While Amanda Gruenberg’s daughter, Ella, fought for her life after being born 16 weeks premature, Amanda was fighting her own battles of guilt, sadness and uncertainty that can come with being a preemie mom.
Amanda’s sister-in-law, a friend of mine, messaged me to say that her niece would be born at 24 weeks. She wanted to know in what ways she could support her parents. I had several ideas, but was apprehensive to share them because I hadn’t yet met a mom of a 24-weeker. I knew she would have a long journey of touch-and-go days ahead. None of my normal advice seemed good enough. There was a book I knew she needed. I have a copy and loan it out whenever I can. Sometimes arming ourselves with information is the best way for a preemie mom to handle the unknown.
I’m so happy to say that Ella is a happy, healthy 18-month-old today and I’m grateful to her mom for sharing her story.
Get to know Amanda and her 98 day NICU journey with Ella.
Preemie Mom Story: Amanda Gruenberg
What were the circumstances surrounding Ella’s premature birth?
While I was pregnant with Ella I was teaching kindergarten full time and balancing work with visits to a high-risk doctor because of a thyroid condition and blood clotting condition. The doctor had me taking daily injections of Lovenox since I could not take my pill form of blood thinners. I saw the doctor four days before being admitted to the hospital and at that time, the only concern was growth restriction that they would continue to monitor.
The weekend after the appointment, I had an excruciating headache that would not go away. I went ahead and went to work on Monday, but left half way through the day because of a very high blood pressure reading, the top number was in the 200s. I was admitted to the hospital and stayed overnight for monitoring.
On Tuesday, test results showed that I was suffering from HELLP syndrome. I was given steroid shots for her lungs and put on a magnesium sulfate drip. The next few days are still a bit blurry. Friday morning, Ella was delivered by C-section.
What were the following days like?
The first time I saw her was Easter Sunday, 48 hours after she was born. I had been in bed due to my blood clotting issues and high blood pressure.
We had received a call in our room that we needed to go and see Ella because we needed to make some decisions. My husband, Ross, had been to see Ella several times since her birth, but I did not have a chance to tour the NICU before her birth so I was not sure what to expect.
That first trip to the NICU was one I will never forget. The ride in the wheelchair was painful, the halls stretched on forever. When we arrived at the NICU, Ross guided me through the process for entry: badge, hand-washing, straight to the room. I remember him helping me stand at the sink. I remember hearing one ding after another and shuffling footsteps.
When we arrived outside of her room, I kept my gaze at the ground. Someone was talking to Ross and as I brought my gaze upwards, I saw a huddle of nurses and doctors surrounding a plastic isolette. Tears fell swiftly down my face. The doctor said it would be best if we went elsewhere to talk. The doctor spoke to us in a calm yet concerned voice. Ella’s lungs were collapsing. A chest tube had been placed, but it did not seem to be helping. The next 24 hours she said would be crucial.
Then we went back to our baby’s room. Several nurses stood around her bedside. I was crying, shaking, and fearing the worst. Staring down, I quietly asked if I could touch her. A strong voice from one of the nurses responded, “Yes, mama, you can touch her.” I lifted my quivering hand up towards our tiny baby. I gently touched her and then pulled my hand away. We had created this precious life and seeing her in such pain was torturous. My head was throbbing, by body aching, and my heart shattering into a million pieces.
When did you get to hold Ella for the first time?
My first skin-to-skin time with Ella was at 30 days old. She had surgery for her patent ductus arteriosus, or PDA, a congenital heart defect, at three weeks old. She was on pain medications and steroids following the surgery and not in stable enough condition to be out yet. I did get to help bathe her before her surgery though.
Adjusting to NICU Life as a Preemie Mom
What was the most difficult part of having a baby born premature?
The most difficult part was sorting through the immense grief and guilt. I blamed myself for Ella’s early arrival. My husband and I were both grieving on our own terms, struggling with processing all that had happened. He had almost lost his wife; we had almost lost our baby. A baby we had been waiting for the past two years.
Ella’s birth, a moment that was supposed to be joyous, had been terrifying. I mourned the loss of a normal, full-term pregnancy and of not feeling joyful for my baby’s birth. I constantly reminded myself that I was still supposed to be pregnant. There was a lot of sadness. It took a long time for me to feel like I could take a deep breath.
What kinds of things did you do to feel more like a “regular” mom to Ella?
Once I was able to hold Ella and do kangaroo-care, I would hold her as long as she could tolerate it. In those precious moments, I felt the most like a regular mom. Helping with care times was also important.
What got you through the tough times?
