Not Alone – Emotional Holidays after the NICU

The holidays can be a bittersweet time for many preemie families.  There is, of course, joy and time to spend with those that we love and the holidays with a child is always exciting.  At the same time the holidays can be a reminder of the hurt that comes with a baby being born too soon.

Many families are choosing to keep away from larger family gatherings in efforts to protect their children.  All too often, these parents are criticized for being “too overprotective” or “paranoid”.

Other families are spending the holidays with a child, or children, in the hospital.

Some families are reminded that their baby, who has passed, won’t be part of the holiday festivities this year.

And then there are families who struggle with PTSD or PPD and even though they know they are supposed to be happy…and maybe everything worked out as well as it could have, but they still are silently struggling to get through (never over) the pain of their baby coming too soon.

To everyone who is feeling a little bittersweet, I want you to know, YOU ARE NOT ALONE.  From our family to yours, we send you the warmest hugs and wish for you moments of comfort and joy.

For the holidays, remember the wisdom of zebras:

zebra

And most importantly, remember you are not alone.

If you’re feeling bittersweet this holiday season, please leave a comment – you may make someone’s day by sharing that you’re feeling what they are too.

I’ll share first:  I’m missing my family in Wisconsin.  My brothers and nieces and nephew, aunts, uncles and cousins.  I’m missing my niece and nephew that moved to the East Coast and I didn’t get to say goodbye.  I miss time with my family but am also grateful that I’ll be with Kyle, Kellen, Owen and my inlaws.

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© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

20 thoughts on “Not Alone – Emotional Holidays after the NICU

    • We loved the Hungry Caterpillar metaphor, too! I always read it to my son in the NICU as eating encouragement, and told him the isolette (God, how I still loathe that word) was like the cocoon.
      Now my son likes to “read” the book himself and list all the foods and talk about how the caterpillar is “still hungry.” He’s still not terribly motivated about eating, but you can’t win them all.

      • Ahh, now i get the Hungry Caterpillar. We have a couple copies of the book – I think it’ll be one of Owen’s new favorites (whether he likes it or not :-))

  1. Thanks for posting Tatum! Yes, the holidays can be hard. Although, I love Jackson more than anything in the world, I sometimes think, “what would he be doing this Xmas if he didn’t have the grade 4 bleed or was not born at 25 weeks”. Would he understand Santa, be able to run in the snow or eat a Christmas cookie? I cherish my sweet boy for who he is and what he CAN do but sometimes those thoughts find a way of creeping their way into my brain. Happy holidays to your beautiful family!! Love reading your blog!

    • Those dang “what ifs”. I’m with you Sara. Babies that are Owen’s corrected age always make me a little sad. It’s hard to not wonder what our kids would have been like had they got the start they deserved.

  2. I was really feeling bittersweet the past couple of days. We are hosting Christmas this year and I am very happy to but with our preemie I am left wanting for time to get the house ready. I have recently started reading other preemie moms blogs and have been really relating to feelings and started to finally process this whole journey. I guess I have been grieving over just how hard it has been. Why did our son have to struggle and fight from the time the placenta implanted? I do know that I was meant to be a preemie mom. I am definitely changed and trying to find that balance and new “normal”. I never imagined getting ready for Christmas would include strategically placing hand sanitizer around the house and asking my sisters who are nurses to bring some masks in case anyone might be sick and maybe some extra signs reminding others to wash their hands. And I worry about stressing him out again, he is such a social baby and doesn’t like to sleep with so much activity around and it throws off his schedule for a few days. At least we don’t have to travel as the last couple of trips I get stressed and not enough sleep and it affects my milk supply and I really get in a tizzy worrying about losing my supply completely and how might that affect his immunity and weight gain. I am fortunate to have family close but it is still hard for me to ask for help for everyday things like cleaning or maybe watching the little man so I could maybe take a nap, I feel like it has to be a valid need to have and not just a nice to have. I used to be able to do all that stuff before without help. We are also going to skip a larger family Christmas event to be precautious and my mom was disappointed but understanding when I told her and I know others will be disappointed and I hate that but we need to do what is best for the little man.

  3. This Christmas is my daughter’s due date, and she will be 15 weeks old instead of newly born. We will be sharing cookies with the nurses who are not home with their own families, and going home to a house that has no tree, no decorations, and no presents because we have spent every spare moment in the hospital instead of at the mall. And while I don’t need to be reminded that my daughter being alive at all is a greater gift than I could have imagined, I need the space to feel sad about all the things her first Christmas isn’t. Thank you for giving me that space.

    • You definitely deserve that space to occasionally grieve lost expectations. I hope your holidays with the nurses and doctors and your daughter had bright moments this week.

  4. Everything is shaping up for the holidays…that is…until we all got a case of the flu -.-

    As luck would have it though, Rayven took it better then all of us, so, yay!

    I’m trying to focus on all the good, hoping that will help. Its taken me awhile to get into the “spirit” but, its showing up.

