June 2020 – preemiePRO Org Highlight

Penelope Project
Bryana Miranda
www.penelopeproject.org

Year Established: 2019
Outreach: State/US/Canada

Penelope Project was created after founder, Bryana Miranda, realized there was a gap in postpartum support for NICU parents. Bryana had severe and quickly onset preeclampsia. A day after being admitted to the hospital, she gave birth to her little warrior, Penelope at 28 weeks, weighing only 1lb, 15oz due to IUGR. Up until the day before the birth, Bryana had not been educated on preeclampsia, or it’s symptoms, nor did she know anything substantial about the NICU. Once inside the whirlwind that was the NICU, Bryana felt shell-shocked and completely alone. Rarely does one know that their pregnancy will end so drastically, landing their baby in the NICU. There was no support for parents, only the kind ear of the amazing nurses to talk to.

There were only support groups for term moms and their babies to blissfully attend together- to meet other moms going through the postpartum process. After the urging of her friend to attend, Bryana felt out of place. All of the other moms were there with their babies. All eyes pitied her as she told her story of her amazing baby just upstairs, still fighting for her life. Pity was not what she wanted, and frustration was what she felt. Frustrated that she was blind sided by her NICU experience with no proactive education. Angry that there was no support on how to navigate this journey. Right then and there she knew she needed to make sure no other NICU parent ever felt like this again.
Bryana explains it best in the letter that is included in each Penelope Project Parent Pack.

“Dear Parent of a NICU Warrior,

I was you. I was sitting right where you are right now, watching my baby grow through a plastic box, hooked up to ALL the things. I didn’t understand why it happened to us, to me, to her. Yet, I never blamed myself. I saved her. I took her from an unhealthy living environment into one where the professionals could help her thrive. Even so, how would she know I was her mom if I couldn’t take care of her 24/7? How the heck was I supposed to help a 1lb 15oz baby that came three months too early? I didn’t know what a SiPap was, that they made ventilators that small, or that gaining an ounce would feel like winning the Olympics. I felt useless and anxious. I had no idea why those machines were beeping, how to keep up with the numbers, or which wire/tube went where and why.

Then there was the internet. There were a million blog posts about newborns with their moms blissfully at home in their postpartum period with their beautiful full-term baby. Warriors who had just given birth that were able to recover at home WITH their baby. That pregnant-woman fantasy of mine was no longer a reality. I was happy that they didn’t have to see their babies like I was seeing mine, yet I was jealous. I ached every time I passed a pregnant woman with her big, round belly. I’d see parents with their little ones and want to scream “I have one too!” Yet, my empathetic side would roll-in and I would always catch myself thinking about the other side. We could have had it so much worse. SO much worse. My baby was here, and though tiny, she would eventually come home with me. Yes, it could have been worse, but it could have been better too.

So, where was my village? I desperately searched to find stories like mine. The amount of questions I asked and research I did would leave my head spinning. After combing through the internet and social media, I eventually started to find pages, books and content that would help support me during our journey. The NICU nurses knew more about me than my family and friends, seeing me at most raw and vulnerable. Friends and co-workers came out of the woodwork with their NICU stories. I reached out to other moms just incubators away. We cried together when we had to go back to work, even though our bodies and minds weren’t ready. What else were we to do? We needed to save our maternity leave for when our babies came home. I started to feel a little less alone. I felt seen. The more I learned, the more empowered I became. I may not have been able to be with her every moment of the day but, but gosh darn-it I tried. I held her, read to her, talked to her. I made an online photo album with cute little designs made for preemie milestones and would send daily updates to family and friends. I tracked every equipment setting, feeding, vital sign, procedure, lab, medication, weight, temperature, diaper change, and visitor. I was my little fighters biggest advocate.

No one prepares you for the NICU. That is why we are here. To help guide you through your journey by connecting you to the care you deserve and the resources you so desperately need. We see you. We hear you.

We are your village.”