A Micro Preemie Journey: A Grandma’s Story

“Micro Preemie wasn’t part of our vocabulary.”  Admittedly, they were prepared for an earlier delivery, as is often the case for twins, and they even knew there was a chance of bed rest due to recent blood pressure increases but mostly on everyone’s mind at the regularly scheduled MFM visit at 23 weeks was that they were doubly excited for two girls.  All too quickly, the excitement shifted to fear.  The visit turned to an admittance due to preeclampsia diagnosis soon-turned HELLP syndrome.

For too many of ANRC’s readers, this shift from happy-go-lucky to heart-stopping fear is all too familiar.  However, this isn’t the story of the parents of the micro preemie.

This is the story of the grandparent.

Last month I had the pleasure of talking on the phone with one of ANRC’s regular readers, Marilyn, who agreed to share her story.  I asked her to share because prematurity doesn’t just emotionally impact the immediate family.  It also impacts the extended family and, often, most notably the grandparents.  I also asked Marilyn to share because, just like many people say to me, “I can’t imagine how you do it”.  I sometimes think that way about the grandparents’ version of this story.  Not only are they helpless to what’s happening to their grandchild.  The grandparent is also helpless to making it better for their own – adult – child.

Marilyn described it so well.  She happened to be with on that visit during the 23rd week that went horribly wrong.  She said, “I went into that mode – she’s scared.  As a mother, I was worried, but I had to stay calm.”  I haven’t met Marilyn in person, but I could tell from our phone conversation that she is a master of remaining calm on the surface.  At the same time, I could hear the fatigue in her voice as she shared that day with me.  “Indescribable,” was her word.  Sitting in that waiting room.  Making phone calls notifying friends and family of the turn of events.  HELLP is a very serious medical condition – Marilyn’s daughter’s life was in immediate risk.  At the same time her two granddaughters were coming into the world at just 23 weeks.  “You try to be happy and joyous, but at the same time, I have three loved ones in the ICU.”  Marilyn says she felt fear and anxiety more than immediate joy.

Unfortunately, on the same day when there should have been relief at her daughter’s recovery from HELLP and discharge from the ICU, one of the babies passed away.  “And then we were planning a funeral”.  The words Marilyn spoke were simple and straightforward.  However, the weight of them were enormous.  As I write this a month later, I can hear her say those words.  Her voice was even and clear, but I can feel the pain 1000 miles and a month away.

And just as suddenly, Marilyn’s tone changed, the pain was pushed aside and she was back to matter of fact.  There was still a surviving baby, who was only 15 oz at birth, and her grieving mother to worry about.  Marilyn didn’t have time to process what her family was going through.  She had to keep staying strong so she could help ease the burden.  Marilyn visited the hospital daily to support her daughter and also she helped with logistics to ease some of the pressure on the family.

After more than four months in the first NICU and failed extubation, the baby was transferred to a NICU 2 hours away where she stayed for another 5 months.  Marilyn’s daughter and husband needed to rely on her to manage more of their household needs.  She did the grocery shopping, took care of the cat and every night … waited for a phone call to hear how her daughter was doing.  Of course, Marilyn worried about her granddaughter, but she was also worried about her daughter.  She knew her daughter wasn’t eating or sleeping well.  The time away was especially hard on Marilyn, “[my daughter] was just recovering from this experience and I couldn’t be there to take care of her.”

As Marilyn described the helplessness of not being able to make things right for her daughter, I realized how much she truly understands the story of every preemie parent.  As parents we often feel like we’re supposed to come equipped with a magic power that makes everything okay in every situation.  When that ideal can’t be met, it’s excruciating.  We feel it as preemie parents and Marilyn proves it’s also felt as parents to preemie parents.

Also, like preemie parents, Marilyn admits that even though she has stayed strong to the outside world…and around her daughter… she reserves the right to meltdown with her husband.  Marilyn’s situation allows her to play a more physical role with helping her daughter, but she took special note that grandfathers are also deeply affected by the prematurity experience.  The emotional burden is shared by the entire family and Marilyn and her husband rely on each other as they both cope with that weight.

Now that her granddaughter has been home from the hospital for a year, Marilyn continues to play an active role in helping with day-to-day cares and errands.  At 19 months old, the baby has a trach and requires around the clock care.  When the nurse goes home, Marilyn does what she can to help.  With cold & flu season in full swing, Marilyn helps with grocery shopping and picking up medications at the pharmacy.  Things are improving, but there is still a lot of work to be done.

Marilyn’s pay off for the work that she’s done is the joy in watching her daughter love her own daughter.  Together they celebrate each milestone – signing “mommy” and “daddy”, knowing her body parts, cruising and walking with hand held assist.  Marilyn’s voice sang, as she talked about how well her granddaughter is doing.  While she admitted there is still crippling fears – especially tied to cold & flu season – she said she really tries to focus on how much fun her granddaughter is.

I love that the conclusion of our call was focused on the joys and loves of parenting and grandparenting.  Whether you’re parenting a typical child, a preemie or a parent of a preemie – it seems no matter how dark those darkest moments may be, it all comes back to joy and love.

Thank you, Marilyn and your family, for sharing your story.  You inspire me to be a better mom and to better appreciate our parents and all that they have done and felt through our own journey with prematurity.  I hope one day our paths will cross where I can give you a hug.   (Also, thank you for your patience as I took an unintended month off from blogging.)