Nurses play a very special role in the NICU. They are the communicators, many times delivering messages in plainspeak and providing parents with emotional and practical support where doctors cannot. Sometimes, while in the state of having a baby hospitalized, it's hard to understand where a nurse may be coming from, and it can be challenging if there is a communication difficulty between parents and nurses. Building a trusting, open relationship with your baby's nursing team can be incredibly valuable both to your state of mind, as well as improving the continuum of care for your baby. Even when the relationship is challenging, it is helpful to remember that these individuals are heartfully dedicated to the care of premature and medically complex babies, and that they, too, cope with trauma on a daily basis.
Oftentimes, while a baby or babies are hospitalized, nurses become the primary contact with and support that NICU parents have day to day. Our relationship with the nurses can color our NICU experience; making us feel more supported and part of a team, or, sometimes, making us feel more isolated, fretful or dismpowered. Parents' relationships with their baby's nurses are invaluable during a NICU stay, so I reached out to one of Elliott's primary nurses, Cara Romanos, to ask her a few questions about her experience at the Lucille Packard Children's Hospital. Here are a few insights that may give us a sense of one nurse's values and beliefs.
What led you to become a NICU nurse?
I have always had a deep love for babies, children and their innate magic. I knew in my heart that I would in some capacity find my work with them. Before becoming a registered nurse, I worked with disabled children, many of whom required nursing care, and found myself drawn toward nursing. Once introduced to the NICU, and most specifically the fragile, heroic, and to my eyes, extraordinarily beautiful preemies, I fell in love.
How would you define your role as a NICU nurse?
I'm an RN who cares for premature babies, babies with birth defects, severe or life-threatening illnesses. I work under the direction of a doctor, or various doctors as I work in a university hospital. Aside from providing nursing care which includes many technological aspects, I also provide comfort and support to families.
What are the challenges in being a NICU nurse?
Working in intensive care is often challenging. Infants can go into distress quickly and as a NICU nurse I have to be constantly aware of and understand distress signs. I need to be very detail-oriented and be able to manage various technologies simultaneously. At the same time, I need to be kind, patient and emotionally objective while, my hope is, always remaining nurturing and deeply compassionate.
“A preemie’s parents are warriors; great warriors. They protect and advocate fiercely for their baby. Their love is so very apparent and unconditional; exceptional. They... have become my heroes and I feel honored to work for them and ‘fight’ at their side. ”
How would you describe your relationship as a nurse with NICU parents?
My hope is that it is nurturing and comforting on my part. I am also a teacher of sorts as I guide them through the sounds, tubes, wires and strange machines that surround their beautiful, fragile baby.
How do NICU nurses support parents while baby is in the hospital?
We can encourage them to touch and hold their baby (or babies, if they have more than one) as often as is appropriate or feasible. We can also encourage them to care for their baby as much as is appropriate as well, like participating in diaper changes and temperature taking.
We also encourage buying a device that can record their voices, so their baby may hear them talking, reading or singing to them when they are unable to be there.
How can parents advocate for their baby?
They may use their voice. If they are unhappy, they should approach the nurse/doctor or whomever directly to talk about their feelings. If they feel they've been ignored, they may talk with their social worker to set up a conference meeting with their medical team, or talk with the nurse manager about a particular nurse or nurses. Most NICUs are family centered and care deeply for the family as a whole.
“I encourage trust. Trust the nurse and the medical team more than what you read on the internet. The team has years of experience and education and your baby’s patho-physiology is more complicated to understand than what can be read by a few articles. Trying to let go as a parent must be very difficult, and most nurses do understand this. My hope is that most of your experiences are met with compassion. ”
What can parents do if they feel uncomfortable with a particular nurse's care?
They may approach the resource/charge nurse working that shift, or the nurse manager if available, and ask to not have that nurse assigned to their baby again. If staffing numbers/acuity allow for it, another nurse may be able to take over for their baby's care.
How can parents develop stronger relationships with their baby's nurses?
This is a difficult question. There are many different nurses with varying personalities and styles of nursing. There are nurses whom you will develop relationships with instantly, and others with whom it will take time.
