It's not a race, it's a marathon.

We have been getting caught up into building our social community for a few months now and I have interacted with individuals that would have never crossed my path otherwise. We have blogged about baby products, daily activities and even toddler snacking. But, we have never steered away from raising awareness on what is important to us. Advocating for mamas and babies.

September is NICU awareness month, and we are here to show our support for the ones living in that world now, because it really is a different world.

What is a NICU?

Neonatal Intensive Care Unit, a place were a miracle happens, everyday. A quite, but oh so noisy, environment, surrounded by doctors, nurses, therapists, counselors and crushed parents. You are only allowed into the NICU if you are a parents or a family member of a tiny baby inside. Not more than one extra person is allowed by baby’s bedside. You are required to wash your hands, up to your elbows, and remove all your hand jewelry. You have to sign in, and cannot stay past 8 P.M.

The reason I consider the NICU a different world is because it is a different world. The rules, the language, the atmosphere is nothing like you’ve ever witnessed before.

Time. Time is looked at differently as well. An hour is the NICU is not a regular hour in the real world. Why is that? Because there is so much that can happen in one hour, heck in one minute. A baby can change their entire recovery, their entire stats, and their entire status. Things can get much better, but things can get much worse as well. You experience not one mental crash, not one breakdown, not one reset, but numerous ones in that ONE-hour.

A NICU has pods; each pod has about 8-12 babies inside. A nurse that is assigned one to two babies each shift. There is a day shift nurse and a night shift nurse. These pods are filled with parents holding their new borns, crying over their beds, and some just looking because their babies are still too fragile and little to be held. Moms are in the pumping room pumping out their breastmilk for when the day comes that their baby will eat something other than an IV.

There is also a room called the high-tech room. A room unlike anything else in the NICU, a room isolated from all the other babies. Our Mini was in one of those the first 6 days. A room where it’s just the baby, the machines breathing for her and the monitors. A dimmed room, a very quite one. And the only thing you hear is your own breathing, the beeping and the doctors or nurses coming in and our to check on your baby.

When Mini was diagnosed with PPHN (Persistent Pulmonary Hypertension in a Newborn), we weren’t even allowed to touch her. No lights, no sounds, no stimulation of any kind. We hovered over her and looked, day and night, just looked.

I can’t tell you my emotions were a rollercoaster, I can’t tell you I was heartbroken as a new mom, I can’t tell you I was depressed and isolated, I can’t tell you I was lost, and I can’t tell you I was in pain. I can’t say any of those things because none of them really justify what I felt, but I will try and explain it to you.

You don’t know pain until you are unable to help your child through theirs. You don’t know sadness until you are unable to hold your newborn baby. You don’t know fear until you fear losing your child. You don’t know loss until you lose all the hope you ever had. I used to sit in on all the doctors rounds. They used to go from baby to baby and discuss their prognosis. Once they came around to Mini, the discussion wasn’t a short one like with previous stops. It wasn’t a 2-5 minute, even 10-minute discussion; they lasted half an hour to an hour. I stood there with them, pretending I knew what they talked about, pretending I understood the terminology. In reality, barely keeping myself up on my two feet because this is MY baby they are talking about, this is HER prognosis they are mentioning, HER options and HER survival rate. MY baby.

Have you ever had a dream, that dream where someone is chasing you, you’re scared and all you want to do is wake up. You know it’s a dream and you just want to snap out of it already? That’s kind of what it feels like. The only problem is, you can’t wake up, you can’t snap out of it. It’s not a dream; it’s your life, your reality.

Your heart sinks at every beep coming from that monitor, because you conclude the worse. Your thoughts take you to a scary place because you’re scared of the possibilities.

Dr. Stitch used to tell my husband and I that our NICU journey “wasn’t a race, it was a marathon.” Nothing can be tackled in one day; nothing can be resolved so quickly. It takes time, it takes patients and it takes trusting. Those 29 days spent in the NICU were life altering for me. I walked out of the hospital with a new outlook on people, on this world. So grateful for individuals I had met there, so grateful for new friends. Leaving the NICU I promised myself that I’d share my story. That I would open my arms to other parents that wanted to share theirs. That I would make sure the world knows of the possibilities and how to help prevent them.

This is why our collaboration with March of Dimes is so important to us. They are dedicated to study and research on decreasing prematurity rates, to making sure babies are born healthy. We have joined forces with them to try and do the same. To want to make sure that there aren’t a lot of stories like ours.

About half a million babies are born premature, sick, or with a birth defect in the U.S each year. Half a million! Let that sink in. This year, about 380,000 babies will be born too soon. Too many won’t survive. Here are some facts:

We hope that you continue to share our story, all stories, and continue and raise awareness for Preterm birth, Illnesses in New borns, birth loss and birth defects.

With love,

a mama + her mini