Rachel Pasquale gave birth to a 23-weeker, Isabella, who is now 2 years old and doing amazing. She shared her prematurity journey with us so that together, we could give other parents of preemies the kind of hope she wish she’d found in the NICU. Here is the second part of Pasquale’s story, in her own words, along with her advice for new moms and dads coping with the ups and downs of prematurity:
Four months after Isabella’s birth, I actually felt incredibly confident leaving the NICU, which was surprising considering how scared I was throughout the entire journey. I think what helped most was spending every single night at the hospital while Isabella was in the Continuing Care Nursery. That’s right – I slept in her room from July 6th until her discharge on August 17th! The doctors and nurses may have thought I was crazy, but I’m pretty sure other parents of preemies will understand why I did it. I am so grateful I had that opportunity available to me – I was lucky enough that I didn’t have other children to juggle at home, and I lived only 10 minutes away the hospital.
Being on the other side of the NICU has been amazing, and yet Isabella’s premature birth is still very much a part of my daily life to this day. Initially, I worried the most about her getting sick. Then I worried about her development…what was in store for us. Would she hit her milestones Would she beat the odds or become one of the statistics? With every new day came a new set of worries. Right away I took advantage of all the therapies that were available to us. I utilized my own private health insurance to pay for therapy visits and also accepted the free access we had to our state funded programs. I felt like the more eyes on her, the better. As time passed and I grew more confident that Isabella was doing ok, a desire began growing inside of me. I was thirsty for information on prematurity, and I scoured the web for stories and blogs about others who shared this journey. I was incredibly driven to connect with other parents who truly understood what it’s like to have a premature baby. I began volunteering in our NICU. And I’m still driven to reach out to new parents so I can offer them the kind of hope and encouragement I felt was so absent during my own journey.
To those parents I say, first and foremost, there is no right way to do the NICU. Whether you spend 20 hours a day or 2 hours a day with your baby… whether you pump every 3 hours or give up pumping after 3 days… whether you cry every hour or don’t cry at all… having a baby in the NICU is terrifying and traumatic. No matter how you handle things, you are exactly where you are supposed to be!
Second, as preemies take steps forward, they WILL take steps back. They might move to the nasal cannula for a few days (or even weeks) and then end up back on c-pap or the vent. Or they might be feeding really well only to have to have feeds stopped for one reason or another. It’s frustrating and it’s scary. Every time Isabella took a step backward I had an emotional meltdown! I thought for certain it was the beginning of the end, but it wasn’t.
And lastly, doctors and nurses in the NICU are somewhat immune to these fragile babies. Bagging a preemie baby is a regular and routine occurrence for them – so much so that they sometimes forget how traumatic it can be to watch as a parent. Don’t be afraid to let them know you need some compassion and understanding… and consider regular visits with the hospital social worker. They are available to you and that’s what they’re there for. Never be afraid to say you need help.
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 togive them hope. Email firstname.lastname@example.org for more details.