Eyes Wide Shut
Posted by realityrounds on November 16, 2009
“Nature will bear the closest inspection. She invites us to lay our eye level with her smallest leaf, and take an insect view of its plain.” – Henry David Thoreau
The March of Dimes has christened November, Prematurity Awareness Month. On November 17th, the MODs is requesting bloggers to post on prematurity to raise awareness, to Fight for Preemies. In order to Fight for Preemies, you must be aware that a battle actually exists. Are you aware? Can you look at the picture above, the picture of the beautiful infant tucked in loving hands, the infant with dark pleading eyes, and be aware of the battle that awaits? It is easy to pretend that this is just a mini-infant, pint-sized and cute. It is easy to plead ignorance of the battle ahead for both the beautiful infant, and for the hands cradling him. How do I know this? I know because I remained ignorant, and unaware for a long time.
When I first started my career in the NICU, at the ripe old age of 22, I was ignorant beyond belief. I choose to go into NICU nursing because I thought it would be EASY, yes easy. I had worked for a year in adult neuro and neurosurgery. It was back-breaking work. Working for infants must be a lot easier. Preemies are small. It would be fun to hold and rock and feed these little peanuts. How naive I was, and how naive I feel that the public is of prematurity.
The first time I walked into a NICU I was floored. It is an alien world of cardiac monitors, alarms, ventilators, glowing lights, IV pumps, radiant warmers and isolettes. I had a science degree and four years of nursing school and I was completely overwhelmed by this battlefield. Imagine how the parents feel. Imagine what the babies feel. One of my first patients was a tiny 28 weeker with umbilical lines, multiple IV drips and on a ventilator. I was terrified to touch and handle this baby. So tiny and vulnerable. How could my hands help to heal this infant? Is it possible to be gentle enough? It took my preceptor much support and coercion to get me to handle this fragile preemie. I was unaware.
It took me many months of hard-core, war zone, NICU nursing to become aware. To be come aware of the extreme efforts, resources, intelligence, compassion, faith, and teamwork it takes to care for a premature infant. I honestly thought that premature babies just needed a little warmth, and food and they would grow and be discharged as if they were now a term baby. This is what I wanted to believe. After 16 plus years of NICU nursing, I am certainly not unaware anymore, or am I?
I am still unaware of what the parents of preemies must endure, to fight this battle for preemies. The everyday struggles for their children. The time spent in the war zone of the NICU. We all hear the miracle stories, and these stories are important, and we should hear them. But we should not ignore the struggles of the families who are not so lucky. These are the battles we must not ignore. Saving a preemie’s life in the NICU is a tremendously important and noble battle. But this is only one fight. It is a mistake to focus on winning one battle, while losing the WAR.
We must Fight for Preemies not only in prevention and NICU care, but in the long haul. It can seem to the lay public that the high-tech world of the NICU is glamorous and heroic, and discharging a baby from the NICU is where the story ends. But it is only the beginning. We must open our eyes to the long-term care and support an ex-preemie will need. It can mean a life-time of care. These preemies and their familes need our support and awareness more than ever. Let’s not abandon them in this fight.
Supporting preemies and their families means more than prevention and high-tech NICU care. It means lobbying for support and research beyond the “golden” age of two. The conventional wisdom that preemies will “catch-up” to their peers by the age of two, so bye-bye. Nice knowing you. There needs to be more long-term research to help these infants and families in directing care, development and education.
Let’s promote awareness. Let’s open our eyes, even if it is difficult to look. Let’s Fight for our Preemies!
RR
prem2pram said
We are fighting for premature babies by stocking the Toddler Dictionary which is in aid of bliss the charity for babies born too soon, too small and too sick.
The Toddler’s Dictionary is a great booklet in support of Bliss – the charity for premature babies. It makes a perfect stocking filler for Christmas and is packed with hundreds of tots’ words (including translations)
Please visit our blog http://prem2pram.wordpress.com/2009/11/14/a-toddler%E2%80%99s-dictionary-in-support-of-bliss/ to read more about the Toddler Dictionary
Cassandra said
God bless you. I don’t say it often, but I truly mean this. I am the mom of a former 27 weeker (who is now 2). Thank you for all you do for our babies, but even more so, thank you for thinking of the parents of those babies. Too many NICU workers forget about us. We are grateful to have you and thank you for remembering. Your insight of how NICU discharge in many ways is a new beginning is right on target.
Thank you. It’s all I can say.
MoDLin said
Thank you for all the great work you do a a NICU nurse. You’re right about most of us being naive about the trials and tribulations a family with a preemie goes through. I work for the March of Dimes, but I didn’t truly “get it” until my grandson was born a preemie. Thank you for your ongoing work and for reminding all of us to fight for preemies.
Loralai said
If there is 1 thing I would like to see done away with to help with the myths, it’s the “catch up by age 2″ mantra that doctors, nurses and so many other repeat. This is an extreme disservice to preemie parent’s expectations, the general public and even some doctors. With the advances in medicine today, and the fact that younger and younger babies are being saved… a 23-28 weeks is NOT going to “catch up by age 2.” While there are miracle stories out there, the sad reality is that your child is and always will be a preemie. They don’t outgrow it. The parents are forced to feel like a failure when this popular mantra does not hold true. And they wonder why at age 3, 4, school age and beyond they are still seeing doctors, nurses, therapists for problems ranging from behavioral, vision, physical, hearing, lungs, and much more. Let’s take the first step by telling the truth about these extremely premature children and stop with expectations that set a parent and a child up to fail.
enjoybirth said
This article, which I read many years ago, not long after my son got out of the NICU, really captured my experience and feelings. https://pantherfile.uwm.edu/hynan/www/MINNAEP.html
The work you do is amazing and important! Yes, let’s all fight for preemies!
Lisa said
I’ve had former premies as students; the parents had been taught to expect their kids to catch up in 10 years, not 2.
paula said
My preemie (IUGR 29 1/2 weeks) is almost 9 and this post *still* resonated with me. Thank you for (in addition to doing this tough job in the first place!) remembering the parents and for pointing out the the battle does not end at discharge. Our DD passed her followup screening at 9 months of age, so we were told she would be fine (who knew these doctors could predict the future?!). As it turns out, DD is doing great in school, but does carry “scars” that *daily* impact how we have to parent her.
Laura said
Yeah, 12 years later for my 34 week, low apgar child and the diagnosis keep rolling in. Yes, he walks, talks, and breathes, but no he is not “normal” he will never be “normal”, and it pisses me off to think of the NICU nurse who watched us put him in his car seat and said ” you’ve got a normal, full term baby now! Just relax and enjoy him!” Uhm, well, starting with his first at home aepnic incident, on up the the latest IEP meeting, I do enjoy him and he is not a typical kid.He never will be. I am grateful that he lived, but angry that it had to be such a mystery, to me and to my fellow preemie parents. I’m glad to hear there are NICU nurses who get it.