Two days ago we received 2 cards in the mail. They come every year at this time. They are never late and there is always a personal note included.

My sons are 12 years old today. These cards, which have come every year for the past 11 years, are not from their grandparents or aunts or uncles. They are not from their friends or my friends. These cards are from one of the nurses who cared for them in the Neonatal Intensive Care Unit (NICU) after they were born prematurely.

So I write this to recognize the continued feelings of gratitude and awe that I have for one special nurse. How can I thank her for caring for my children when I wasn’t able? How can I thank her for showing my boys love and compassion when I couldn’t be there? How can I thank her for helping us through our most difficult days, weeks, and months?

My boys are grateful to receive these cards each year and to be remembered on their birthday; however I’m not sure they grasp how much the cards are appreciated by me and my husband. This day of celebration for our kids still brings mixed emotions to us, feelings which are understood by this special NICU nurse who reaches out to us each year.

As a nurse, I have not had a continued relationship with any patient after discharge, although I can think of several that I wish I had. How about you?

In my last post, I wrote about a challenging case where a patient’s sister, who was a nurse, tried to limit the amount of pain medication we were administering. Now I’d like to share my feelings about being a nurse turned patient/family member. 

Many of you who are members of NursingCenter or who follow this blog already know the story about when my sons were born. It was a surreal time in my life when they were born prematurely and spent several months in the Neonatal Intensive Care Unit (NICU). In minutes, I had switched roles from critical care nurse to new mother of two critically ill babies.  Before this, I had seen family members through illness and surgery and even sat by the bedside of my grandmother when she died in the unit where I worked. However, I think it was my time as a NICU parent that really exposed me to what it was like to be on the “other side.”

As anyone who has ever been there can tell you, it is scary! Sure my knowledge and clinical experience were helpful in understanding what was happening, but I remember quickly (even immediately) reaching the point of being completely overwhelmed. While I understood terminology and the pathophysiology, I was used to caring for adults - premature babies were a whole different world. “What about his tachycardia?” I would think. Then, the nurse, without even knowing my question would tell me, “He’s not tachycardic, a heart rate of 140 bpm is normal!” I guess she could just see the panic on my face!

It was very stressful for me to be aware of all the potential complications that could come upon my sons. Sure, I knew that dopamine was necessary to perfuse “Baby A’s” kidneys. I also knew that when the nurses increased the dose, that the goal had changed and now maintaining his blood pressure was necessary. I didn’t want to know the possible consequences if it extravasated or that his high ventilator settings could cause a pneumothorax. 

I know that my knowledge and experience helped me advocate for my sons, be involved with their physical care, and explain what was happening to the rest of our family. I am so grateful for the staff that, while they knew about my background, they also saw me as a new mother who was scared.  So what did I learn from this? Yes, patients and family members, whether they are health care professionals are not, are more informed and educated about their health care than ever. That is a good thing, but it is important to remember that we are all human beings first and in times of crisis, we all need compassionate care and a kind ear. 

Late last week a press-release came to my attention regarding the development of single family room NICUs. Wow! I read this information with great interest…on a professional level, as a women’s health care NP, and on a personal level, as a mom whose preemie twins spent 2 months in the NICU after their birth.

It is so easy for me to think back to those days of getting to know my new sons amongst the hustle and bustle of the NICU. Even though I had been a critical care nurse for years, nothing could have prepared me for what was to come. Sure, I’d managed airways and ventilators, titrated vasoactive medications, put in I.V.’s, been involved with bedside surgeries and codes, and dealt with families of critically ill patients…but my patients were adults -- many elderly and all very ill! We did occasionally get a younger patient who was otherwise healthy and had developed a severe pneumonia and ARDS, or meningitis, but these were rare occurrences.

Now I was looking at my babies who were simply born too soon. Not only was I looking at them (and all their attachments…ventilators, I.V. poles, monitors), I was seeing all the babies and their families. Privacy was provided only by a portable cloth screen. So at any given time, several new moms were singing, reading, learning to breastfeed, pumping, and providing kangaroo care to their infants.

“A growing trend in NICU design, SFR NICUs provide families with a comfortable and private place to bond with their babies and to discuss care plans with NICU staff. SFR NICUs also enable caregivers to tailor the environment to each infant’s individual needs in light, temperature and sound.”

Sounds great and I would have loved to have more privacy with my children. It was hard learning to be a new mother surrounded by technology and strangers. I understood the critical need for the equipment and the close proximity of the staff, especially during those first weeks after their birth and when complications arose. However, when my boys were stable and I had assumed most of their care, more privacy would have been most welcome!

From another angle, what about those families who cannot be at the bedside 24/7 with their babies? I was fortunate to be able to be with my sons every day, but there were many families who did not have that opportunity; for example, those with older children at home and those who needed to return to work. Would the presence of single-family NICU rooms trouble those parents who could not be present for extended periods of time? What’s really happening in the NICU setting? I am curious, as a nurse, and as a former NICU mom!

Interested in reading the full press release? Here’s the link: GE Healthcare Introduces Educational Web site Empowering Hospitals to Develop Single Family Room NICUs.