Ebony J. Ford
If you're looking at this blog, you're likely a new NICU parent, have a child who has already graduated and can completely relate or maybe you're just curious about what happens in the NICU. After reading this blog, I hope that you perspective on the NICU has been enlightened and that you'll walk away with a greater appreciation for the stressful, demanding, draining yet MIRACULOUS journey that 1 in 10 parents endure for any amount of time.
Before going into my c-section, NICU doctors talked me through every statistic. And although I was too overwhelmed to take it all in, I knew that many odds were against her. Knowing that made me honestly dread stepping foot into the NICU. I had preconceived notions of what a NICU looked like—a pediatric version of the ICU that I just left. And that to me just seemed like a very hopeless and gloomy place. But as I was wheeled in to see my baby for the very first time, I realized that it wasn’t gloomy at all. Our NICU was open concept and could house about 30 babies. And although the lights were fairly dim (due to it being nearly midnight), it still seemed bright. I was expecting a bunch of tiny babies on ventilators, crying parents and somber nurses. But as soon as I walked in, I saw nurses holding what looked like full-term babies. I figured that they must've been there for a while and were headed home soon. But I later found out that many full-term babies come to the NICU for cardiac, respiratory and digestive reasons (just to name a few). I also saw several smiling and laughing nurses, one of which came to introduce herself as my daughter's caregiver for the evening. As I looked around the room, I saw lots of personalized items near each baby and other items that made it feel like HOME. And that brought me so much comfort as I began to realize that it would soon become not just Reign’s home for a few months, but mine as well. The first lesson I learned from the NICU is that assumptions are counterproductive to hope. Its best to simply take the facts in face each moment as it comes.
And speaking of facts, I had all of those medical facts about micropreemies in my mind as I was wheeled over to meet her. But when I laid eyes on her, none of that
added up to me. Sure I saw the feeding tubes, the oxygen and the umbilical lines that they said I would, but I didn’t see a frail baby clinging to life as they prepared me for. I saw a FIGHTER!! Sure she was tiny, but she was FIESTY. As I stroked her hair, she jumped but when I stopped touching her foot, she stretched it in my direction as if to tell me to continue. At just a day old she was already very clear on what she liked (or didn’t) and her nurse’s stories later confirmed it. She didn’t like to be confined in the cocoons that simulate the space in the womb and would kick her way out of it every time they placed her back in it. And to me, it made perfect sense as many days I watched tiny arms and feet protrude out of my belly. Seeing her feisty demeanor was a lesson to me on facts vs truth. I learned that the facts can be verified (i.e. statistics about 26 weekers) but they can also be proven FALSE, and they certainly were in our reality. Facts said Reign should be frail but THE TRUTH said that she was stronger than even I knew!!
And in seeing how strong she was, I could tell that certain things that were policy in the NICU might not work for her. She had her own way of showing when she wasn’t comfortable but I also developed the mother's intuition that I had heard so much about. It showed me just how capable I was of speaking up for her and a new found confidence set in. The NICU taught me how to not only trust my gut but how to advocate for Reign. Although I always respected the opinions of her highly educated doctors, I always prayed about all of the decisions that need to be made and trusted my gut to speak for her. After all, who would if I (or my husband) didn’t? This was a lesson that I am grateful to have mastered early on as I would certainly come to need it in later days.
When you have a baby in the NICU it can seem as if time stops. But I quickly learned that the world kept turning. I still had to be a wife, daughter, friend and more. I struggled for the first couple of weeks to get my bearings and juggle my new schedule which consisted of pumping every 2-3 hours, visiting the NICU and everything else I was doing before Reign’s birth. One day, I sat down and wrote out all that I had to do that day and I noticed that I had a lot more peace and felt less rushed. I kept it up for a week and then a week turned into a month. I believe it was less about the writing and more the mental scheduling needed to maintain peace and adjust to my new life. The NICU taught me to pace myself and be honest about what I can and can’t do within a day. It eliminates frustration and feeling overwhelming by all that you must accomplish within any period of time.
Our time in the NICU, though shorter than most 26 weekers, seemed EXTREMELY long at the time. Security came to know me by name as did I all of the administration staff and nurses. I prided myself on having most nurses faces, names and shifts memorized even if they didn’t regularly care for my baby. There were many days when I came in exhausted, discouraged and flat out depressed. But a nurse would crack a joke, tell me something sassy or funny Reign did before I came and it would force a smile on my face. It helped clear my mind and reassure me that all was well. Through my experience in the NICU I learned that nurses are more than just caregivers, they are truly angels sent to aid God’s miracles. And in my case, they became like family that are still connected until this day. Sometimes, they get the brunt of our frustration after leaving their families to take care of our babies, being vomited and pooped on all day and often being bossed around by doctors. They deserve our utmost respect and appreciation for the selflessness they display every single day.
As the time went on, I began to see more babies leave the NICU that arrived after we did. Some days I could celebrate and congratulate the parents. But other days, especially when she had setbacks, it was extremely discouraging. Although some of the babies graduating from the NICU came after us I didn’t always realize that they were weeks ahead in gestation therefore their process would be far different. I knew so little about the NICU and prematurity when our journey began that it was easy to compare journeys without the facts. One of the most important lessons that I learned while in the NICU was to not compare journeys. There’s an adage that says “All that glitters isn’t gold” and in the NICU it remains true. The worst thing you could do is compare your baby’s progress to another's. Everyone has their own journey and comparing them will only rob you of precious time, energy and most importantly your focus.
And when our day came to leave the NICU, I began to feel an emotion that I was
unprepared for: DREAD. I desperately wanted my baby to come home to me and I was so excited that she was. But I quickly realized that I might not have been prepared for this next leg of the journey as I thought. What would I do if she had breathing issues at home? Our NICU didn’t have room for us to stay with her 24 hours so I had never taken care of her on my own for a whole day. I was completely overwhelmed with the thought that I was about to be fully responsible for this little life. I knew that her schedule would now become mine, but what I wasn’t ready for was the one major thing that would now be missing from my schedule: The NICU. As I reflected over my journey, I became emotional thinking about that fact that I would no longer step foot in this place that I spent 3 months in. It was there that I found another family and made amazing friends. It was there that my heart was both broken AND healed. It was there that I watched God perform one of the most amazing miracles. I was about to walk out of there with my baby and (in my mind) never return again. I am already TERRIBLE with goodbyes and surprisingly this was no different. One of the things I really didn’t think the NICU would teach me is to cherish EVERY moment. I was so busy trying to get to the end of the journey to start Day 1 with my baby girl that I was rushing through her ACTUAL first days. One of the most precious lessons learned while in the NICU was to cherish every single moment and document it. Whether you keep a journal, take lots of pictures and videos or both you want to keep a great account of your little one’s time in the NICU. You’ll come to find that it’s not just to look back on their growth but yours as well.
These are just a few of the key lessons I learned during my daughter’s NICU journey that have really stuck with me. I share all of these with all of my mentees so that they don’t have to learn some of what I did the hard way. But the biggest lessons would come AFTER we departed the NICU. Although, by this time, I had connected to several NICU parents via social media, NO ONE could prepare me for the journey and subsequent lessons to come.
To Be Continued...