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

Managing Multiples in the NICU? Don’t apologize.

Reflecting back on my time in the NICU I got to thinking, what can I tell you, after almost 6 years since my twins were discharged from hospital? What else do I have to say about managing multiples in the NICU?

Through my work with families of multiples and prematurely born children, I have heard many questions and concerns from hundreds of parents. I have watched ecstatic, happy posts go up on Facebook walls and personal profiles, but I have also seen scary updates and the saddest of news. In all of these instances, I have seen the parents’ circle of friends and support networks come together to support the families through good and bad times. Your family and friends will be there for you.

Whether we like it or not, social media and instant connection to our friends and family near and far has become a part of our lives. We live in a fast-paced society, which expects immediate updates of all that is news worthy. It’s a hard expectation to live up to when you have multiple births babies living in a neonatal intensive care unit, which is even more complicated when those babies are separated and admitted to different hospitals. And as we know, the feel of the neonatal intensive care unit is usually a much slower, sometimes snail pace, in comparison to everyday life.

When you are in the NICU with twins, triplets or higher order multiples, you are not only having to manage one baby’s health care needs, but two, three…It is going to be exhausting trying to keep things straight, who’s experiencing what, the times each baby will be having assessments, what medication they may need to be on, and then you need to get some sleep – have you tried sleeping when you have multiples (even a singleton) in the hospital? It’s hard! You may feel half-rested, as you try to sleep “with one eye open” or keeping your ears perked, half listening for the ring of your cell phone sitting by your head. You don’t want to miss anything, so it is hard to get your body to be at one hundred percent rest.

Twins come home

So when it comes to communicating with your friends and family, as we don’t have hours to be on telephones updating each friend and family who would like to be kept up-to-date, here are some thoughts for you, which apply to parents of multiples and singletons too:

  1. Create a Facebook group: You can establish a private Facebook group, which is only accessible to those you invite. Setup a good friend or family member to be an administrator of the page, so you, the parents, do not need to monitor the requests to be added. Let someone else do that job. Once your group is up and running, you can post a bit about the story of your babies’ premature arrivals and an update about their progress to date. You should indicate to your group members that you will update when you can. Try not to commit to a daily update, because some days that’s just not going to happen.
  2. Social Media Rules: Establish with your friends and family how much you are willing to let them share with their own social networks, whether it’s through verbal updates or sharing across their own social media. If you do not want your children’s updates going out to “just anybody”, establish a rule with your network to ensure your children’s best interests are being met.
  3. Don’t Apologize: If you have a rough day or even a rough week because your babies having been doing the 1 step forward, 2 steps back dance, don’t worry about heading to Facebook to submit your daily report. It’s okay to avoid social media altogether if you need to focus your attention on the babies or you just don’t want to be sharing updates for a while. It’s up to you. Don’t feel obligated or apologetic if you cannot get on to social media. Sometimes we need a break and that is okay! There will always be time to provide updates and post photos along the way and your family and friends will understand. No apologies required.

Ultimately, how often you use social media to relay messages about your babies is up to you. Perhaps it’s once a week, maybe it’s as needed. Your top priority is to focus on helping your babies get strong and well enough to go home. There will always be time for social media and storytelling when you are ready.

Carolyn Leighton-Hilborn About Carolyn Leighton-Hilborn

Carolyn (Ontario, Canada) is a mother of three premature children. In 2008 her first son arrived at 31 weeks; she trusted her instincts and made it to the hospital in time. In 2010, she had identical twin boys at 27 weeks. The twins' NICU stays lasted 3 months and just shy of 4 months. During this time Carolyn felt extremely isolated and began to reach out via social media. On her personal blog, she writes about raising preemies, twins and parenting topics; you can also find her on Twitter. Currently, she is a peer health worker in her local multiples organization, Chairs Multiple Births Canada’s Preterm Birth Support Network and joined the Board of Directors of Canadian Premature Babies Foundation.

Comments

  1. Susan Hundley Sullivan says:

    This is such a great article for the world we live in now. Social Media is second nature to all of us. While you have great suggestions, the only thing you did not include was the fact that for some, total privacy is what is desired regarding their preemies.

    When my daughter went into sudden labor at 24 weeks with my identical twin granddaughters, we updated our family and friends and asked for prayers. Thankfully, labor was stopped and my daughter was transferred to a larger hospital with a level 3 NICU. 10 days later her water broke and 4 days later, the twins were born. In those two weeks, the response of family and friends were encouraging and helpful. When we announced the twins births, the responses were filled with concern. Good intentions, but obviously everyone really did not have the right words to give us the hope we needed.

    At this point, my daughter and son-in-law decided to remove themselves completely from all communication on Social Media and asked close family to do the same. I was at the hospital every day and the other grandparents got daily updates. The ups and downs of NICU life with such fragile twins, was all my daughter and son-in-law could deal with. While others may get relief from sharing this time with others, they did not. EVERYONE understood – not one person was upset. It was the day after the twins came home, that updates started again.

    When the twins turned one, I asked my daughter and son-in-law if I could share the montage video we had of the twins first year. They agreed and while there were so many wonderful comments, a few were hard to read. They were of the ilk of “WOW – had no clue they were that small,” to “Will they now be okay?” I know those commenting had no clue that they were inappropriate.

    From the day of my granddaughter’s births, they were so beautiful to me. They were obviously true fighters. So, while many do take comfort in updating their preemies NICU stay, others may appreciate having their privacy.

  2. Facebook was not popular when my twins were born in 2008. I remember hearing a radio show intern mention it when I was still commuting for work before they were born, and she said it was “so much better than MySpace,” and I thought that was just impossible. Anyway, I often wonder how I would have conducted my social media activity, had I been as active then as I am now. Back then it was all chain emails! 8 years ago = the dark ages in social media. 🙂

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