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Letting their steps lead the way

A NICU mom shares her story

renagrosser image
The author, her husband, and three children today.

" We're all getting stronger each day.

My husband Zach and I struggled to visualize what life would look like after giving birth to 25-weekers. Since the beginning of Lily and Kaya's lives, we prepared for the unpredictable.

At my first sonogram, the doctor said enthusiastically, "Looks like we've got two heartbeats!" At 34 years old and without any history of twins, I was shocked. But Zach and I were excited for twins arriving in the summer, sisters for our three-year-old son Wes. 

I soon learned that our wave of feeling overjoyed would be filled with fear and anxiety as I became a "high-risk pregnancy." We had mono di twins, which meant they were growing in different sacs but shared the same placenta. By week 16, I developed twin-to-twin transfusion syndrome.

Every morning, I found myself desperately talking to my girls and my body, praying for health and strength as I would recite the morning prayer of Modeh Ani

At week 22 of my pregnancy, the girls and I went in to have laser surgery to treat the syndrome. I was put on leave from teaching to be on bed rest for the remainder of my pregnancy. 

At exactly 25 weeks-on Zach's 35th birthday-I felt contractions that came on strong and fast and we rushed to the hospital. A nurse took one look at me and said the girls were coming tonight. 

Shortly after midnight on April 4th, 2019, Lily Flo and Kaya Eve entered our world forever. We looked at them deeply but briefly, and then they were placed in incubators, attached to ventilators, wires, tubes, and monitors while being transferred to the Neonatal Intensive Care Unit (NICU). It would be weeks before we held them again.

Our lives changed from that day forward. Our first weekend was spent in the hospital close to our girls. We celebrated their birth and Zach read Torah and called out their Hebrew names for the first time. Our girls, Golda Esther and Chana Hadassah, are true queens of the same embodiment. Their strength will always be to overcome the odds triumphantly.

As our hospital stay continued, I searched for my own strength and peace of mind. I reconnected with my prayers, befriended other NICU moms, and explored creative outlets. Zach anchored me when I needed it, and I provided the support he needed when he was feeling lost. I had placed my career on hold, and our girls' growth became my daily purpose. 

Weeks turned into months, and seasons were viewed through the hospital windows. Kaya and Lily were teaching us a new catchphrase: "Take two steps forward and one step back." We let their steps lead the way and remained optimistic. 

151 days. After blood transfusions, intubations, medications, respiratory consults, NG tubes, therapy sessions, and more, Kaya and Lily were coming home. On September 2nd, Wes finally met his baby sisters. He waited the longest and was the strongest of our entire family. 

Today, Zach and I stay present and savor every memory of each chapter: Twice the diaper change, twice the bottle cleaning, twice the crying-we love it all. Time is fleeting, and our daughters' journeys have reminded us what matters most. We will always be grateful for Ann & Robert H. Lurie Children's Hospital of Chicago, family, and prayer that saved our girls. 

Last month, we celebrated Lily and Kaya's second birthday. Lily is loud and confident. Kaya, sweet and silly. They balance each other. We never can predict tomorrow, but my tagline of "We're all getting stronger each day" during our life in the NICU provides the balance I need for a healthy mind and family. 

Rena Grosser-mother of three-is an Early Childhood Educator at Bernard Zell Anshe Emet Day School and has a background in Art Therapy. 

 



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