• Liz Pappas

NICU Awareness Month

Updated: Sep 23, 2019

What to say about the month that reminds me of the worst days of my life?

Everyone seems pretty aware of the NICU. I mean I thought I was. A baby's born a little early or maybe even a lot early and they just need some time to grow. A few months later bada-bing bada-boom, and they're home. Happy, healthy, untraumatic. I understood it would have been difficult to commute, be away from your child, etc, etc, but I didn't really understand how absolutely, devastatingly heart wrenching birth trauma can be. And that's what every mother has gone through to have their baby in the NICU, right?

“Maybe if I was more aware, I would have known that just because a baby makes it to full term doesn't mean that everything will turn out fine.”

Charly was in the NICU for 63 days, but unlike most NICU stories, there was no sense of triumph or graduation upon leaving. Of course we were ecstatic to have her home and to not be commuting back and forth to a cold, depressing, beige hospital ward, but we weren't coming home with hopes of her improving. In fact, I was simply elated that we got her HOME. We got that baby home that was supposed to die in my womb. The baby that was never supposed to make it out of the NICU, nevertheless HOME.

What Might Have Been

If things had turned out differently, Charly's life would have begun and ended in the NICU. God could have taken her from us at anytime, but he chose to sustain her even when my body failed her, when her lungs needed a tube to breathe, and when she choked on her saliva so often that nurses stood by her bed around the clock to suction. But that's where our story is different from most. Most babies that come home from the NICU have developed enough to not need oxygen, suctioning, and a feeding pump. Most babies also come home with a sense of the world around them. Most babies can see, smile, and interact. Our neurologist told us that we'd have a more substantial relationship with our dog, and as blunt and painful as it was to hear, we knew it was true.

I spent the majority of my time in the NICU doing the following: pumping, staring out windows, holding Charly, and stalking other HIE parents on social media. I'd scour their pages for pictures of their 5 or 6 year old as an infant and scrupulously compare Charly to them. This kid was off the vent at day 2 and is walking! But this one doesn't need oxygen and is quadriplegic. I read as many blogs and books written by HIE parents as I could find, and I cried when I realized how disabled she was going to be. Then I felt guilty for crying. For comparing Charly to other babies. Then I'd cry some more. This was the NICU for me.

After the first few weeks Andy went back to the night shift. We'd get to the hospital sometime in the late morning, he'd leave for work around 2:30, then be back around 10pm. We'd drive home, then do it all again the next day. It was lonely, depressing, and devastating.

The NICU represents the darkest time in my life thus far, only to be outdone by the day Charly passes and all the days to follow. It was the time that I was the most depressed, the most alone, the most hopeless. But I was also filled with the most love. Every part of me lived for my new baby. The only thing on my mind was Charly. She was ever-consuming of my every thought and heartbeat. As we were confronted over and over with the option of withdrawing care, I had to grapple with that reality. The fact that I was even entertaining this preposterous idea the doctors were suggesting made me physically ill. At this time I didn't know that the Charly I was holding at 6 pounds would be doing the exact same things as the Charly I held at 20 pounds. I didn't know she'd be fighting off constant sicknesses and having seizures repeatedly throughout the day. I didn't know that her first smile would be induced by Valium, not my husband tickling her. But I wouldn't have changed a thing. If I could go back, I'd still choose to not withdraw care, and I'd choose it over and over again. Just to have another second, another day, another month. There are times now when death seems so close, and there's others when I feel like she'll be here for years. I don't want to predict, and I certainly don't want to choose, but maybe it'd be nice to know?

While the NICU Awareness posts are informative and absolutely ring true, for me each post I see reminds me of my inadequate knowledge to protect my fetus.

So this month I've been wondering: Maybe if I was more aware, I would have known that just because a baby makes it to full term doesn't mean that everything will turn out fine. If I were more aware, I'd know that just waiting for contractions to start wasn't enough. If I'd been more aware, maybe I would have ignored the advice to not research the things that could go wrong because I would just needlessly stress myself out. If I'd been more aware, I would have been more worried when I didn't feel her moving. If I'd been more aware, maybe I wouldn't have joked with the nurses in triage. Maybe I would've pushed for a C Section rather than agree to induction. Maybe I would have hit the nurse button when Charly's heart rate dipped numerous times on her monitor instead of trusting that someone was monitoring me. Maybe I would have listened to the nurse instead of the doctor when she told him that "this wasn't normal" and he whispered "don't say things like that." Maybe I would have requested to have more ultrasounds and checkups and demanded that my pregnancy be considered high risk. Maybe I would have realized just how poorly women are treated and respected in our country, and that I'd have to stand up for myself when I felt something was wrong. But how could I know? Before Charly, I had never heard of HIE or any pregnancy complications other than genetic diseases or prematurity. While my newfound knowledge doesn't change the outcome for Charly, maybe there will be another mom that can learn from my naivety.

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