“Skylar was my first baby. I was 24. She was born three months early. When I first saw her, I almost fell to my knees. She was in an incubator and on a high-frequency oscillating ventilator. It was such a shock, and I was in the thick of postpartum. There are many emotions involved, even if you have a full-term, healthy baby–this experience was horrifying. 

I had elevated blood pressure early during my pregnancy. One day, it was off the charts. I was then diagnosed with severe preeclampsia, my liver enzymes were elevated, and my platelet count was low. The doctors took Skylar early because her heart rate kept dropping. 

Twenty-Eight-week-ers normally do pretty well, but Skylar stayed in the NICU for 10 months because she had an undiagnosed Patent Ductus Arteriosus (PDA) opening between the two major blood vessels leading from the heart, leaving a hole in her heart. She had multiple surgeries and breathing was a challenge. The slightest cold put her back on the vent. 

Skylar saw every doctor and had every service imaginable, anything to get her healthy and off oxygen. But she caught a virus when she was a year and a half. She was then admitted to the PICU. Doctors put in a gastro-jejunal tube to feed her; it went past her stomach into her intestines, so she would not aspirate. They also paralyzed her so she wouldn’t extubate herself. One day, her stomach was swollen; the doctors told me it was constipation. But Skylar had a fever and looked gray. I saw a tear go down her face. They said that was normal, but it didn’t sit right with me because she was on a paralytic. An X-ray showed free air in her stomach, indicating a bowel perforation. They rushed her to surgery. Skylar was intubated for weeks and getting sicker; the gastrointestinal fluid was leaking throughout her body.  She was in pain this whole time but couldn’t scream or display signs of discomfort. This haunted me for years. 

I kept warning the doctors that something wasn’t right, asking them if they could do more. I knew my baby. After surgery, the doctor said that the intestines normally fall out when they normally open a stomach. Skylar’s were stuck because the infection was bad. Her stomach was so inflamed and swollen, they couldn’t close it. They washed out her stomach for a couple of weeks, but she was getting worse. This wasn’t humane for my daughter. I realized I couldn’t keep doing this to her just because I wanted to see her. She needed to be free and go to a loving place where she’s not sick or weighed down by physical limitations. We took her off life support. She passed away in my arms, turning still, stiff, and cold. But somehow it was still beautiful. That was the first time I lost someone close to me. 

My first steps were to sit in my grief and be patient with my feelings. There were times I didn’t want to be here. Grief doesn’t go away as time goes on, but it gets softer. It’s not so harsh and doesn’t take your breath away. I did therapy, hot yoga, and found inspiration from other people who’ve lost children. 

I thought about Skylar’s legacy and how she could still live. We started The Skylar Project.  I didn’t know how to start a non-profit or have a team or any wealthy friends who could write checks. Luckily, my husband could donate throughout the first and second year. We helped people with gas cards and had different events. I do a lot of work at the University of South Alabama and the University of Alabama Birmingham, providing resources for NICU and bereaved families. This year we were awarded a grant to provide financial assistance to families. We have helped by paying car notes and utilities or giving gas cards to NICU families. We provide bereavement and peer support. Art projects fill in the void of a sterile NICU. The  NICU reunion has been my favorite event so far. 

When you hear NICU, I want you to think of the postpartum mom who is going through the trauma of seeing her baby struggle and suffer. She’s vulnerable–like an exposed nerve. There was no extra help or support when I had Skylar. No extra ears to listen beyond my husband or family members. I want to be a champion for who I was back then.

It’s healing for me to help give what I needed and didn’t have, but the grief never goes away. Each holiday and birthday is a reminder of Skylar. But I also have two healthy children. My daughter is six–she’s a firecracker. My son will be two next month; he laughs like Skylar and has her dimples. That’s healing, too.

I want to expand these programs throughout Alabama. Hospitals and labor units are getting shut down, and the prematurity rate is increasing. Volunteers and donations are always welcome for The Skylar Project. We are helping other parents in their darkest chapters because we have been there.”

Toya

If you want to donate or volunteer, check out The Skylar Project website in the comments below.

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Toya’s story is part of The Weavers series. Stories about the people who stitch together the fabric of society while so many forces pull it apart. Who are the folks who make life a little better in your community? Send me their names and a little about them, and I’ll try to talk with them.

Lynn