I encourage trust. Trust the nurse and the medical team more than what you read on the internet. The team has years of experience and education and your baby's patho-physiology is more complicated to understand than what can be read by a few articles. Trying to let go as a parent must be very difficult, and most nurses do understand this. My hope is that most of your experiences are met with compassion.
What are some useful ways parents can take care of themselves while in the NICU that you've observed?
You can take care of yourself.
I know it's very difficult, but by trusting the NICU staff to allow yourself to leave the NICU and to rest. Sleep. Eat nurturing foods. Walk in the sunshine. Talk to each other. Allow yourselves to feel your feelings and don't judge each other if you are reacting to the NICU differently. The NICU is stressful, and if you nurture yourself, you will be more nurturing for your baby.
When parents feel especially overwhelmed by the NICU experience, what do you recommend they do? How can nurses be a resource?
As a nurse, I can call their social worker to the bedside. They are a wonderful and comforting resource and are able to sit down alone, away from the unit to listen and nurture. They are also able to connect them with a psychiatrist for sessions and if needed, medications to aid with depression and anxiety. The NICU experience is deeply traumatizing for families and many suffer from PTSD after their experience. It's very traumatic to witness one's baby having invasive medical procedures and life threatening moments.
When do you find it the toughest to be a NICU nurse?
When I bear witness to intense suffering. Both the babys' and the parents'. I work in a level III-IV intensive care NICU and we care for the tiniest and sickest babies. At times they can experience immense pain. They can often have various central lines, catheters in their chest, bladder, various tubes in their throats and noses, etc. They are fighting for their lives. I can't even imagine the pain the parents must be feeling to have their child in our NICU. When they are at their greatest moment of weakness or need, I know I need to stay strong and be a source of comfort and support.
What are some of the unique skills and gifts that parents bring to the table?
Their immense love of course, which leads to a tender touch and unique depth of connection. Their presence and voices calm and lower their baby's vital signs. I've seen this and love to point it out to their parents so that they are aware of the difference they make in this positive way. They are able to hold their baby bare skin to bare skin which again is soothing, calming and very beneficial to their development.
“I am in awe of the depth of strength preemies have. They are so very fragile and yet powerful in their will for life and ability to endure. They are courageous little ones and my greatest heroes. ”
Do you have any "sparkling moments" or stories that stand out to you in your experience of being a NICU nurse?
I've had many wonderful primary babies who have gifted my life and so have an abundance of "sparkling moments" held in my heart.
There is one little boy who was born at 29 weeks gestation weighing 2 lb., 11 oz. I was the RN on his transport team and we shared a helicopter ride back to my hospital. In our NICU he underwent various major intestinal surgeries, lost bowel, suffered from sepsis and hypovolemic shock. Three times his parents were told to expect him to not live. He spent seven months in the NICU. We both just celebrated our birthday, which we share. He is now a beautiful and completely healthy six year old. My sparkling miracle.
Do you ever feel traumatized by your work? How do you practice self care?
I wouldn't be human if I said I didn't feel at times overwhelmed and traumatized by this work that I love so deeply. As nurses, we care deeply for your baby. We become their biggest advocates and cheerleaders. We "will" them with our care and hope along with you. In doing so, we also feel deeply crushed during the "bad" days and grieve enormously with you if a life is lost.
As nurses, we share with each other and hold each other up. We speak with our church pastors/priests, exercise, cry and allow ourselves to grieve. Some of us even see a therapist when the grief is particularly overwhelming.
What are the biggest strengths of the preemies and their parents that you notice?
I am in awe of the depth of strength preemies have. They are so very fragile and yet powerful in their will for life and ability to endure. They are courageous little ones and my greatest heroes.
A preemie's parents are warriors; great warriors. They protect and advocate fiercely for their baby. Their love is so very apparent and unconditional; exceptional. They too have become my heroes and I feel honored to work for them and "fight" at their side.
Cara, Eli, and his doppelganger friend.
Cara Romanos has worked at Lucile Packard Children's Hospital Stanford for almost 17 years. She loves the magic and wonder that children bring into our beautiful world and she strives to keep it here. She is also mommy to Eli, the sweetest chihuahua she's ever encountered.