Grandparent Perspectives on Life in the NICU

by Kelli Kelley, mom to preemies Jackson and Lauren

Grandpa with Jackson

Photo credit: Kelley Family

“I have always thought of my dad as being larger than life. He is 6’4” and worked in law enforcement. I never knew him to be scared of anything. But when my son was born 16 weeks preterm and weighing just a pound and a half, my dad who had come to my rescue so many times in my life could not protect me. The tall Texan, who I never knew to show fear, did his best to look brave. But his distress was obvious. We joked about his “drive by” visits in the NICU where he stopped only briefly to peek at his grandson in the isolette and then quickly made his exit while doing his best to conceal his tears.”

Watching from the Sidelines
The NICU experience is overwhelming and frightening for parents—and probably doubly so for grandparents. They grieve not only for their adult child but also for their grandchild. Sharon Branson, grandmother to Brooklyn, born at 33 weeks and diagnosed with cerebral palsy at six months, described the experience as “a journey with an unknown destination; a road you have not traveled and have no idea of the twists and turns, bumps and detours you will face along the way and no map or GPS to direct you.”

Many grandparents describe a sense of ineptness as they watch from the sidelines not knowing how to help. “I wanted to fix everything for my daughter from the moment she was born,” said Doug Bennett, father to Katrina and grandfather of Bryce, born at 24 weeks gestation. “Like all parents, I learned that is not possible. I learned it slowly, the first time she was really sick and then again when she first got her heart broken. The hardest thing for me after the birth of Bryce was to have to watch my daughter realize in the first day of his life what most us get to learn over a period of years—that we cannot fix everything for them no matter how much we try.”

Ways Grandparents Can Help
But there are things that grandparents can do to lessen the toll a NICU experience takes on their adult children and the family as a whole. I remember my mom painting my toenails, washing my pump parts and cooking me my favorite foods. She also held me while I cried and encouraged me when the road seemed too long and daunting. I needed her so much and it meant everything to me to know I could lean on her for support.

NICU parents need and rely on their parents’ strength to help them through possibly the most difficult challenge they have faced in their lives. “There are times in life when there is a lot to be said for being stoic and this would be one of them,” said Mary Dudley, grandmother to Jackson born at 24 weeks. “When I entered Kelli’s hospital room for the first time, the first thing she said to me was ‘do not cry.’ I knew I had to be strong for her, but it was not easy.”

Connecting with Other Grandparents
In order to be strong for their children, grandparents often find solace and strength by connecting with others who have shared their experience. “I highly recommend networking with other preemie families,” said Gay Molise, grandmother to Wilson born at 26 weeks. “Support organizations such as Hand to Hold can really prop up a family through challenging times. I can honestly say that Hand to Hold was an amazing resource and source of guidance and strength. People who went before me were continually supportive and encouraging. Someone told me early on not to borrow trouble, to take things day by day, and to stay focused on the big picture. Very wise words and I have shared them with other moms and grandmas who had a NICU experience.”

Help Process Information Overload
In addition to providing emotional support, grandparents can also serve as an additional set of ears. Most NICU parents experience information overload. Add anxiety and fear into the mix, and information becomes even harder to process. In most hospitals, grandparents can join their child in the NICU for doctor consultations. If you are invited, go. Just remember that your primary role there is as an observer. While it is only natural to want to take control in what feels like an out-of-control situation, follow your child’s lead. As hard as it is, remind yourself that it is not your baby on the respirator and decisions are not yours to make – or even weigh in on – unless asked.

The greatest thing you can do for your child is offer comfort. As hard as it is to be “the rock,” your child needs to be allowed to unload all their fears and worries on you without judgment. At this moment they may not be in a position to comfort you in return. Be patient. “I just tried to reassure her and give her hope; she was so scared and it was hard being so far away from her,” said Sherry Fisher, Grandmother to Thurston born at 27 weeks gestation.

