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Challenge: NICU Parenting

Finding My Voice

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The rollercoaster. All you hear about is the roller coaster. 27 weeks and 5 days gestation, in a magnesium induced haze speaking to the neonatologist on staff about what I would be experiencing once my baby was in the NICU. There are two things I remember from that conversation that night (maybe day).

The first was that I wouldn't remember anything that she was telling me because of the magnesium,

The second was the rollercoaster that awaited us.

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My son, Lukas, was born at 27 weeks and 6 days gestation. As many mothers of premature babies, I only got to see my baby for a few moments before he was wicked away to the place we would call home for the next 93 days.

We are 4 years removed from leaving the NICU and some days I still don't feel like I have overcome the shock. I have to remind myself regularly that those 93 days were my life. These were (and still are) all feelings that inhabited my body at one point or another. The sadness of watching helplessly as my baby fought for his life. The routine of "scrubbing in" and bonding with my baby through Plexiglas The guilt of not being able to keep him in long enough. The overwhelming joy from seeing grams gained on the daily white board update. The anxiety of alarms ringing from O2 saturation drops, Apnea and Bradys. The first real moment of bliss when I got to hold him for the first time at 21 days old. Most of all, the feeling of my blood turning ice cold when I overheard a respiratory therapist say during shift change "this one tried to leave us last night" while standing outside of my baby's door.

WHAT?!?! My baby?!?! Why didn't I know that? Why wasn't I there? Why didn't I say more, do more, PLEAD more the day before when I knew something wasn't right.

The day prior to this incident, his primary nurse and I both noticed something wasn't right. He was doing so well that week. He was so feisty. He fought his gentle pillow restraints, managed to pull out his breathing equipment and NG tube frequently. He always kept his nurse on her toes. This day something was different, his oxygen drops, apnea and bradys were increasing not decreasing. He wasn't moving much and didn't care to wake up much during his "hands on" times. Something definitely wasn't right. They kept saying his blood gases were lower than normal but within the acceptable range. They said he may need a transfusion soon but they weren't willing to do it just yet. He continued to get worse during the day. His primary nurse fought for him with the neonatologist on call to try to get them to reconsider the transfusion. They still refused. "He is still within normal limits" they reiterated. I trusted it. They were trained to do this and I was sure they knew better than me, a panicked first time mother.

I was wrong. They are trained medical professionals and I respect what they do more than almost any other profession out there. However, they didn't know my baby, His normal limits didn't necessarily match up with the average baby. He struggled that night and had to be resuscitated. When I came in the next morning, he was being prepped for a blood transfusion. He had "tried to leave them" while I was home asleep in my bed. I was heart broken and sickened that I didn't do more, I didn't SAY more.

I had never been the vocal type. I would never volunteer my opinion or speak out if not required. That day, something changed. In talking with the nurses, it was made painfully obvious that I was the only one that could advocate for my baby. The nurses and doctors would do as much as they could but I still had to be his voice.

I am a firm believer that everything happens for a reason and that painful night/day prepared me for the remainder of our NICU stay and my new life as a mom. I found myself speaking up when it came to being a part of his daily routines. Asking questions every day when I received his daily update so I had all the answers I needed or wanted.

When it seemed that our path to escaping may be jeopardized by a misunderstanding of his ability to feed from a bottle, my newfound ability to speak up and speak out ended up ensuring we stayed on track. It allowed me to form a team of people in the NICU to help

Speaking up when it seemed there was a miscommunication on his ability to feed from a bottle. My newfound ability to speak up and speak out against the things I knew to be true about my son, ended up ensuring his path to escaping the NICU was kept on track. I was able to have a team of people in the NICU that heard my voice and made sure it was heard every single time. I know that we would have been in the NICU longer or choices would have been made that I didn't approve of, had I not had the wake up call that snapped me into the version of myself I was meant to be.

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He not only made me a better mother but a better version of myself. I now take every opportunity I can to share our story. To get the word out about prematurity awareness and being the advocate you need to be. I know that since we have been out of the NICU, I have had so many friends and family experience the terror of time spent in the NICU and in some cases the loss of their sweet babies. I know that I would have never had to confidence in the past to reach out to those families and lend my support in any way possible. If our story can help even one person that needs to hear it, I know that we have done is what we were put here to do. I will continue to advocate and raise awareness, not only because it's so important to be a part of the discussion but because I now can be the one to start the discussion.

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