    • I hope everyone is feeling better, Ashleigh. We were in the clinic on Christmas eve with Kellen for croup – he chose to open presents in his pj’s. Sickness shouldn’t be allowed on the holidays.

  5. Our 26 weeker turned one this past Wednesday and I’m happy to have him home for his first Christmas at home. I’m reliving last year’s scariness the past few days and being completely amazed by what a difference a year makes. I truly never thought we’d get here. Hugs to all who are in the NICU now.

    • Agree, hugs to all in the NICU. In our time, we’ve spent some portion of every month but Nov and Dec in the hospital, so many holidays, but never Thanksgiving or Christmas.

  6. Though I don’t have a preemie, I think that, like most things that get me down, this feeling you describe revolves around expectations. Even as a little kid, I was a bit of a Martha Stewart and a perfectionist and any deviation from my expectations of the season was liable to throw me for a loop and put me in a funk for days. I think this was and is partially perpetuated by the media blast of smiling groups of lifelong friends in perfect settings enjoying perfect moments, with images of luxury gifts and hundreds of present piled under a tree, beautiful homes decorated to the hilt and perfectly neat and clean inside and out, and perfect families eating perfect meals wearing perfectly trendy fashions and doing so in what seems like perfect bliss. I have never felt that I have measured up to any of these scenes of perfection and I allowed that to affect my perception of my own real life holiday story. It continues to be a struggle, but what it comes down to for me is forgiveness of my imperfections and a willingness to laugh at and with myself, and to open up and talk about these feelings, which we are doing here.

    I can’t begin to understand the situation that you are all in as I have no children of my own, but I am truly amazed by all of the love, dedication, self-sacrifice, altruism and bravery I read about on this blog and in these comments every day. I don’t know that I could last 2 weeks doing what you all do every day. You have had to adjust your expectations for your pregnancy, birth and the outcome for your child, and face friends and relatives who may not be as supportive as you would have expected or wished them to be.

    My wish for you is that for every disappointed or adjusted expectation, you find two unexpected moments of support, joy or achievement that reduce some of the PTSD you deal with and lift your spirits during this spirit filled holiday season and beyond.

    Finally, I think one of the most difficult things to do for me personally is to ask for help, and it is something that I struggle with often so I understand the difficulty in doing this, but there are people who are reading this blog or within your network of family and friends who are standing by wanting to help but who don’t know how to ask what you need. Whether it is help with cleaning, laundry, decorating, visiting and relieving you for a nap or a pedicure, skyping with you over a glass of wine if you are on flu lockdown, or cooking some meals for you, they are a supportive army ready and wiling to help in any way they can. People lead very busy lives these days, but I have found that if you can break something down into multiple choice, manageable chunks, people are happy to pitch in. For example, if you send out a request asking for 2 hours of cleaning assistance every Saturday or Wednesday morning, you provide those who work full time with an option to help, and those who stay at home a different option if Saturdays don’t work for them.

    Sorry for the long post, but i wish every one of you here a peaceful and restful holiday, wherever you are spending it. Doing what’s healthiest for your child is the right thing to do, and even if someone in your family is disappointed by this, they know that, too (and when people say things like, ‘oh, they are too paranoid’ what they are really saying is that they are disappointed they will not get to see you this year). If you are missing your extended family celebrations this year try skyping with them or asking them to leave a webcam up so that you can be part of the celebration from afar. Perhaps not the most optimal solution, but think of it like you are getting the benefit of family without Uncle Oscar asking you to pull his finger (;

    • Thank you for this reply, Diana. It’s nice to know that even those that are in the preemie community “get it”. xoxo – hoping for a prosecco date soon.

  7. Every year the youngest person at our church’s family Christmas Eve service gets to put the baby Jesus in the nativity. Last year, I told my husband excitedly that our baby would probably be the youngest. I was around 21 weeks pregnant. Instead, this year we’re on RSV lockdown and can’t go. Even with the wistful thoughts of what could have been, we feel very fortunate to be celebrating Christmas as a family this year even if we can’t go to church or big family gatherings.

  8. Another wonderful post, Tatum. This is my third holiday season on lockdown, this time because of my bedrest rather than my son’s pulmonary status. Each holiday season has gotten a little easier. And in some ways, the holidays are about the memories and I try to remember the good stuff. His first Thanksgiving in the NICU I remember rejoicing with an aunt on the phone because he was about to hit three pounds. Last Christmas I watched him slide down his toddler slide into his dad’s arms. This Christmas he knows who Santa is. And while I’m sad that he has yet to have the wild, run around with his cousins Christmas that I keep hoping for every year, I also treasure the time with our small family.
    Hope you all had a wonderful holiday!

    • Thanks, Leda. Great advice. It was a very nice Christmas, you’re right, there is something nice about being home and just a small group coming to us. We didn’t have to sit in traffic and spend hours in the car. Just our cozy house.

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