Less than two weeks ago, Nicole Lyons started the Facebook group “Parents of Preemies – Ottawa” and the response has been amazing!
“I was inspired to create the group after an acquaintance posted a preemie question on a moms’ group, and was bombarded with information that she couldn’t use. Fifteen months ago I was in the same situation when my son was born preterm. My husband and I didn’t know where to go for support or how to meet other people in the same situation. We felt incredibly isolated since our friends and family couldn’t relate to what we were going through; and, like my friend, we received a lot of advice we couldn’t use. I could see there was a need for somewhere that was specifically designated for parents of premature babies.”
The response for the group has been overwhelming. Within 3 days there were already 35 members from the Ottawa area, all joining due to word of mouth. The group is a mix of “experienced” preemie parents and new parents who currently have a child in the NICU. There has never been a support group of this kind centered in social media before and everyone who has joined has been grateful for its creation. There is a lack of information for parents of premature babies about where to turn to and, let’s face it, when you are busy with a child you don’t have time to go out to community-based support groups. It has been a huge comfort for people to talk to others who can relate to the stresses, confusion, and joy that comes with being the parent of a premature baby.
It turns out a lot of parents felt the same way Nicole did — isolated and overwhelmed. One group member recalls the frustration of returning home from the hospital and having to leave her child in the NICU only to hear comments from other moms like, “Well at least you don’t have to deal with a screaming baby all night” or “it will give you time to prepare things before the baby comes home.” No parent of a child in the hospital wants to hear that. The parent of preemies would have all rather brought their babies home like so many other parents, screaming all night or not. These moms and dads have suffered through many sleepless nights themselves — without being able to hold their babies – because many were still getting up to pump breastmilk every 3 hours and having nightmares of alarms from heart-rate monitors or images of our babies turning blue from apnea spells. Not being able to be with your baby 24/7 can be devastating, but each of these moms has been able to get through it, despite their own personal struggles.
Parents have been willing to be very open about the ups and downs of life in the NICU. Some members are more vocal while others just enjoy reading the stories and knowing that there is someone out there who can relate. Each mom deals with her situation in her own way. Some moms have even created their own blogs to share their experience. Meggan Larson, for example, shares her journey through a complicated pregnancy to the delivery of her son at 33 weeks at www.prayforteamlarson.blogspot.com.
Members have also been able to share their struggles with life after the NICU. Whether it has been issues with breastfeeding, trying to determine if your child is developing at the right pace, or fears of having another baby; it has brought comfort to know that there are others who have
dealt with the exact same issues. And that’s the main idea behind the group – being able to comfort each other through the difficult times and cheer each other on through the good times.
Nicole is now trying to grow the group to reach more parents in a safe manner. Members of the group have been eager to offer advice, emotional support and ask questions. The openness and care people have shown is inspiring. Parents who have been though the journey of having a child in the NICU are now volunteering to partner up with new parents as mentors. One common thread is that so many people want to help others in the same situation.
Within 24 hours of starting the group Nicole had delivered two packages to parents within the group who have babies in the NICUs in Ottawa. Within three days she had messages from others wanting to help by donating homemade preemie safe soaps, handmade blankets, hats, diapers and clothes to put more packages together. The rules for direct hospital donations are also constantly changing so the group is currently focused on the packages going directly to group members and then beyond. The goal is to let other parents know that there is somewhere for them to turn to for support outside of the hospital.
Group members are discussing how they can help the local Special Care Nurseries by fundraising and donating. Nicole Lyons is open to any suggestions and has been completely inspired that her platform has encouraged others to help as well. If you would like to help, please contact Nicole through Facebook or by email firstname.lastname@example.org.
Picture credit : Shelby McCarthy
Picture credit : Nicole Lyon’s son 33weeks at Civic SCN