Every family has a story. In our line of work, we hear many of hope, heartache, joy, and courage. I personally often wonder how it will all work out for the families we encounter. This week, those thoughts led me to ask Sue, the founder of Jacqui's Preemie Pride, more about how she has made sense of her experience with premature birth as the years have passed. Her answers shed light on the reality that premature birth experiences are life-changing in so many ways that mothers and fathers are unprepared for. We hope Sue's story might provide comfort, understanding, and encouragement to others, wherever they are on the journey of healing from traumatic birth.

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What was the most challenging aspect of your NICU stay?

Not being with my children. Jacqui and I were in Georgetown Hospital for about six weeks. My placenta, liver, and kidneys had hemorrhaged, so I was in intensive care, and Jacqui was in the NICU. I didn't see her for two weeks. My son, Justin, was 18 months old and stayed with my sister's family. I saw him once during my hospital stay. I felt really isolated and very detached.

How did you cope with it?

I watched a lot of Sesame Street! It was my son's favorite show. Truthfully, I was so out of it most of the time I didn't realize where I was. As I started feeling better I wrote in journal. Mostly, I wrote to my children, describing my day, my love for them, and dreams and plans for the future.  

Did anything calm you, comfort you during that time?

I had a heating pad for my liver. It was a security blanket for me and I probably used it way longer than necessary. The nurses were wonderful; they brought me pictures and news about Jacqui every day. Once Jacqui was strong enough, they brought her into my room in her isolette. I couldn’t hold her but I could stroke her foot or hand. Also, knowing my son was being loved and taken care of was a huge comfort.

Is there anything you wish you had known then?

When you have a premature child, everything is unknown. Decoding the language of the medical team and the NICU terms was very disorienting. It was like wading through thick, thick fog. I wish I knew how it was going to play out, that we would survive, but I really can't imagine it being any different than it was.

Do you wish you had done anything differently?

Looking back, I wish I hadn't blamed myself so much. As mothers, our job is to take care of our children. Not being able to be with her while she was in the NICU was devastating. I now know how difficult it also is for parents who are with their baby in the NICU. Premature birth is just never easy, no matter the circumstances.

Did you approach raising a child with medical concerns differently than your other children?

I don't think so. I think each child got a different mother because we are all unique. Each of my kids has their strengths and challenges. I didn’t want Jacqui to be defined by her prematurity, so I tried to provide her with activities and social opportunities that played to her strengths and skills. She was an outgoing and confident kid, so I really don’t feel that she ever felt her prematurity held her back.

What advice do you give to new parents of preemies?

Preemies are very resilient. They are so strong and determined. Have faith in your abilities to care for them.

Jacqui is now in her early 30's. About 15 years ago, I was diagnosed with post-traumatic stress disorder. I had some therapy but didn't finish. I was so busy taking care of everyone else. But the effects of trauma like that may not just go away by themselves, no matter how much you wish them away. A few weeks ago a doctor said to me, "Have you ever been diagnosed with PTSD?" It's still something I live with. I would say to any new parent - take time to be kind to yourself. Having a preemie or a baby in the NICU is a traumatic experience, and acknowledging that is an important step towards healing.

What do you enjoy most about your work now?

I am so thankful that we have been able to keep our business growing. I love being part of a preemie's journey and getting to know their families through photos, phone calls, and emails. I work with my husband, which is a blessing, trying to make other people's lives a little easier.

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