September is NICU Awareness Month, a time to recognize the babies, families, and care teams whose lives are shaped by their experiences in the neonatal intensive care unit. On September 26, NICU Remembrance Day, we pause to honor the babies who died in the NICU and the families who carry their memory every day.
For many families affected by HIE, the NICU is where their child's story begins and is a place of both hope and heartbreak. For some, it is the only place they ever knew their baby. That time may be measured in hours, days, weeks, or months. It often holds love and loss side by side: a first hold, a sibling's lullaby, a nurse's small kindness, and decisions made with the deepest love and care. For bereaved families, these memories are held especially close: treasured, even when they are painful.
These babies' lives were short, and their parents' love for them is lasting. Every memory these families share is part of how their children continue to be known and remembered.
This year, two mothers in our community shared their daughters with us. In their own words, Michelle and Hannah tell us who Elianna and Kayleigh are, what they carry with them from the NICU, and how they keep their daughters close.
Our NICU Experience:
My daughter was alive for three weeks. Unfortunately, I was never able to see her eyes open or see her move. I would always see her in her little NICU bed. The moments I loved with my Elianna were being able to hold her. Hours would pass so fast when I was with her. She was 9 pounds, a heavy little girl, and I would leave the hospital happy that I spent my time holding her. I miss that so much.
Seeing my son be with his baby sister was the most beautiful thing I could witness: how gentle he was with her, the many kisses she received. He sang her a lullaby exactly how the brothers in The Boss Baby do for each other, and that's a memory I will carry with me forever.
The challenges were the "wait and see." Since day one, we knew things could go good or bad, but we never lost faith, even until her last week, when we knew it was time to let her go. All the NICU nurses were so nice. I was able to do so many cute things. They treated her with so much love. They called her Sleeping Beauty, and as much as I wanted her to wake up, unfortunately it wasn't possible.
Another challenge was discovering what HIE was and how much we needed to learn about it. And then getting to those final days of her life: accepting that they had done everything they possibly could, and that it was now up to us as parents to decide whether to keep her alive because we were not ready, or to let her go so she could go in peace.
My daughter left on a Saturday. We decided to remove her from life support during the sunset, at exactly 7:30 p.m. During her last moments, all of her nurses began making ornaments of her feet and hands and taking pictures of her, making sure I had everything of hers to keep. To this day, I'm eternally grateful for the NICU team at Texas Children's Hospital. They would cheer me on to never give up on her and to fight to her very last breath, and I did. They gave me so much hope and peace. I will always carry all of their names in my heart.
Message of Remembrance and Hope:
Elianna was the calmest and kindest soul. I carried her for nine months and she never gave me any pain, never complained about wanting to come out. She was so sweet. She only loved chocolate during the pregnancy, anything sweet. In the three weeks she was with us, of course she wasn't able to respond or do anything, but you felt so much love from her. She was silly sometimes, because her heart rate would go up every time she heard her dad and grandma. Elianna was kind and gentle.
In Honor of Elianna:
It will never be easy, and you will ask why. Even just a month since she's been gone, I am still trying to find my peace to deal with this grief. HIE has shown me what patience is, because that's all I had with my daughter: "wait and see." It wasn't the outcome I would have wanted, but I am at peace that my daughter isn't suffering anymore.
As a mom who went through postpartum without my daughter, it's the most heartbreaking experience I never thought I would go through. Still, right now, seeing a baby, seeing baby clothes, seeing siblings together breaks my heart, thinking of what could have been.
I'm currently learning a new hobby, sewing, and I pray and hope I am able to start my small business in her honor to help parents on the same journey.
No words will ever change how you feel. It's the Bible verse my daughter had on her NICU bed, and I still carry it with me to this day. Since my daughter wasn't able to open her eyes, I feel like it's meant for us, because we never know what's waiting for us. But always have faith in the darkest days. "For we walk by faith, not by sight."
Our NICU Experience:
Although our NICU experience was completely unplanned and the situation surrounding our daughter's death was less than ideal, the NICU staff nurses, doctors, and social worker team made our experience unforgettable. We were so thankful for the love and support we received while our daughter was in the NICU, as well as in the days and weeks after her passing. The kindness we experienced from the team at UF will forever live in our hearts. They celebrated wins with us and cried with us.
The unit our daughter was in is called the Hummingbird Unit, and it is decorated with hummingbirds. Now we cannot see a hummingbird without thinking of our daughter.
Message of Remembrance and Hope:
Our story did not go according to our plans. We had hopes and dreams of raising our daughter.
We know our daughter is safe in heaven and we will see her again one day. Until we meet her again, we carry her in our hearts. Her story is important, and she is still so loved. Her life on earth was short, but her story lives on through us every day.
In Honor of Kayleigh:
Each year we celebrate our daughter's birthday to remember her and keep her memory alive. I also use a bouquet of flowers with a keepsake pin and photo of our daughter when taking mommy-and-me photos. It's something we have done every year at Mother's Day since her passing. It's another way to include her, even though she's not physically present.
We take peace and comfort in our relationship with Jesus. Sometimes we have to take things minute by minute, and some days are harder than others. We love our daughter, Kayleigh, more than we could ever describe.
You can experience both joy and sorrow while grieving. Both feelings are valid, and both are real.
To Michelle, Hannah, and every family remembering a baby today: thank you for sharing your babies and journies with us. Their lives matter, and they remain part of this community.
If you are grieving a baby who died following HIE, you do not have to carry it alone. Hope for HIE offers a monthly Loss Support group, one-on-one support from our social worker, Jen Schaefer, and grief support from Annie Gunning, our Certified Child Life Specialist and Grief Counselor. You can also join our Loss Support for Parents Facebook group or visit our In Remembrance page for resources for bereaved families.
We are here for you now and in the months and years ahead.
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