I was born premature and spent quite a few days in the NICU…. so this speaks to me……
A shortlist of things that if given the chance, NICU babies could say……
- I want to be held.”
Just before I was born, I was enjoying a buoyant bath in warm fluid that had such a calming effect on me while I listened to the steady beat of my Mommy’s heart and soothing hum of her breaths. Even the cacophonous sounds of her bowels does not compare to the frequent noises I hear outside now in this strange NICU space. From the time of my conception, I enjoyed this meditative, cocooned environment only to be harshly disrupted by my delivery. My perpetual bond with my mother is gone, and as much as I try to communicate this I spend most of my day lying here alone, reaching out for some human touch. Whenever you get a chance to touch or hold, please go ahead. It gives me so much relief to be close to another human being again.
- “It hurts.”
Even though there was a time when medical doctors believed that babies like me did not feel pain and thus there was no need for analgesia, I want to reassure you that I do feel pain just fine, and lots of it. I can give you so many examples of when I feel pain or discomfort that I get tired and overstimulated. I sometimes just want to sleep or go back into my mother’s womb. Could you please pay attention to my face? Yes I know it is small, but it is one of the main ways I try to convey how hurtful some things are to me. If you are waiting until the time my heart is pounding and I can’t breathe very well, then I am done, simply done. Can you please find another way to know when I am spiraling down in discomfort? Also, I want to remind you that no matter how young I am, I really like my pacifier to suck on. Figure out a way to keep it in my mouth and I will be eternally grateful. Sugar is sweet but for me it triggers opioid pain receptors to truly give me real pain relief. Just don’t use too much because it doesn’t work so well after too many doses. I really like being held when I am feeling pain and in particular being held by my own parents. When I am older and can swallow my milk I also look forward to getting great pain relief from breastfeeding from my Mommy.
- “I am hungry! No, seriously, I am very hungry!!”
As a premature baby I am growing faster than any other stage of my life. Compared in relative terms by weight, an adult would need to gain 2-3 lbs of weight gain every day to match preterm growth rates. Unfortunately this means that I find myself hungry often. Every day you don’t provide enough calories, protein or other nutrients I am hungry, and when I am hungry for even a day, I don’t grow so well. Still, many units don’t immediately start babies like me on early protein in my intravenous nutrition from the time they are born. Also when you feed our guts sometimes you can take too long to fortify my mother’s milk — so please start some of this before I am halfway up on my feeds. My growth continues to be so bad that by the time I am ready to go home, if you plot me on a growth chart I know that I have a very high chance (40-100%) of falling behind 90% of my healthy peers. Please remember that every day of nutrition counts.
- “Why do you keep feeding me according to a clock?”
My body tells me when I am hungry and it really never follows an every three hourly schedule. I sometimes get so frustrated that I get my milk when I don’t need it and can’t get it when I am starving. I really wish you could get this right most of the time because it wreaks havoc on my behavior and sleep pattern. When I am learning to take my milk by mouth, can you figure out a way to keep me from being hungry that works with everyone’s schedule that is so busy too?
- “Where is my Mommy?”
I spend most of my days alone without my family. I don’t recognize the many faces I see although some are more familiar than others. I know who my Mommy is by her face and how she smells. If my Mommy is not here, please remember to at least give me some of her milk to remind me of her and give the best fighting chance against all the infections I could get and against the terrible disease called necrotizing enterocolitis. By the way, my Mommy’s milk tastes so much better than the preterm formula that you want to give me so often. Please help her make as much as possible so I can feel safe and protected.
- “I am bored. Can someone please read to me?”
It is not easy being trapped in my bed. I want to look around and try to make sense of the world around me. When I hear the voice of another human being it excites me and gets my brain whirling. I really like listening to people talk or read to me and even though it doesn’t make a lot of sense to me, it calms me and I feel energized by the experience. Perhaps you could occasionally play some soothing music every now and then just like my Mommy would have done had I just stayed inside of her.
- “Can you just turn the lights out and be quiet!”
Most of the sounds I hear are foreign to me, they startle me and I am not comforted by most of what I hear. I wish I could plug my ears but I can’t. Sometimes the noises I hear lying in my bed and in my incubator can get very loud. The incubator echoes any sounds that are made outside. If you can please use inside voices it would help a lot. Even the opening and closing of the side ports startle me out of my sleep. I heard that the developmental care practice called NIDCAP did not show it could improve my long-term developmental outcomes, but I still want to plead my case that I am built to sleep most of the time, so please respect my desire to sleep more than I am.
- “Close the incubator door, I am cold!”
My independent existence is putting some high demands on me, especially to regulate my own body temperature all the time, resulting in the first time feeling cold. Remember that I am lying half naked here most of the time. So every time you open my doors I feel the draft coming in. If you could figure out a way to make a bed that could keep me cozy warm all the time I would greatly appreciate it.
- “Thank you so much for saving my life and taking care of me as a team to give me the best chance on life.”
Despite the fact that there are many things that I wish could get better with my care, I have not lost sight of the fact that I am here solely due to the incredible and valiant efforts of the perinatal and neonatal team that took care of me. You folks are special people that tirelessly kept your eyes on the ball and saved me when I was born, helped my mother get through the birth process, and nurtured me in my most vulnerable moments to reach a safe place of growing and thriving. I am grateful to be alive and thankful to have made it through with all the scary risks that preterm babies like myself have to face. You have been an amazing team of healthcare professionals to offer me a great future that is full of hope and great quality of life. So please take my comments in the best context only to inspire you to keep doing the best you can to saving and improving the lives of each and every one of my preterm friends.