Rachel Pasquale gave birth to a 23-weeker, Isabella, who is now 2 years old and doing amazing – but as anyone who has ever dealt with prematurity knows, the road to amazing outcomes is often bumpy and frightening. Pasquale describes having a baby so early and then coping with the ups and downs of the NICU as the most emotionally challenging event in her and her husband’s lives, and she has graciously shared her story with us. Stories of hope, she told us, were difficult to find during her family’s prematurity journey and she would have loved to have been able to read about other’s families experiences. Our hope and hers is that stories like that which follows will give new parents of preemies confidence and courage in the NICU and beyond. Here is Pasquale’s story in her own words:
I married my husband in September of 2004 after 10 years of living together, and we had our fair share of life trials during our relationship – which probably prepared us to handle the challenges of prematurity. I am now 37 years old but at the time of my pregnancy I had just turned the dreaded 35 years old and of course was deemed “advanced maternal age”. But we were, and are, lucky that nearly all of our extended family lives within an hour of us. What a blessing it was to have our family so close during our long four months in the hospital.
Our daughter’s prematurity was both expected and unexpected, in that the doctors anticipated her early birth but I thought I was going to defy all the odds and become a medical marvel. The first half of my pregnancy was uncomfortable but relatively normal outside of the uterine fibroids that meant more frequent ultrasounds. Everything was great, actually, until my 20 week anatomy scan. After an hour-long viewing of our sweet baby girl we were happy to hear she looked perfect, but what followed was frightening. My cervix was short, measuring 1.7cm with some funneling. I had no idea what that meant, and my doctor explained that the cervix can be dynamic. Measurements can change, so modified bed rest was prescribed, along with a follow-up ultrasound.
It may have been denial that made me go alone to that ultrasound when my husband had accompanied me to every previous appointment. I really thought they’d say everything was fine, but unfortunately things were anything but. I remember lying back. I remember the sonographer asking me to insert the wand. I remember her gasp and how quickly she grabbed it from my hand. I remember the tears that slowly seeped from my eyes and the fear running so deep through my body it was paralyzing. I began to shake; my hands were sweaty. And I remember bargaining with God. Please let everything be ok… please let me keep this baby. I’ll do anything…
At that scan, I was 20w5d and 1-2cm dilated / 80% effaced. The next 19 days of my pregnancy were spent in the hospital – most of those days on magnesium, some of them in the trendelenberg position, and the last eight days in labor and delivery because they thought for sure Isabella could come at any moment. Miraculously, I made it to 23w3d, which is just enough time to receive the benefit of steroid injections. Isabella, who was breech, was born via a classical C-section weighing 620 grams on May 2, 2010.
Like I said, I thought I was going to be different. Despite what the doctors were saying, I really thought I was going to make it full term. There was no way I couldn’t. I was healthy and strong and had never been sick a day in my life. Yet here Isabella was and I was an emotional wreck. So I didn’t handle things well. In the early days I could barely go into her room. Sadly, I stayed completely detached for the first few days. I was so afraid to love her, and even more afraid to lose her. I think I believed losing her would be less painful if I didn’t get to know her.
Looking back, this was clearly my way of handling the trauma of prematurity. I didn’t want to hear anything about how she was doing. Everything had to go through my husband first. I was petrified of touching her and didn’t want to take part in her care despite the encouragement from her nurses. I hated myself more than I can explain. I was angry at the world. And I was angrier at other moms who were nursing their newborns just one floor above where my baby was fighting for every breath. Worse, I blamed myself. Thankfully, my initial reaction only lasted a few days and as time passed, I became more involved.
Going through the motions of day to day life was helpful. I pumped every three hours. I went back to work five hours a day after Isabella was born. Work offered something consistent and predictable. I needed the distraction, and I think it really helped prevent me from slipping into a deep depression. On the flip side, more than two years after the fact, I harbor an enormous amount of guilt for “abandoning” my child in the hospital. Luckily, the support I received was amazing. For the first month, someone left us a dinner almost every day. That was the best thing ever! Friends and family were always visiting us in the NICU, sometimes joining us in the lounge for a meal.
Unfortunately, while I did find Graham’s Foundation well into our NICU stay, I didn’t connect with other NICU moms until well after Isabella’s discharge from the hospital. I really, really wished I had had access to a “graduate” NICU parent. While support from our family and friends was great, I knew they just didn’t get prematurity. friends and family was fantastic, I always knew on some level that they jOur NICU had private rooms, so even connecting with other parents in our hospital was challenging. Fortunately we did have a Family Support Specialist and she often organized workshops and events for the parents in the NICU. It was during these events that I finally felt comfort…mostly in the knowledge that I really wasn’t alone in the prematurity journey. Still, I wish I’d found more stories of hope. Our NICU was amazing, but didn’t offer anything in the way of tales of former NICU babies. How I would have loved to read about premature babies who made it through this journey… and even more to see what they were like years after their NICU experience.
Are You Interested in Sharing Your Prematurity Story?
We’re excited to start featuring profiles of preemie parents on our blog and to introduce you to some of the cool things our supporters are doing to help us help moms and dads of preemies. Would you like to share your story right here on our blog? It’s a simple way to show new parents of preemies that they are not alone in what they are experiencing and to give them hope. Email [email protected] for more details.