{NICU awareness month}

Can I just be real with you? This month is NICU awareness month. I have so many things I wish I could say about it, but I am struggling to type the words. Mostly because our time spent in the NICU with Bernadette was painful. She was sick. She was struggling. I spent days sitting by her bedside waiting for just the chance to speak with various doctors involved with her care, to understand the plan and how we were moving forward. I spent many days choking back the tears that threatened to escape my eyes at any given second. I spent days walking to and from the Ronald McDonald house to her room, to the cafeteria, back to her room, and so forth. It was overall a painful experience.

I will never forget the day we moved from the Cardiac ICU to the NICU at UCSF. Bernadette had her first heart surgery and was struggling post op. They had fully expected to send us home in-between surgeries. That unfortunately was not what ended up happening to us.

We had been in the CICU for a few of days before she was stable. Bernadette had been slowly weaned off a handful of meds but was struggling to wean off others and was still on high respiratory support. The nurse we had in the CICU had mentioned first thing that morning there was a possibility of us moving rooms due to other surgeries happening and her room being needed. For a moment I thought this was good news. Maybe we were one step closer to going home.

He went on to inform me that she would be moving to the NICU, where we had first been admitted prior to her first heart surgery. My mama heart sank.

I had briefly stepped out of the room after snuggling her close to get some fresh air. I wasn’t ready for the change. I felt like I knew the nurses, the cardiac team, the lay of the land and it felt like they were kicking us out. I felt like we were going to be forgotten down in the NICU. Change is hard and in a situation like we were in with Bernadette, it was even harder.

I came back to find her being packed up and transported in her crib. Fear crept in and my nerves heightened as she began screaming during the transport. I felt helpless as they wheeled her bed to her new room.

The next morning, I arrived bright and early in her room. I wanted to be there for rounds and wasn’t sure when that happened. I met our new day nurse and tried to make myself feel more at ease by walking around to the parent lounge. It wasn’t working.

The doctors came by for morning rounds and the whole team came into her tiny room. I couldn’t help but cry. All I could hear were all the things that Bernadette was struggling with and it was hard to listen to from all these unfamiliar faces.

One of the residents stayed back as the team left our room. She offered a hug and asked if I was ok. I began to cry to her about the change in floors and how everything felt different and scary once again. She and one of the respiratory therapists who had come in to check out what equipment Bernadette had been sent with reassured me that Bernadette was in the best place. They both reminded me that the NICU’s specialty is babies and Bernadette would be in the best care. The cardiac team would check in daily to see her progress, or lack thereof in her case, and they would communicate with them anytime there was a change in her status or if they needed to adjust her plan of care.

That pep talk along with the many hours of encouragement and pep talks I received from all the nurses and other residents helped so much. Something that was so scary and so unfamiliar started to become in a weird way my new normal.

The NICU is a crazy place. There are babies who need extra attention after birth, others are struggling to survive, some babies waiting for surgery, babies who were born prematurely and so many other things.

The NICU brings so many emotions. All the emotions. There are hard hard days. Days I felt like I wouldn’t make it through. The hours passed by so incredibly slow. I found the baby saver nurses to be some of the most incredible people I have ever met. Calm, strong, sensitive people who can place IV’s, drop NG tubes, swaddle tightly, comfort both mom and baby and do so so much more. My words can’t even thank the many nurses we had enough. Especially the ones I now call friends, the ones that advocated for us time and time again. The ones that helped me find my voice, who gave me the confidence in myself as Bernadette’s mom.

Mama of the baby in the NICU. The tears are ok. Let them flow. I spent too much time thinking I needed to hold it all together only to realize in hindsight I didn’t have anything together the entire stay in the NICU. It is a scary place full of emotional lows. Talk to the nurses or the social workers. Anyone who can help you navigate the unfamiliar surroundings. Talk to anyone who will answer your questions even if it’s the same question over and over. It’s important to understand what is happening to your baby. Do what seems right to you, whether that’s spending all the hours bedside with your baby, getting out for some fresh air, spending the night away from the hospital once in awhile. There is no right way to do things and in talking to the nurses they all reminded me I needed to do what made me feel the most comfortable.

There are so many other mamas in there with you. They may not be experiencing the same hard as you, but their baby is in there fighting for his or her life as well. Mamas just need a hug and a friendly smile, the look of you are not in this alone. I see you too.

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