‘Come back to me, please. I love you.’ Her lips turned the darkest shade of blue. I was paralyzed.’: Mom mourns loss of baby girl, says rainbow baby ‘brings the sun back out for me’

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“‘My daughter Scarlett was and still is my everything. I loved and still love (although harder now) being a momma. From the first time I saw her face, I felt like I had found my purpose, now at this moment almost 2 weeks after she died, I feel purposeless. I am floating in this dark pool of grief and the future feels empty, scary and meaningless. I don’t know how to move forward and some days I don’t want to.’

I wrote this paragraph February 5th, 2018. My daughter had just died unexpectedly, and I was completely lost.

Close up of smiling baby girl before she passed away

Scarlett was born October 18, 2016. I was surrounded by loving family members as I pushed her into this world, and as the nurse placed her into my arms. I felt so whole and complete. During her short life of 15 months and 6 days, she was able to teach me more about myself than anyone I have ever met. She taught me how to love endlessly, how to cultivate patience from thin air, and how to hold space for not only a tiny human being, but for myself as well. She herself loved so endlessly and so deeply. She was full to the brim with happiness and loved meeting new people and those people would fall in love with her right away. She was the most determined little human I have ever met and if she didn’t want to do something, she would absolutely not do it, but would return to her joyous, happy self when she got what she wanted. She loved books, animals, and other babies. I could write 100 pages of things, people and, activities she liked. I just love her so, so much. She was the brightest part of my life and even after death, she still is. She was a healthy baby, she got the occasional cold, but she was healthy, until all of a sudden, she wasn’t.

Husband and wife smile as they hold their baby girl before she passed away

On January 21, 2018, at 5:00 a.m., my husband and I took Scarlett to the ER with a fever of 103.3. She woke up vomiting and we jumped into action thinking they would send us right home. That she was going to be fine. Well, her fever went up to 104.8 and we were admitted to the children’s hospital in town. As soon as we walked into the hospital the heaviest feeling of dread came over me. I was scared right down to my bones. She had stopped eating and nursing, so they started an IV for fluids, and her fever came down and we thought we were on the up’s. Then Scarlett started having trouble breathing after a day and a half in the hospital, and from there it was a quick slide down. They intubated her at bedside, placed an Intraosseous infusion (IO) in front of us and the doctor called out to the 8 people in the room that just in the few minutes they were getting set up, Scarlett had gotten a lot sicker. Her blood pressure tanked so badly they could not get a reading and her O2 saturation fell to 8%. Normal is 100%-95%. As a nurse and as a mother, watching this happen in front of my eyes, I was completely devastated and paralyzed.

We were transferred to the PICU where they attempted to vent her, but they were unsuccessful. Her lungs were filled with fluid, they needed to put her on life support. It took 1 hour for them to do the surgery for life support. I was on my knees praying to God save my baby. They came out to tell us that it was successful, however she had coded for 4 minutes during the surgery. Her heart stopped for 4 minutes, they did CPR on my baby for 4 minutes. But she was alive.

Baby girl smiles as she sits in crib at home before she passed away

More bad news, after bad news. They found a brain bleed and no brain function left. Then her life support started to fail, so another surgery to place new cannulas in her left ventricle was needed. They opened her chest cavity to place these, and because she was so small, they could not close it up all of the way. No mother should ever have to see their babies open chest cavity. Then this method of life support started to fail, and the doctors told us on January 24, 2018, they did not think Scarlett was going to get better. They sat us down and told us step by step how they were going to turn off her life support so she could die, peacefully in our arms. The memory of her lips turning the darkest shade of blue as I held her and wailed at the top of my lungs will never leave me. My daughter died in my arms as I sang ‘You are my Sunshine.’

I had to find a way to survive. I was so lost, so I started to write a blog. I wanted to be able to turn my grief into something I could recognize. Like this post from February 7th, 2018:

‘Some days I try to get the house back in order. Then I pick up a stray pink, striped sock from under the couch. Suddenly I can’t move, I can’t breathe, and sink down to my knees and  I cry so violently it shakes my body. I try to smell her on the sock, I hold it to my heart and scream, ‘COME BACK TO ME! I LOVE YOU! PLEASE!’ I find myself softly chanting ‘daughter, daughter, daughter’ over and over and I lose count as I hold that sock and rock it. Minutes pass, I don’t know how many. Then quiet will come back to me. I will finally feel strength to pick myself up off the floor and I put her sock in her bedroom on her bed. I shut the door. I stand there for a moment, my hand still clutching the doorknob as tears stream down my face, as I look around my house. I feel lost in this space, I don’t know what to do next. The future is a language I can’t speak. I think this, still holding onto the doorknob. That even as I let go, I walk to make myself a cup of tea, it is all foreign to me. These movements my body has memorized – they are so strange to me. I can’t speak the future because the pain of right now is too great, but I find myself in the future with each passing moment, not knowing how I got there.’

Baby girl smiling as she lays on her back on blanket that indicates that she is 10 months

It took some time but I found the only thing that helped my grief was gratitude. I kept thinking how grateful I was that she was my daughter, that she made me a mother, that even though she was not with us anymore I had 15 wonderful months with her. To be clear, gratitude did not fix or cure my grief, nothing can or will. Grief is love with nowhere to go, and love does not need to be fixed. Gratitude made living without her just barely doable. And now here we are, a little over a year without her. 386 days to be exact. I wouldn’t say we ‘moved on’ because we would never leave her behind, but we carry on and we carry her with us. As I type this, I am holding my rainbow baby, Scarlett’s little brother. I have found that through this baby I feel closer to Scarlett.

Mother smiles in hospital bed holding newborn as husband stands beside her after losing first born

Again my grief isn’t ‘cured.’ My grief is very much still there but it isn’t as painful, it’s not as sharp, it doesn’t physically hurt when I think of her. I’m sure this is just a calm in the storm of grief. Grief always finds a way to sneak in your day, but this baby boy brought the sun back out for me. We will continue to spread our daughter’s joy and happiness with everyone we meet.”

Mother smiles as she holds newborn in one arms and picture frame of deceased new born in other
Elizabeth Marie Photography

This story was submitted to Love What Matters by Anna-Marie Elizabeth Jenks of Grand Rapids, Michigan. You can follow her journey on Instagram. Be sure to subscribe to our free email newsletterer for our best stories.

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