believe I speak for at least most, if not all, of my colleagues), I would absolutely LOVE to primary care nursing. Not only is it great from a nurses perspective, both to know the infant and his/her specific needs and knowing when there’s a change towards the better or worse, to be able to see the changes from day to day and the whole picture. Also, knowing the parents, where they’re coming from and how to communicate with them best and understanding their needs. I am sure the parents perspective is much the same in that they would like to know the person who takes care of their infant and have a relationship with him/her. It is unfortunate that this is not possible due to many different circumstances, especially in smaller unit such as the one that I work with. What comes in to play are nurses who work full time vs. part time, varying shifts and vacations, classes etc. I do know that every effort is made to provide consistent care, even though it may not feel like it to the parents on the receiving end.

  12. We were really lucky. My 24 weeker, now 3yo, had 2 primary 1 day/1 night that we keep in touch with. They are like family now. Beyond this, the remainder of nurses were regulars who cycled through us regularly. There were only 1 or 2 that we only had once. However, I was there. Everyday. All day. Amd all night. Until it was time for me to sleep. I would arrange meetings and activities according to my primaries schedules, then God blessed us with 2 addituonal nurses who were like surrogate primaries since you could only have 1 per shift. My son had 3 nurses sign up to be his primary on 1 shift. We were very blessed. I remember getting subpar nurses. And like you, I got 1 the day after my son came off O2. I requested to Never have her again. In spite of my great nurses, I had some horrible ones, lazy, absentee, and 1 that took freaking smoke breaks…i couldnt believe this. Im closing, I will say , leave the NICU stay where it is…in the past. Be too busy enjoying that little one to even remember the nurses.

  13. Mandy Hawke says:

    I didn’t like my experience either. every two days a different nurse. then they wouldn’t tell me anything as is I was alone my son’s dad got scared and left us. I would go down to the cafeteria and overhear the nurses talking about the babies and that’s where I learn about my son’s brain bleed and chronic lung disease etc. would say stuff and they say I need a mini vacation. or the doctor said I could finally breast feed and I had a nurse not let me so I dried up and she fed him by tube. she was, unfortunately, the longest nurse I had. I was so upset that I had to as to hold my baby and told I wasn’t allowed to hold or fed him I would say something and I was told I was too emotional. I had my son at 25 weeks his dad walked out I was alone and the nurse was saying I couldn’t feed or hold I felt like a glorified babysitter. not being able to do anything.

    • Leigh Ann TorresLeigh Ann Torres says:

      I’m so sorry you had that experience, Mandy. It’s so emotional and stressful, and moms need support. How old is your son today?

  14. 2FrustratedMom says:

    We’re very frustrated too! Our baby has several complications and challenges and having to deal with new nurses, especially those who don’t really seem to care about him much, makes it so much harder. We keep finding ourselves having to step in and bring up things that they would know about him if it weren’t the first time with him. It seems like we keep getting new nurses every day or every other day. It is frustrating and aggravating when they completely disregard any of our suggestions, though we have been with him since the beginning and know so much more about him. And this means more discomfort and suffering for him because they choose to do things their way first, only to come around and do things our suggested way, after having put him through the hoops for no reason. Or don’t proactively do things that would help his progress, such as weaning his oxygen down when he’s been sating at 99-100 for more than 2 hours, clearly he doesn’t need the high O2 that you’re giving him…. Trying to give him ROP, are ya? 🙁
    I CANNOT wait for the day when I can take my baby home, these almost 3 months have already felt like a million years and sadly not even sure how much longer it’s going to be. Any suggestions to help make this situation better?

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