In honor of November being National Prematurity Awareness Month and November 17th being World Prematurity Day, I’ve put together a few questions that many of my readers and fans have asked me over the years- questions in which the answers will help others know that they are not alone and will help them heal.
Today I’m thrilled to share s story. I first met Farrin last year at the Preemie Parent Alliance Summit and she introduced herself and shared that she was doing research on premature births and how preemie parents handle everything. I got to spend a great deal of time with her at this year’s Preemie Parent Alliance Summit and I really got to know her and now you will too.
Farrin Moreno is seeking a Master of Arts Degree in Communication at the University of Texas at San Antonio. As a former neonatal intensive care unit (NICU) parent her passion and goals are to work with NICU parents as they navigate through life after the NICU. She is currently working on a study that explores the challenges that parents of children born prematurely regularly experience throughout their child’s educational journey. The study examines the overall impact of the special education evaluation process in the public school system as it relates to the parents’ mental health. Her goal is to shed light on the ongoing needs of children born prematurely and how important it is for preemie parents to receive resources and continued support from the school in order to successfully advocate for their child beyond the NICU. Farrin’s other research interests include parental mental health, preemie health and nutrition, preemies and special education, and former preemies and developmental challenges into adulthood.
The nurses could have communicated a lot better. The nurses were often so focused on my baby, rightfully so, that I often felt invisible. They often used jargon that I did not understand but I was too fearful to ask them to clarify. I wish the nurses knew how much their verbal and nonverbal communication impacted my life well beyond the NICU and how the trauma received in the NICU does not go away. How you communicate matters. A friendly tone can bring so much comfort during such a traumatizing experience.
5. What are some of the best practices that you experienced in the NICU? What did the staff do that made you feel good?
Some best practices that I experienced in the NICU were seeing the nursing staff pay close attention to each baby in the NICU. I also enjoyed seeing the nurses hold some of the babies who were crying. It comforted me to know that when I had to leave the unit, my baby was always in such great hands. The neonatologist was always so warm when speaking to me.
6. What milestones meant the most to you while your baby was in the NICU?
One of the best milestones was when she was stable enough for me to hold her. Another milestone that meant a lot was when my daughter was finally off the ventilator. One of the biggest milestones was when my daughter was able to bottle feed! That was exciting because it was one step closer to the removal of her feeding tube.
7. How is your baby now and please give us an update?
My discharge experience was exciting but very stressful. The day I got the news that she was able to go home, the panic instantly set in! We were still a month out from her due date! They had told us this whole time not to even think about her coming home before her due date. We hadn’t prepared any nursery because of the uncertainty and rocky road of her NICU journey. I remember walking out of the NICU to call my family. Nobody was prepared for the news I had for them! Her dad and I spent that night at the hospital to “room in” as part of the conditions of discharge. It was the first time we saw our baby girl without all the wires attached!! No more oxygen flow through a nasal cannula, no more heart monitor to warn us of bradycardia. I didn’t sleep at all that night. We just stared at her and began taking care of her without any assistance.
9. What was life like 1 month after NICU discharge and 3 months after NICU discharge and when did you finally relax and feel like you were “out of the woods”?
One month after discharge was extremely stressful as she came home during RSV season. There were so many people who wanted to come to visit her but I had to limit the visitors in order to protect her from getting sick. 3 months after discharge was still filled with weekly doctors appointments. She had severe reflux issues and projectile vomited after each feeding. I was able to stay home with her which allowed us to develop a closer bond. As far as feeling like we are “out of the woods”, due to my daughters growth hormone difficieny and ongoing treatment, even 11 years post NICU, I still have days where I don’t feel like we are completely “out of the woods”. It seems like each year there is an additional health issue that arises due to her premature birth, so for me, leaning on my faith in God has really carried me through the years.
10.What advice do you have a for a parent who just delivered a premature baby that was admitted to the NICU?
I would suggest they keep a journal. Not only was keeping a journal therapeutic for me, but I have been able to read the entries to my daughter as she became old enough to understand. It has also been extremely interesting for me to look back at how I was feeling from day to day as the status of her health changed. I would also tell parents to never lose hope despite what the internet says. Lots of people may share unsolicited advice with intentions of being helpful, but I would encourage parents not take to take any negative comments to heart. Some people may not even realize how their words can be more hurtful than helpful so don’t be afraid to set boundaries. Try to enjoy each day even though most days in the NICU may seem unbearable.
November is National Prematurity Awareness Month and November 17th was World Prematurity Day.
Please visit my social media sites to see what I shared this month, because I shared a lot of personal stories and resources for families of premature and NICU babies. You are welcome to share them all.
Have a great weekend and please think about how you can spread prematurity awareness and help another family in honor of World Prematurity Day. I would love to her about what you are doing or did, or how you are showing off your purple! Comment below 🙂
And Happy Thanksgiving. We all have many things to be thankful for. I know I do.
It’s never too early to start thinking about how to spread more awareness for World Prematurity Day 2019.