|From Preemie Prints!|
Christmas in the NICU
By Dr. Terri Major-Kincade
What do you say to a family who is spending the holidays in the hospital? It’s already tough enough to be in the hospital for the holidays but to be in the hospital when your baby is sick..well that adds an entire other layer to bah humbug.
In the past 15 years of my career I have spent many holidays in the hospital and countless hours away from my family, but I do understand that it’s part of the job. Yes I signed up for this gig..and I did it willingly. But what of the families in the neonatal intensive care unit? Most families who experience a NICU stay will tell you that it was an amazing experience…but it’s amazing in a way that you don’t want it to be. It’s a strange place to be in the midst of humans so tiny they can fit in your hands, surrounded by both mechanical and human giants. A world of lights, wires, noises and fear…lots of fear. You can only appreciate it…I mean truly appreciate it if you had to spend time there..and let’s face it no one would CHOOSE to be there. Not the teenie preemies who come 3mos early, not the big preemies who come 3 weeks early or the term babies who need surgery. It’s not that parents don’t recognize they are in the best place they do…but then again isn’t the best place for a child with their parent? Therein lies the paradox of a holiday in the NICU.
So how do you spend your time celebrating your holiday on the roller-coaster that is the NICU? In the midst of the what if’s, how longs, will he or she be okay? Will we be okay? One way is one stop at a time.
Stop 1: First journal your time in the NICU
This time though it may seem long now…it will pass. Your baby will hopefully eventually get better and be home before you know it. Choose to make your own Christmas story with your baby being the star. How big are they becoming? How much food are they getting? What milestones are they passing? Off the respirator? Off intravenous fluids? Trying to take a bottle? Doing well after an infection? Needing less oxygen? Recent new test results? Celebrate each and every victory..it’s like your own personal Christmas present…because it is. You get to unwrap one daily with each update. Sometimes it’s what you wanted..other times it’s not. Journal it all..you will want to have it for later.
Stop 2 : Memory making..this is a great time to select your first family ornament in honor of your baby.
What will it be? A mold of print of their feet and hands? A plaque with the meaning of their name? A prayer stone that is blessed and at the bedside? Their first mini-stocking? A set of jingle bells? Their first Christmas photo? Can you record your voice reading your favorite Christmas story or your favorite verses or just telling your baby you love them? There are lots of voice boxes at craft stores, and at build a bear that you can personalize. Or you can read or sing to your baby while you visit and have a loved one record it. This will be a cherished memory..you might even want to update it monthly if your child is in the NICU for an extended stay.
Stop 3: A Gift for yourself : How can you commemorate this time as Mom and Dad?
One of the challenges with having a baby in the NICU is sometimes friends and family don’t know what to say. More often than not though what they do say is not congratulations…it’s more like I am so sorry your baby is in the NICU. Whenever I meet a family in the NICU whether the baby is 1 lb or 10 lbs, I try to take a moment to say congratulations. Because no matter the size of the baby or the seriousness of the illness…something truly magical happened today. Someone became a Mom or a Dad or a Grandmother or a Grandfather and we got to witness the miracle of life once again. That fact doesn’t change because a baby is sick or even if a baby passes. Take a moment to acknowledge your gift. It may be a shirt that says mother or father of a miracle. It may be a charm bracelet that you add too each year. It may be a special frame that holds the only picture you have. It may be time to yourself. Time for each other. But whatever ever it is…take some time for you in the midst of the Holiday Bustle and breathe and process this journey..your journey.
Stop 4: Finally consider making a wish list.
Just once get it all out on paper? What are your biggest fears for your baby? Of course we’d all like to go back and never have been in the NICU but now that you’re here what are your biggest fears for today? Is there a test you don’t understand? Is there a diagnosis that has not been explained to you? What are your fears about tomorrow? What are you hoping for now? What is the one thing that you would like that you haven’t been able to do? Is it to hold your baby? Is it to have a better picture? Is it for the sibling to see the child? Write it all down then share you hopes, your fears your wishes with your medical team.
One of the best gifts you can give yourself during your holiday in the NICU is to make sure you understand everything that is going on with your child. And before you get off the rollercoaster…make sure you ask for the one thing on your list you thought you couldn’t have. Maybe you can hold your baby. Maybe the sibling can see the baby. Maybe just maybe your dreams will come true sooner than you think. But in the meantime cherish every moment. For aftaterall, in the end that’s really what our Holidays are about. …even Holidays in the NICU. Wishing you and your family the best this Holiday Season! And especially to your present in the NICU.
Terri L. Major-Kincade MD MPH
Pediatrix Medical Group, North Dallas
Pediatrix Medical Group, North Dallas
Chair Neonatal Palliative Care Teams THR Dallas and THR Planowww.drterrimajorkincade.com
Preemie Prints is a 501(c)(3) nonprofit organization sharing hope with NICU families through a variety of support programs. One of those programs is the gift of NICU photography and preemie photography. NICU families from across the US can request a no-charge photography session by a Preemie Prints volunteer. The family request from can be found on the right side of our website. These sessions are free of charge and for any NICU family, regardless of time spent in the NICU. The NICU photo shoot can take place inside the NICU or after baby is discharged and at home until their 1st birthday. Facing time in a NICU with a premature or critically ill baby is an extremely difficult time for families. Preemie Prints has a mission to share hope by letting families know they are not alone. Preemie Prints currently has over 100 volunteers nationwide. We are always looking for more volunteers to share in our mission! If you are interested, please email email@example.com and visit our website at www.preemieprints.org. To date Preemie Prints and our volunteers have gifted over 500 NICU family sessions.