Read below as Jaelyn’s mom, a NICU nurse, shares her story.
My pregnancy was on the heels of a fetal demise at 26 weeks the prior year, so we were all (myself, my husband, our medical team) were all pensive and very cautious during my pregnancy. My blood pressure had been an issue and were we watching it very closely. Things had been going well until one afternoon, I felt decreased fetal movement, went in for an ultrasound and was told my baby wasn’t growing, wasn’t doing well and had to be delivered. We never got to tour the NICU, I had never seen a NICU (although I was a first semester nursing student) and my brief talk with Dr.Howell, one of the awesome neonatologists) was muffled by the hustle of busy nurses and techs as they prepared me for my emergency c-section. I was panicked but hopeful and blissfully unaware of the incredible, challenging and life-changing ride of emotion, joy and sorrow the NICU held for us!
The delivery was traumatic. Everyone was moving fast. Their urgency left me fearful, with lots of questions and tears. My husband was not very comfortable in hospitals. I felt as though he needed more nursing attention than I did! I remember the feeling of helplessness and surrender as I lay strapped on the OR table and even then, a piece of me mourned being able to hear my baby cry when she would be delivered. What a simple thing moms look forward to, and I was told my baby was too small/premature to do so.
Jaelyn Lorraine Blake was born at 28 weeks gestation on Veteran’s Day, Nov 11, 1998 -- all 1 lb and 12 ozs of her let out the biggest scream at 5:41 p.m., and I INSTANTLY, before I even had the chance to see her, knew I loved her more than I had loved anything I’d ever known before. She was small for gestational age but mighty in spirit. She’s only grown greater with time.
Hardest day in the NICU for me with Jaelyn was Christmas Eve. She had done well initially, but got an intestinal infection and then a bloodstream infection and was on the maximum support they could give her. Dr. Brady discussed how critical her condition was with me and explained to me that her lack of urine and days of low oxygen saturations may mean we need to discuss withdrawal of support if things don’t turn around. That day, I decided that God’s plan and love for us both was bigger than my ability or my strength. My entire heart laid my precious baby in God’s hands, that afternoon in the chapel downstairs that day. One of the hardest days of my life.
When Jaelyn came home (Feb 7, 1999), I was more excited and anxious than I had ever been! I was going to miss the nurses, whom had been my support and my guidance for 3 months. I longed for a home monitor, which she didn’t get or need, because I was OBSESSED with knowing her heart rate and oxygen sats at every moment and EVERYTHING had to be done “the way we did it in the NICU”. (Lol!!!) I later discovered there were other ways to do things!
My family was super understanding about the relentless hand washing and seclusion (Jaelyn wasn’t my in-laws first micro-preemie). I was still in nursing school, and my husband worked evenings. My dad pitched in so she wouldn’t be exposed to anyone or anything that would put her in harms way. He even joined us for the hospital CPR classes and visited daily to practice PO feeding with her. We were so grateful. She never even had a cold or fever until she was 4 years old and went to Pre-K!
I could not have made it thru the NICU days without some staple things. My family was super supportive! They made sure i would eat, they prayed with and for us and made themselves available 24/7 for my breakdowns and victories. MY PRIMARY nurses! Tammy Warren was my day time primary, but the best cheerleader, therapist and nurse to Jaelyn I could ever ask for! Couldn’t have made it without some amazing fellow NICU parents who would cry with me in the parking deck, complain with me about pumping and eat dinner together while we dreamed being “complete families” one day! And OF COURSE, the rest of the NICU staff who came in especially to do PIC lines for her, carried her around when she was so fussy fighting reflux and called me at home to have hard talks I knew i wanted to be a nurse, since I was a teenager.
I was in my first semester of nursing school when I delivered Jaelyn, taking prerequisites. I had never seen a NICU or really even knew they existed. I had dreams of becoming a nurse for a stroke/head injury rehabilitation facility, but after my experience, completely changes gears. I remember, as a NICU mom, being exhausted of questions, uncertainties and isolation. The NICU is a very specialized world. You absolutely can NOT understand the array of emotional challenges unless you’ve been there. I vowed that mine and Jaelyn’s journey would be used to help other people. My experience totally shaped my career, she was and still is my inspiration and motivation. I have shared her story for years in the NICU and it continues to bring hope and light to preemie moms in the very unit she was in for 3 months.
I have been a NICU nurse for 19 years, and I will ALWAYS be a NICU mom first. I feel what they feel. I know how it feels to leave a piece of yourself behind every day. That feeling will always guide my practice as a nurse. Just like the rest of healthcare, the NICU is a constantly evolving place. Evidence-based practice and research affords us the opportunity to continually learn with increasingly better outcomes and less long term complications for our precious babies. If I had to choose the biggest difference in the last 20 years, it would be Bubble CPAP. We didn’t have BCPAP when Jaelyn was a preemie, so there were many, many days on the ventilator. It has revolutionized preemie respiratory support and dramatically improved our long term outcomes for our micro-preemies with chronic respiratory disease.
Jaelyn, (although I’m a tad bias) is perfection. She wildly determined, highly self-motivated and stubborn like her mom! She hit every milestone head on, an avid reader and a fantastic cross country runner and competitive swimmer! She’s thoughtful and kind and turns out she’s one of the strongest young women I know! She has discovered her own passion for science and healthcare. She’s entering her senior year at UNC at Asheville as a biology major. She’s a mentor/ tutor for middle schoolers and high schoolers in Bumcombe county, she’s been an RA last two years and Head RA this fall. She’s worked since she was 15 years old, gotten scholarships every semester and this summer is becoming a certified EMT as a stepping stone to her applications to graduate school to become a Physician’s Assistant. She has made me proud every single second of her life, even when we were teething, potty-training and late to class trying to wing her eyeliner!
There is life, light and joy after the NICU, I promise! I’ve given advice many, many times over the years. The biggest one is allowing yourself, encouraging yourself or TEACHING yourself patience. Be patient with the process. There’s no timelines, manuals or crystal balls. Allow your baby to progress, to learn, to thrive without limits or expectation. Trust in the decades and decades of knowledge and love that the NICU staff provides, without clouding yourself with too much WebMD or Google. Be an advocate for your baby while remembering to keep yourself part of the team. Remember we are all working towards the same goal…HOME! AND…..be patient with yourself! Allow yourself to cry, allow yourself to visit at 2am, allow yourself NOT to visit! Be patient with your emotions, with your partner and with your family. Everyone processes this traumatic experience differently, allow others to feel what they do, and don’t be afraid to own your own feelings also. Try to find balance in the chaos and when it gets overwhelming, find the light. Even in the hardest moments in the NICU, I promise…..there’s always a light