To Be Understood

Throughout the existence of this blog, I have tried with the utmost restraint to avoid weighing in on the “a preemie is a preemie” discussion. (It is the idea that having a 35 weeker is similar to having a 25 weeker.)

Personally, I thought Tatum at Ain’t No Rollercoaster did an amazing job addressing the topic the last time it went around. I am annoyed to see it being discussed AGAIN in the preemie realm.

While I find the “a preemie is a preemie” discussion irritating, it occurred to me that maybe there is some sort of misunderstanding.  I want to believe the reason it exists is due to miscommunication. Here is my attempt to clarify:

When I use the term micropreemie or talk about our three months in the NICU, I am not competing or trying to “one up” other parents. I am simply searching for understanding.

Whether others wish to recognize it or not, having a micropreemie (or baby with a long NICU stay) is a different experience than having a later preemie (or short NICU stay). This realization  became clear to me very early in my preemie journey.

Sometime in the first week after Charlie’s birth, I attended my first NICU class. Other NICU mothers were seated around the conference table talking. I quietly chose a seat and observed the other moms. I listened as they discussed nursery design, baby clothes, and plans for when they got home. These were all things that I was afraid to think about. I didn’t know if my baby was going to come home. It was impossible for me to think beyond that evening.

As I watched, I wondered what was wrong with me. Why was I so scared? Why was I so saddened by my baby’s birth? Why did I feel like my heart was breaking? These other moms could pull it together… why couldn’t I?

It did not take long for me to figure it out.

The instructor had asked each of the moms at the table to state their baby’s gestational age at birth. With the way things were ordered, I was last in line. The mom before me announced loudly, “My baby is the smallest baby here! My baby was born at 32 weeks.” I cringed. I wanted to crawl under the table and wished I could disappear. This was a contest I did not want to win. I must have been thinking about that for some time because the instructor had to prompt me. I whispered, “26 weeks” as I exhaled and possibly whimpered.

There was a moment of stunned silence. Suddenly, I was bombarded with questions such as “How big is your baby?”,  “What does your baby look like?”, and “How do they put in IVs?”

At that moment, I knew I was in a very different world than they were. Even between NICU parents, there are varied experiences. Many are making plans of WHEN they will take their baby home while others are wondering IF their baby will go home.

There are some parents that have one of those super preemies that everyone alludes to when they meet someone with a preemie. On the other hand, there are babies that seem to struggle with everything.  Each NICU baby’s journey is different. I do not see any harm in recognizing that or attempting to find those with similar journeys.

When I use the term micropreemie or discuss the length of Charlie’s NICU stay, it is not out of a competitive spirit.  It is twisted to compete about such things. Any NICU experience is terrible.

Choosing to use micropreemie is an attempt to relate to other parents whom have had similar journeys. Interestingly enough, one of the NICU moms that I found to be most helpful was not a preemie mom.

When someone says,  “A preemie is a preemie” to me, I find it to be dismissive of how hard my baby has fought. It ignores the struggles that we, as a family, have had to face. Overall, what is being conveyed to me is how they do not understand my world at all.

yougurt

Another beautiful picture taken by Monica DeMariano

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

6 responses to “To Be Understood

  • aint3113

    Thanks for the link. I tried to not talk about it in my blog too and it definitely lost me followers by sharing my opinions, but I’m glad you had the courage to talk about it. The main reason that I decided to talk about it is because I felt that micropreemie families were being alienated by not being able to even discuss why they disagree. Because we are only 1% of births we’re shoved into a corner and expected to conform to the thinking that everyone else has. But really, to me it’s even less than 23 weeker vs 35 weeker. I’d also say a 24 weeker is not a 24 weeker. Owen is his own case and so is Charlie and so is every other baby born too soon, or not. As you said, classifyng the type of preemie (as medically defined) is just one way for us finding those that more likely had a course similar to ours. Yes, there are outliers and assumptions shouldn’t be made that a 34 weeker had an easy course. One of the moms I rely on the most has 33/34 week twins that have many of the same ongoing issues as Owen. I don’t care that her kids weren’t as small or sick as Owen at birth, I care that she struggles with orthotics and extreme food allergies. That being said, most of my closest NICU friends were micro preemie families because they had the courses most similar to ours and, I felt, better understood more of the concerns we faced.

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    • woodra01

      Precisely! My closest preemie mom has a 36 weeker that like Charlie was supposed to be “fine” but things unfolded differently. I love your blog. Even though Owen and Charlie are having different post NICU experiences and challenges, I feel many of the emotions that you write about. Reading your blog has helped my healing process immensely. Much love to you and Owen. He is a cutie!

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  • Alyssa

    Yes! This conversation stuck with me for quite a while after it went around the preemie block and I had a hard time pinpointing where my feelings settled on the subject. Your words hit the nail on the head for me. So glad I have found your blog.

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  • Kristi Campbell - findingninee

    I agree with you that a preemie is NOT a preemie is NOT one. Thank you so much for sharing your perspective. It’s important, and needs to be heard. By everybody, those who had a preemie, a micro-preemie, or not. Everybody.

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    • Rebecca Wood

      Thanks so much. It was something I had to get off my chest the last time the topic circulated. At the risk of sounding like a swooning teeny bopper fan girl, I’m flattered to see you on my blog.

      I enjoy yours quite a bit. 🙂

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  • babylossmama

    I know this is old, but Amen. My son was born at 24 weeks, and lived in the NICU for 26 days before passing away due to the usual micropreemie complications (a heart and lungs that weren’t quite up to the task of, you know, living outside the womb). At a newcomer’s church group a month after he passed, we were sharing our story. Another woman in the group, bouncing her 8-month-old on her lap, exclaimed, “Oh! I know what you mean. We spent nearly a WEEK in the NICU and it was THE WORST.” I had to leave before I said something I’d regret…. but really, she had no idea. How could she? A week in the NICU with a 37-weeker (which, I wanted to point out, was full term, so come on) has absolutely nothing in common with a month in the NICU with a 24-weeker (who, I had already pointed out to her, didn’t make it). I still think back on that encounter with a “how dare she” attitude.

    Liked by 1 person

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