My daughter, Esme Grace Emily Williams, was born on February 1, 2019. Her gestational age was only 24 weeks and 5 days, weighing just 1 lb. 10 oz.
Nearly 2 weeks prior to her birth I began leaking amniotic fluid. I was immediately hospitalized, monitored closely and told that she would come early. For anybody in this situation, it is scary, nerve-racking even. For me, it caused great anxiety and panic. We had already had a baby born prematurely and were taking extra precautions to ensure that we did not have a premature baby this time. Surely, this wouldn’t happen to me twice, right?!
Three years prior our son, Jeremiah, was born at 28 weeks and spent 69 days in the NICU. That was, without a doubt, the hardest period of my life, and I struggled an immeasurable amount to mentally heal from the trauma that having a premature baby in the NICU caused me. Truthfully, I did not know if I could survive going through that again. But I was being told by the doctors that the very latest that they would let me advance in pregnancy was 34 weeks. I was terrified, not only for my baby’s health, but I was afraid for my own mental health as well.
This time though, I thankfully had Love for Lily and their Facebook group for NICU Moms. I immediately turned to that community of NICU moms and told them of my situation. The outpouring of support and love that these mamas showed me was incredible, I felt uplifted and seen. There are so few people in our lives who truly understand the NICU life and what it does to a mother’s heart; so when a mom needs support, these women step up for her. Between the Facebook group and the virtual support groups I have seen these moms give to each other generously, gifting countless baby items (especially items that are unique to preemies), giving recommendations for special clinics, sharing ideas for celebrating a baby’s 1st birthday or coming home anniversary (both are huge milestones for a NICU family). Moms share their experience, so that the new mom in the same situation does not feel so alone as she navigates this new and emotional course that life has presented. We have shared our innermost feelings that only other NICU parents relate to. We have leaned on each other. We have mourned together. We have celebrated milestones together. We have journeyed and grown together. We have lifted up and loved one another. And when we finally meet in person, the hug that is exchanged, carries all the words that we can never say out loud, because sometimes only the heart can truly understand. I have laughed with these women, I have cried with these women. I am grateful beyond words for each of these moms and their willingness to travel with me on this journey and share their experiences. I do believe that these women are what made the difference for me on this 2nd NICU journey, they are what I needed to survive doing this again.
Late on February 1, 2019, my daughter was born via crash c-section due to an unforeseen emergency. I remember waking up from the anesthesia, my throat so dry that I could hardly speak, and choking out the words, “Is my baby alive??” That was the most terrifying moment of my life.
She was alive, all 1 pound and 10 ounces of her.
Her first 6 weeks were distressing. There were always doctors and nurses at her bedside. My daughter was the most critical case in the NICU at that time. I was told more than once to “prepare myself, just in case.” How does one prepare for that?
I thought about Lily and her mother, Sahra, a lot in those days. Lily, who Love for Lily is named for, was also born at 24 weeks and she also weighed 1 lb. 10 oz., so I was not naive to the fragility of life when babies are born this tiny. To say that I felt Lily with us sounds fanciful, but I felt a connection as I talked to Lily and asked her to watch over my little girl. I know that Lily’s life has been a gift and I am grateful to my very core for her mama who has given so much back to our community of NICU moms.
I did not get to hold my daughter for 10 days, instead, I would stand at the isolette staring at her, only allowed to put my hand in to touch her. Her eyes were still fused shut and her skin could barely be called skin at all. In the days following her birth she lost weight and was so scrawny that her rib cage stood out predominantly. After several days of weight loss, there was a difficult conversation that took place about the seriousness of the situation and she was given her first blood transfusion. I am still amazed at NICU nurses who can get an IV into these tiny little veins.
It is hard as a parent to stand back and watch as your baby has any type of procedure, whether it is for a common IV or a complicated surgery. Seeing your baby in pain, not having any control over it, having to rely on the nurses and doctors while you stand by helplessly… words cannot express the emotions that spread through you.
By the time she was 8 weeks old we were ahead of the hardest parts, we knew she would survive, and she was no longer the most critical baby in the unit. We still had a long way to go, but at least we were headed in the right direction. It is frequently said that the NICU journey is like a roller coaster, so many ups and downs, and sometimes you’re going backwards. We definitely experienced this roller coaster during Esme Grace’s NICU stay; she would get better and then get sick again and then get better again… and then sick again. Once she overcame one thing or reached a milestone, there would be another obstacle to tackle.
There were so many hard days, mentally and emotionally. Saying goodbye to her everyday felt impossible each time, and yet it was necessary so I could pick up my 8-year-old from school. My husband and I were blessed to be able to visit our daughter daily. The downside of this was that my 3-year-old son had to basically live with my mom during the week, because siblings were not allowed in the NICU during cold and flu season. I felt torn, like I had to choose between my children; if I kept my 3-year-old home with us then I couldn’t go to my daughter daily. It felt impossible to balance home life with NICU life, and it affected the whole family.
I cried a lot during this time, usually by myself and frequently while sitting in my car after leaving my daughter. I cried at night. I cried when my family would be together, without my daughter. I cried when I saw very pregnant women who were able to carry their babies full term. I cried when people asked, “when will you be able to bring her home?” I cried when I would video chat with my 3-year-old, and I would show him his sister who he said lived in a plastic box.
Sometimes though, I cried happy tears, like the first time I held her, and again when she opened one of her eyes for the first time in response to hearing my voice. I cried happy tears when she wore clothes for the first time. I cried from happiness the first time that I was able to nurse her. And joy leaked out in the form of tears the first time that her brothers met and held her; what a precious moment! And then there was the day that we were told that we could finally take her home, 145 days later, there were so many happy tears that day.
I like to remember that even though the NICU is a dark place, it also gives us moments of light. The NICU is where I fell in love with my baby girl, where we cuddled. It’s where she learned that Mommy is her safe place and steadfast and will always come back to her. This is also where I learned how strong I could be.
NICU parents need a safe place where they can process emotions, and Love for Lily provides that. I joined their virtual meetings from my daughter’s bedside and knew I was not on this journey alone. They taught me techniques to breathe and ground myself when emotions started to bubble up. They validated my feelings. They listened.
Without the woman who give their hearts and time to Love for Lily, I would be a different person. I leaned on them when I thought I was not strong enough, and they showed me that I was. Their love and fortitude led the way for me.
Esme Grace is now 3 years old, and she’s thriving. I look at her now, as she runs around chasing her brothers and laughing, and it’s hard to believe that she was ever so tiny and fragile. She still has some indicators of her premature birth, like her weakened immune system and her feeding tube that she was discharged from the NICU with, through which she still gets the majority of her nutrition. We worked hard with her occupational therapist to get her caught up to where she is now, and when the world looks at her they just see a 3 year old girl who is happy, healthy and giggling her way through life. She has a strength and feistiness about her, and I remind myself often that it is her feisty spirit that got her through those first months of her life and brought her to where she is today. She kept fighting and pushing through. And so did I.
Sherrilyn Kenyon wrote, “Strength through adversity. The strongest steel is forged by the hottest fires. It is pounded and struck repeatedly… The fire gives it power and flexibility, and the blows give it strength. Those two things make it able to withstand every battle…”
The NICU is the hottest fire, and us moms are the strongest steel.
Love for Lily has fiercely stood by me through the battles, and for them I am eternally grateful.
