Avery, 1 Month

Avery and Lily spent four months in the NICU and had a fairly “standard” NICU course, no surgeries or procedures, ROP that regressed on its own, PDAs that closed on their own, and no brain bleeds. Their feeding difficulties kept them in the hospital past their due date because they both severely aspirated during bottle and breast feeds. We were fortunate to be able to bring them home with NG tubes and apnea monitors which allowed us to work consistently with their oral feeding during the day. At night we would tube feed them whatever they needed to get the proper calories and nutrition to ensure they would continue to grow and develop. They had Early Intervention (physical therapy/feeding therapy & speech/occupational therapy) and we added Play Therapy from a local resource in our area that would bring developmentally appropriate toys (based on our EI goals) each month. This was a wonderful break for all of us from all the “therapy” because it allowed us to just play with the girls, to enjoy them and not always be working towards a skill or milestone.

Lily, 1st Week

For five and a half months Avery and Lily were at home while we waited for Zoe to get strong enough to join her sisters. Zoe required oxygen for quite some time which kept her in the hospital until she was able to wean down to 1/2L on her cannula, which was a “safe” O2 amount for us to manage at home. When she was nine and half months old we finally got that wheelchair ride out of the NICU!

Having all three of our daughters under our roof was all I had been dreaming of since the day I learned we were having multiples. It was our season of controlled chaos. Controlled because everyone was on a schedule for feeding, medications, therapies, and appointments. Chaotic because we had three babies! By the time Zoe came home Avery and Lily no longer required their NG tubes or apnea monitors. Zoe on the other hand had her cannula, a g-tube for her feeds (she did not eat by mouth at all), and hearing aids because she had profound hearing loss.

Zoe, 2 days old

Unfortunately, Zoe’s time at home was short lived. She was rehospitalized four months after being discharged because of flu and pneumonia and then died suddenly when she contracted a secondary infection. We were devastated. We could not imagine life without all three of our girls together. I fell into a deep depression and required intensive therapy and medication. About 3 years later I would be diagnosed with major depression, generalized anxiety, and Post Traumatic Stress Disorder (PTSD). Getting that PTSD diagnosis was the best thing that could have happened because it led me to a psychiatrist who specialized in PTSD.

It has been almost eight years since Zoe died. Avery and Lily are very happy, healthy third graders who love to play, ride their scooters, draw, and volunteer at the animal shelter. Lily has been diagnosed with Auditory Processing and Sensory Processing Disorder, which we have been able to manage with the help of a tutor and developmental pediatrician. She no longer requires OT but we do have to find creative, multi-sensory ways to help her learn and retain what she’s learning. Avery has no residual effects from being born almost 15 weeks too soon.

Avery, Lily & Zoe at Home

Zoe’s death led us to start a non-profit in her memory, the Zoe Rose Memorial Foundation. Through our foundation we offer peer support to families in the NICU and to those who have experienced a loss in a multiple birth. We also provide staff education and training for hospitals to enhance parent/provider communication. We also joined together with other like-minded veteran preemie parent advocates to form the Preemie Parent Alliance (PPA). PPA is a network of parent led organizations around the US. Each member organization offers support in some form to families who have critically ill babies in the NICU, post NICU or those who have lost a baby.

Avery & Lily Today

The last nine years have taught me many things and have placed me in some of the most terrifying situations I did not even know existed until I had preemies. I have grown stronger in my faith because in these situations, where my babies are fighting for their lives, I had no control. The only comfort I could find and have found is in knowing that something much greater than I is at work. I can only see the thread, but God sees the entire tapestry. Even in recovering from the grief of losing my daughter, I know that I am not alone. And I know that even when I was at my weakest, I had the support I needed from other parents of preemies to become empowered. Out of that empowerment grew hope. Hope carries me through each day. Even when life on Earth felt like a prison created by depression, a never-ending road of suffering, just a glimmer of hope that life would be fulfilling and joyful again has brought me to the other side.

Photo Credits:  Naomi Levit Photography