I will never forget the joy of watching my dad hold my son for the first time. He had been so strong and brave – a quiet source of energy and hope for me during a very dark and difficult time. All his worry and anguish just seemed to melt away when he rocked Jackson that first time. Most hospitals encourage grandparents to participate as much as possible in the care of their grandchild. As overwhelming as the tubes, IV’s and monitors can be and as fragile as our babies are, like any other infant, our babies need physical contact and will respond to the sound of a familiar voice and the comfort of their grandparent’s warm, loving touch.

Kelli Kelley is the founder and executive director of Hand to Hold. She is the mother of two preemies, Jackson born at 24 weeks and Lauren born at 34 weeks.

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Comments

  1. Gay Molise says:

    This is so cool, great article, and I love that something I contributed was included. Hope it helps someone else who is struggling with how to help their child through this kind of experience. Thanks for all you do! You are an amazing resource.

  2. Sharon Ericson says:

    This is a great site. My daughter is owner of Rest In Hope. We both make small hats for the amazing little ones. Check out Bailey’s Bonnets.
    Watching my daughter sit on the sidelines while Bailey was in the NICU was so hard for me. She was so ill that she had to stay in bed. And the times she could get to the NICU to see Bailey something was happening in one of the pods and she could not go in. This was the hardest thing I have ever done in my life, and I’ve done some pretty hard things. But I took Bailey and rocked her, spent her last hours with her, Talked to her, told her stories. And loved every minute with her. I think of her daily now and on her birthday think what we could be doing to spoil her just a little more. She would be a sweet sixteen this past Oct. and I know we would be out having a great time. I just know I will hold her again someday and she will help me through. Love you Bailey Noel.

  3. I remember the day my dad, qouted here as Doug Bennett but “Poppa” to me, said he wished he could fix it all for me. “It all” was my son’s incredible struggle to survive after being born at home at only 24 weeks gestation. I wished, too, that he could. And though he couldn’t, I never would have survived those 5 long months in the NICU or the years since without his support!

  4. Susan Hundley says:

    Thank you for including grandparents in the NICU experience. My twin granddaughters were born 5 weeks ago today at 26 gestational weeks. I think I have been afraid to “exhale” nevertheless acknowledge my true feelings. My daughter & Son-inlaw are amazing first time parents & the babies are true miracles. Yet, I am walking a path of so many emotions -fear, concern, love, hope, helplessness… Does it get better with time? Will I ever get to “exhale” and most importantly -what should I be doing to help my daughter & Son-in-law and of course my new granddaughters?

  5. What a nice post. We were lucky to have my parents to lean on during everything that we have been through this past year. Being there to support your child as a sounding board is so needed, actually just being there is great. Our daughter’s other set of grandparents who live about 15 minutes from us just can’t handle the stress so they have never been there in the hospital or at home.

  6. After 96 days in the NICU, my twin 26 week granddaughters came home January 10th 2014. While I am fortunate to be part of their lives every day, I am still so concerned. My daughter & Son-in-law are amazing & have made sure the babies are getting all the help needed. So, while I know everything that the babies need to become strong, healthy little girls, is being done I still worry. My concerns are not just for my granddaughters, but also my daughter& Son-in-law. In fact I think we are all experiencing PTSS, from the early labor, birth, NICU & now caring for two fragile babies. It is so hard to not think about what the babies have been through ( & their parents ) & also not worry about each day. I know we need patience & gratitude, but how do we not worry ? How do we not remember all they have been through, the close calls when the outcome could have been different? Few grandparents I know understand what I am feeling. The most common response I get is it is in God’s hands. I believe that. I just wish I had someone who understood to share my feelings with…

  7. Hi Susan,
    Yes, having babies in the NICU is hard for the entire family, including grandparents. I think it is normal to worry and feel a whole rollercoaster of emotions, probably not so different from the feelings your daughter and son-in-law are experiencing. I have forwarded your note on to one of our family support navigators who will be reaching out to you to see if you would have any interest in being matched with a fellow NICU grandparent so you would have someone who understands where you are coming from. I know my mom and my mother-in-law sought the same kind of understanding.
    Best,
    Amy Carr
    amy [at] handtohold [dot] org

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