Knowing that our friends, our family, and even people we did not know were praying for our feisty preemie brought me comfort. I would whisper to her often about how loved she was and how many people were praying for her.
The morning of Ella’s birth, I received a text message from the daughter of one of my co-workers. It read, “Good luck today! I do not understand all the mystery of grace, only that it meets us where we are but doesn’t leave us where it found us.” I reread that text often. For me, it was a reminder that we are always moving forward, that there is always more ahead, and most importantly that we are never alone.
During her NICU stay, I found a few quotes that brought comfort. Before her first big surgery, I wrote her a card and placed it on the shelf above her isolette. The front of the card read: great things take time. Another was on a magnet I found in the gift shop. It read, You Are Pure Potential. I placed the magnet on the fridge in her room. The last quote I loved I found in a coloring book a friend had gifted me. It said, Love Defies Expectations. I read all of those statements, day after day, deciding to make them our truth, Ella’s truth.
How was it relating to friends and family during your NICU stay?
This was a hard time for me in terms of friend and family relationships. I felt so loved and so alone all at the same time. It was hard for me to receive gifts for Ella in those early weeks. I could not stand the sight of any of it because it hurt too much to think about what we would do with it if we lost her. Now though, I cherish those gifts greatly.
I loved when friends would check in with me, but was always unsure of how much or how little to say. I started a weekly text message to friends that I called The Ella Update where I would share her progress and list specific prayer needs. The prayer needs often reflected the goals that were listed on the board in her room.
Another friend of mine offered to meet up at a park across from the hospital and take walks together. It was good for me to get out and get some fresh air, but still be close to Ella. Also knowing that everyone we knew and someone they knew were praying for our baby brought great comfort.
Did you go back to work during the three and a half months Ella was in NICU?
Yes. I returned to school six weeks after Ella was born and finished the last two weeks of school.
How did you balance work with Ella in NICU?
It helped that there were only two weeks left in the school year. I focused on the fact that by returning for those two weeks I would have more time with Ella once we brought her home. I am a routine oriented person so for me there was also a level of comfort to be back into some sense of normalcy. My boss and my work family were supportive and sensitive. They let me know they were there, but did not push me to talk about Ella. If for any reason I needed to leave quickly, I had coverage.
Was there anything anyone did for you that helped make the NICU stay easier?
Friends and family helping with meals was a great blessing. My best friend sent me a care package with a bag for our trips to the NICU, a binder to journal in, Germ-X, and some comfortable clothes. Each item had a tag attached to it with a special message. Her thoughtfulness made me feel very loved.
Encouragement to Other Preemie Moms
How is Ella today?
Ella is 19 months old. She is tiny, but ever so mighty. Her feisty personality that helped her survive the NICU remains. We are in awe of her strength. She smiles with her entire face and her giggles are contagious. She loves to spend time outside. We call her our curious observer. She brings us great joy.
What would you tell a mom who has a preemie baby in NICU right now?
To parents facing a NICU stay I would say cherish each moment you have with your precious miracle. Remind yourself that you and your love are everything your baby needs in this world. Decorate your baby’s room with photographs, quotes, and things that bring comfort and happiness. Hold your baby as often and as long as they will let you. Know that it is possible to grieve and celebrate simultaneously. Cry when you need to. Smile when you need to.
Remember that everyone copes in their own way, including your spouse. Give each other grace, often. Give yourself grace, too. Leave your NICU room and find a bit of yourself again. Find an outlet.
Know that few people outside of the NICU walls will understand the trial you are facing. They will do their best to show you empathy, but will never fully understand. Still, let them in. Let them love you and support you on your journey. You will need them. Listen to the words that speak life, repeat them often, and make them your truth.
Consider recording your feelings in a journal or a blog for an outlet and also to record your preemie’s milestones. Here is a sample blog post I wrote on my The Ella Update blog about our transition to a new normal at home after our extended NICU stay.
Remind yourself that every minute of every day there is opportunity for growth and success, even when the “odds” try to paint a different picture.
I always say preemie moms deserve a merit badge. What merit badges do you think you have earned?
Learning to speak in NICU terms definitely deserves a merit badge. Hauling around a Vera Bradley weekender tote full of monitors deserves a merit badge. Navigating parenthood as a first-time mom without any accurate age milestone markers deserves a merit badge. I always struggled determining if we were in a sleep regression, getting teeth, or if something was medically wrong.
I think all preemie moms deserve a merit badge for showing up and facing their worst fears each and every day. It doesn’t matter if you spend one day in the NICU or one year, the experience will never leave you.