Educating Patients in the NICU: Finding the “Why” in Laura’s Story
Educating Patients in the NICU: Finding the “Why” in Laura’s Story
Written by Rebecca Miller BA, LPN Content Writer at InJoy Health Education
In honor of Prematurity Awareness Month, InJoy is publishing 2 blogs. This is a personal story of one woman’s NICU experience, which we will follow with a blog providing tips for effective communication with families in crisis.
As nurses, we monitor each baby’s every breath and every move. It may be our 100th baby in our care, but for our parents, it's their first time here. As healers, we give so much of ourselves that it often leads to burnout, which can also make us a bit impatient.
One of the things that helps is reminding ourselves of why we do what we do. In honor of NICU Awareness Month, here is the story of Laura and her daughter, Aria, now 3. Through Laura’s experience, you will see how the way we educate and interact with patients has a huge, long-term impact on their experience.
An Unexpected Cesarean Birth
Laura found herself expecting. It was a happy surprise, but she'd worried about being a good mother, as all new expecting parents do. Her pregnancy was moving forward without complications until, at week 27, she was diagnosed with HELLP syndrome (a serious condition affecting the blood, liver and blood pressure).
One morning she woke up extremely nauseous. It prompted her to seek medical attention. Her doctor drew labs, and she was immediately sent to the hospital upon reading the results. Laura was informed that they would do what they could to control the HELLP, but she would be on bed rest at the hospital until she delivered. If they couldn’t manage the condition, Aria would be born that night.
Laura: When I got to the hospital, they gave me some medicine to help bring my blood levels back to normal, but they kept going the other way. One of the medications they gave me was an entire muscle relaxer, so I could not move or even get up. When my blood levels kept getting worse, even with the medicine, they brought the NICU nurse in to tell us all the chances and what we would be looking at for the near future.
Laura was terrified about what would happen to Aria until her NICU doctor and nurse spoke to her about her chances, potential outcomes, and how they would do everything they could to help Aria. Laura gave her consent and placed her faith in her team. Her last thought was going under sedation.
Laura: It wasn't long after this they took me to the Operating Room. I was not allowed to be conscious during this time. The last thing I remembered was them stating I was the patient in room nine.
Then I woke up in Post Op without my daughter.
The operation was a success. Upon awakening, Laura's first question was about Aria. She was born via cesarean. Aria's lungs were underdeveloped, and she was in the NICU and on a ventilator. Laura had consulted with her NICU doctor and nurse before her surgery. Still, fear and medicine made it difficult to retain the information.
Laura: I personally was not able to retain much of the information. I'm unsure if it was because of all the medicine, I was on, my brain being a bit cloudy, or the situation. All I could think of was that Aria was okay and that I would be able to see her soon.
Her NICU team explained they were helping Aria breathe. Laura felt reassured that Aria was doing as expected. This eased her mind, but she wanted to see her little girl.
Due to her surgery and her medications, she couldn't visit the NICU. Her mother, father, and Aria's father saw her and took pictures, but it wasn't the same. She trusted her NICU team, who told her to rest and that they were taking excellent care of Aria. It eased her mind. It would be 24 hours before she could lay eyes on her daughter. The hours slowly passed. Finally, she could go see her baby girl.
Laura: Once I did get to see her, it was an amazing experience. I watched the clock to the time the nurse said I could go. My favorite part is that my mom recorded me going in, so I had the first time meeting her on video.
Her tiny baby stayed on the ventilator for the first 48 hours and was later put on a CPAP. Laura spent a week in the hospital recovering from her surgery. After two weeks, she finally had the chance to hold Aria.
Laura: It was absolutely amazing. She was so tiny. I never imagined a child being able to be that small. When she opened her eyes for the first time, it was exciting, especially because her eyes were covered for the first week. It may have even been longer. Just seeing her look at me is something I will never forget.
Caring for Baby Aria in the NICU
Laura pumped her breastmilk to feed Aria through a feeding tube for the first 30 days. Breastfeeding proved challenging for Laura. Aria had trouble latching, and her heart and oxygen would drop dramatically during feeding.
