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

Is Your Grandchild in the NICU? Here’s How You Can Help

Nana holding my son Caleb for the first time.

Nana holding my son Caleb for the first time.

One of the hardest moments I experienced after the birth of my son was telling my parents that he was in the NICU (neonatal intensive care unit).  I will never forget the pain in their eyes.

The birth of a premature or sick baby is not merely stressful or difficult, it is traumatic.

Suddenly you find yourself on an emotional rollercoaster, even if the possibility of a NICU stay was known beforehand.  This is a tremendously difficult time for families, including grandparents.  Grandparents are not only concerned about the well-being of their grandchild, but also the well-being of their own child.  The NICU is an emotional experience as the baby’s condition may change daily, sometimes hourly, and the unexpected can happen. It is a difficult experience which may be compounded by a traumatic birth, high risk pregnancy, previous miscarriages, struggle with infertility, and/or complex family dynamics.

For the parents, their world has just been turned upside down.  The loss of control, uncertain future, pain of seeing their infant endure seemingly endless testing, and having to make crucial medical decisions while being bombarded with new, complex medical information- it is a nightmare.  It is only worsened by the separation from your baby, exhaustion, NICU visiting hours, recovering from birth, trying to bond with and care for your baby, taking care of your other children, supporting your significant other, figuring out how to financially afford it all, and oh yes- taking care of yourself.

No wonder NICU parents feel stress, fear, anxiety, helplessness, shame, self-blame, inadequate- vulnerable.  I did.  I reacted to those feelings by crying, not being able to eat or sleep, being irritable, distancing myself, numbing my emotions, and being controlling.  It is how I coped with feeling vulnerable and out of control.  We each cope differently and cycle through various behaviors that shield us from the lack of control, pain and vulnerability we are experiencing.  I was often harshest to those closest to me.  Other than my husband, our NICU experience was hardest on our parents.

Grandparents while concerned about how their son/daughter/other grandchildren are coping, may find themselves not knowing how to cope.  Falling apart in the NICU is not helpful and relying on the parents to comfort and support you only adds to their strain. Seek support from your close family and friends, church or clergy member, other NICU grandparents or online support groups.  Find the courage to be strong for the parents.  Acknowledge this is a hard, stressful, scary time.  Listen openly without judging, blaming, trying to fix the problem, being overly optimistic or offering advice unless asked (do not be offended if it is not taken).  Accept the unknown- they may not have answers or a prognosis, understand this is a journey, and be patient. Reassure them this is not their fault.  Respect the parents’ decisions- remember they are trying to do what they feel is best under very difficult circumstances.  Offer kind words of support, encouragement, and prayer.  It IS hard to support the parents- I know I was not easy- but I am beyond grateful my parents were there for me and continue to support me on this journey.

Ways a Grandparent Can Help Ease a NICU Stay

  •  Ask what you can do to help (grocery shopping, meals, cleaning, laundry, caring for pets, running errands).  Often parents are so overwhelmed that they do not know or are too tired to think about how you can help.  You can ask more directly such as, “Is there anything else you need from the grocery store?  I am going to pick up ______.”
  • Celebrate the birth in a way that is sensitive and appropriate for the NICU- check out Hand to Hold’s Pinterest page for ideas.  Remember to celebrate holidays, milestones, and special occasions, too.
  • Offer to help with other children.  Remember, they may feel out of control and react differently than expected to having a sibling in the NICU.  Be strong, patient, calm their fears, and remind them they are loved and cherished.
  • Visit the baby in NICU. Be respectful of the parents’ time with their baby- visiting hours are precious.  Be respectful of the rules and procedures in the NICU including not visiting when you may be sick, stringent hand washing, and being considerate of the environment, including other families.  The NICU can be shocking- familiarizing yourself with what you may see and what your grandchild may be experiencing can be helpful.
  • Bond with your grandchild. Touch (if allowed), read, sing, share family stories, and coo over your grandchild.
  • Remember your role and respect the parents’ decisions.  They may not want you at the bedside when the physicians are rounding, you may not be included when making medical decisions, or the staff may not have permission to share information with you.
  • Ask if they need help telling family members or updating family about the baby’s condition or progress. Be mindful to share only what you were asked to share with whom they asked you to share it with.  An online blog or Facebook page can be a helpful way to share information.
  • For those grandparents who cannot be there to help, gift cards (gas, restaurants, fast food, groceries), paying for a cleaning service, meal delivery, notes of support and encouragement, and being available to talk are all wonderful ways to help.

I hope this insight into the NICU and tips on how to help can make this difficult time is a little easier.  I encourage you to explore Hand to Hold’s helpful articles for more information regarding the NICU experience.

Bea Smith About Bea Smith

As a nurse, Bea Smith (TX) found the roles reversed when her son was born with a congenital condition, imperforate anus (IA); he had no anus. He had surgery at two days old, spent a week in the NICU and has had three more surgeries to create an anus and to correct his spine. Diagnosed with VACTERL, an association of conditions, he also has kidney/bladder problems and had a tethered spinal cord. Bea is the mother of two daughters in addition to her son. She is adjusting to her role as a rookie special needs mom, balancing family, friends and work with a little humor and a lot of faith, chronicling it all on Caring Bridge.

Comments

  1. Bea,
    Thank you for your beautiful article. This should be placed in NICUs around the country. I know you have just helped so many grandparents who feel helpless in this situation right now, and will help many more to come.

    With Love,
    Dawn

  2. Thank you for taking the time to write this. I am sure it has helped many and I wanted you to know that 2 years later you are still offering assistance to those who may need it. Your family looks beautiful and I hope you, your husband and all your children are doing well.

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