Hand to Hold's Official Blog: Written by Parents for Parents

5 Ways to Tap the Power of Your Preemie Parent Voice

I bet you can remember the moment you found it. nicu

Possibly, it was the moment you realized you would soon become the parent of a preemie child, the moment your pregnancy came to an end, and even though your heart was broken, you decided to believe.

Maybe it was within the first few days of your child’s life, when a doctor gave you the darkest odds for your little miracle. And even though it did not look promising, you decided to sit by that incubator, and pray, anyway.

It could have been a few weeks into your NICU stay when a nurse, however well intentioned, handled your already fragile baby too rough for your liking, sparking an instant flame.

Or maybe it was a few days after discharge from the NICU, when a family member neglected to wash their hands before reaching out to your baby who doesn’t need to see a hospital again, that brings it through.

All NICU parents have that moment, when we first are willing to take on the world and any army to protect our little fighters.

The moment that leads us to our preemie parent advocacy voice.

The preemie parent advocacy voice is our most important tool, a trusted companion on the road to raising a child who is born too early or with any kind of special need. That voice is our guiding light, enabling us to take part in the care of our babies even when their life seems out of our hands. It encourages us to ask questions, search for answers, and challenge anything that doesn’t feel right in our spirits. The preemie parent advocacy voice saves lives.  It can help save your baby’s life. And after the NICU, it becomes even more valuable.

But it must be strengthened.

Each new stage in your child’s life will require your oversight.

You will have to speak for them.

As the time goes on, every decision and declaration will become more and more difficult. Whether choosing procedures, surgeries or schools, a day care or therapist, to go on a trip or to stay home from a family gathering, your preemie parent advocacy voice must be willing to increase in volume when needed. If your child is faced with delays, that voice will be an integral participant in school meetings, hospitals, and in the presence of specialists. Your voice is powerful.  You can never doubt it. You must always trust it.

Like any tool, your preemie parent voice must be sharpened. Your child is counting on you to make the best choices and that takes work. Preemie parents don’t know everything, and we definitely aren’t medical professionals. Therefore, in order to work most effectively, the preemie parent advocacy voice has to be developed. There are five rules to truly tapping into your preemie parent power:

  1. Your preemie parent advocacy voice must be fearless.

You are your child’s best advocate. Never be afraid to do or say what needs to be done or said. And don’t apologize for it. When I first brought my son Jharid home and enforced strict rules to prevent him from getting sick, I did so with consistency and unapologetically. If you love my child, you won’t have an issue with protecting him. You know where he was for 5 months. Never be afraid to speak up.

  1. Your preemie parent advocacy voice must be informed.

You cannot guide if you have not read. READ. Assess the options. Talk to professionals and fellow preemie parents. Buy the books. Become a parent expert. Take the time to inform yourself no matter what the issue. You will be smarter and most importantly, your voice will be more confident.

  1. Your preemie parent advocacy voice must be respected.

You are the mom. You are the dad. Your wishes and decisions must always be respected. Anyone who doesn’t respect your parent voice is not on your child’s team and should be ejected from the game.

  1. Your preemie parent advocacy voice must be willing to listen.

Don’t be a know-it-all. Knowledge comes from listening. Doctors, nurses, family members have something to add. Listen and consider. People will respect your voice more if you also respect theirs. Don’t listen to speak, listen to learn. Your baby benefits from perspective.

  1. Your preemie parent voice must be worked on with love.

Use it. Inform it. Cultivate it. Share your knowledge with others. Research and attend meetings. Try new things. Stay open minded. Work on your voice so that when needed it will be STRONG. You are your child’s best advocate, so be the best advocate.

Becoming a preemie parent brings on strength we never knew we had. The situation is often life or death for our precious babies. Honor your preemie parent voice, and it will serve your baby well. Your preemie parent voice is one of the greatest forms of love you will ever be able to give your child.

Kaleena Berryman About Kaleena Berryman

Kaleena Berryman (NJ) is mom to Jharid, born at 24 weeks, in April 2012. After five months in the NICU battling complications such as ROP, BPD, Grade 3 brain bleeds and NEC, Jharid came home to his mom and dad a healthy, happy, thriving boy. Even though “Mom” is her most treasured title, Kaleena is also a writer, poet, mentor, and Program Coordinator for the Abbott Leadership Institute at Rutgers Newark. She wants to help other preemie parents develop their advocacy voice. Kaleena has a B.S. in Communication from William Paterson University and a M.S. in Public Administration from Rutgers University. She is the founder of a preemie parent support blog. Connect with her on Facebook.

Comments

  1. This is a very good article as what ever brought you into that situation until you find that voice your reacting to what has happened.
    I also love that you speak of listening and taking advice openly but remind people that ultimately that child will be you responsibility long term. The docs and nurses jobs end and yours begins.
    I am a researcher and the minute I heard I ruptured I went on a research mission. I found out that my rupture could have been prevented if I had been an advocate earlier but life is what it is and mistakes are made even with good intentions.
    I spent three weeks reading every study I could and what current treatments might be in our future and I decided what I would and wouldn’t do and what I would weigh if the time came. Knowledge was powerful it gave me a new language.
    The day the NICU doc came to talk about where my son would he I asked those hard questions you don’t normally want to face. I wanted worst case to be prepared.
    I happened to rupture in my non home state so I didn’t have a set doc for delivery. I grilled each doc about what their process was and their personal choices. I asked each about delayed cord clamping in preemies and got there answer. I had one doc say she would research it and to my utter joy she was on staff when I had to have an emergency c section and during my c section delivery that she let me watch ( not a norm but I explained no matter what I wanted any moment I could to see my baby living ) I watched her stay hands ready to cut that cord. A triumph to me. She she listened and I explained and she felt with her expertise it was possible. A combined effort.
    Later there were things I did that felt right. Providing Breast milk no matter what even when it wasn’t mine ( a safe donor) and adding probiotics ( now standard in some hospitals) and my refusal of vaccines wich didn’t go over when but I listened and stood my ground based on scientific studies not hearsay. I was respectful and heard everything thing they had to say but wouldn’t change my opinion of having them administered to my compromised baby that early.
    You are completely right there are those moments where you just need to find that voice as ultimately you are the parent something having a preemie takes away from you at first when you feel there isn’t much you can do for your child. When you feel helpless in the face of so much. That first call brings that feeling back. Connects you again to the role of parenthood even in the NICU.
    ( I don’t suggest anyone do what I did as it is each person’s personal path. I also know there are those that agree and disagree with my opinions and actions and that’s ok. Ultimately any consequences were mine to bare. )

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