Laura: It was tough getting her to latch to get enough, and tracking how much she ate was difficult, so we also had to bottle feed. The scariest moments were when her oxygen would drop, or her heart rate would drop and not come back up immediately. We always had to reposition her and rub her chest when this happened. I think my mom would get more emotional about this, so I kept her calm while holding myself together. The hardest thing to do was to stay calm.
Aria graduated from CPAP to oxygen but wasn't strong enough to go home. Laura stayed by her side until her NICU nurses reminded her that she needed to recover. That taking care of herself was the best way to take care of Aria. They encouraged her to go home at night and sleep.
Laura: I had to have faith in the doctors and nurses. I am a pretty positive person to start with, so I kept that optimism of everything being okay and that they knew what they were doing. I knew Aria would feel it if I was stressed, so I needed to stay as calm as possible.
I had questions all the time. I was always able to get them answered. This was also because I was always there for rounds, morning & night. If it was inside those times and our nurse did not know the answer, she would go to the doctors to find out for us.
Because of feeling heard and responded to, Laura had a sense that she had control. Her NICU team included her in every decision, had her provide routine care, and made her feel involved. As Aria grew stronger, Laura increased her care, doing them by herself and reporting her findings to her doctors.
Laura: When we were close to leaving the NICU, I could do the care by myself and report her care during the rounds to the doctors. It lets you understand what is happening compared to the goals she needs to be at.
Going Home
Soon, it was time to start planning for discharge. After having all the support in the NICU, Laura felt scared of being on her own and scared that Aria would never be able to leave. Laura felt prepared with help from her NICU team and her family. Still, the most significant challenge remained in front of her—will Aria be strong enough to go home?
Laura: It was challenging when I was getting excited to bring her home and then let down when something would happen to postpone that. She had to go 5 days without her heart rate dropping. We got to day 4, and then we woke up thinking we were taking her home to find out her heart dropped in the night. This happened a couple times.
It was a very exciting day when we finally got to the 5th day (I stayed the night before to know right away if it happened). We got verbal and written instructions, but honestly, I don't remember them!
After 66 long days, Aria could go home on oxygen and a pulse oximeter. Thankfully, aside from limited sleep and worry, Laura didn't have any setbacks. Instead, Laura and Aria thrived. Aria is now three years old, in gymnastics, dance class, doing pageants, and full of energy.
Reflections
Reflecting on Aria's NICU stay, Laura had some regrets.
Laura: I missed out on the first day of my daughter's life, which is something I won't ever get back. I'm happy that I never had to experience a contraction. I am also very sad that I missed the experience of hearing that first cry and holding her right away. I wish I had been more adamant about seeing her right away. There should have been a way to make this happen.
One of the things Laura had no regrets about was her NICU team.
Laura: Everyone was always trying to help and make things easier on the parents. I liked how we had the same nurses for day and night shifts with just a few weekly rotations. We were able to choose who we wanted as well. It helped to know you could trust the nurse and that your baby was in good hands.
Laura had this advice for the NICU nurse.
Laura: Understand these parents are sometimes trying to hide how they are feeling on the inside. Even though they are showing they are strong, they are struggling on the inside.
When Laura was deep in crisis, and medicated, she didn’t remember everything that was said to her, but what she did hear was her nurse reassuring her. Laura’s first thoughts were of Aria. Being separated was painful, but it was her nurse, again, who updated her and let her know that Aria was safe.
The NICU nurse answered a million questions and patiently repeated instructions, all while reminding, encouraging, teaching, and advocating for self-care. And even when Laura kept a brave front, she was comforting her. It was her nurse who made everything better.
Maya Angelou said it best: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
Laura and her primary NICU nurse remain friends to this day. Thank you, NICU staff, for being there.
InJoy offers NICU patient education materials to help you provide compassionate education, including video stories: Click here to learn more about the NICU education curriculum.
Rebecca Miller, BA, LPN, is a Content Writer at InJoy. She served as an after-hours hospice nurse from 2016-2022, working with adults and pediatric patients. Rebecca has written for several newspapers, magazines, and online publications. She is the author of Being Max’s Mom, The Whisper and is currently working on her new book, Dead People Stuff.