She’s Amazing

I always describe my former micropreemie, C, here as a healthy, thriving kindergartener.

 

I am not lying to you all.

 

When I look at my little girl, that is exactly what I see.  I would go out on a limb and say that that’s what both sides of our extended family see as well.  Her teachers and therapists only lend credence to this assessment when they give their reports.

 

But I have a confession…

 

Sometimes, I feel lost in the middle.

 

While C. absolutely bears some effects of her extreme prematurity (most notably poor vision and low muscle tone), she dodged so very many bullets that I would never complain.  She is not impacted by hearing damage/loss.  She doesn’t need nutritional supplementation.  She does not have cerebral palsy.  Her vision IS correctable and her retinas have been beautifully and successfully repaired.  Her lungs recovered so well, she no longer has a diagnosis of BPD and her “cold protocol” is the same as any other five-year-old child’s.  She’s in a main-stream classroom and does a good job of keeping up with her peers academically.

 

I don’t feel like I can fairly relate to those parents of children who are truly struggling, often on a daily basis, with the impact and lingering effects of prematurity.  These families are amazing.  It feels almost demeaning for me to try to compare the vision struggles we’ve undergone with others’ situations.  Yes, of course, I realize this isn’t a “contest” or “hierarchy”… but do you understand what I’m saying?

 

On the other end of the spectrum are the preemies who, blessedly, emerged completely unscathed.  Their stories are incredible examples of beating all odds… early preemies who never needed a ventilator.  Who were released before they were even close to their due dates because they were thriving.  Who are now the fastest/strongest/tallest/smartest in their respective classes.  Amazing.

 

That’s not our story either.  C. absolutely needed a ventilator– at one point on the very highest setting allowable before causing permanent damage.  She does well in school, but she’s not advanced or way ahead.  Her vision is corrected, but she’ll still never see as well as many children.  She’s a good eater, but still super small-boned and slim.  She is well-liked and determined, but it is serious WORK for her to keep up on the playground.  She receives (and needs) three kinds of therapy at school.

 

So… what then?

 

I don’t know.  I don’t know where we fit in.  I don’t know how to “categorize” my precious little girl.  But I’ll tell you something…  I mentioned how those families dealing with severe special needs are amazing– they are.  I mentioned how amazing those preemies who emerge unscathed are– they are.  And now I’ve told you where my little C. falls by comparison…

 

She’s amazing.

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11 comments to She’s Amazing

  • I know it is weird how’s it is kind of a hierarchy of ill=effects. I think your C counts as pretty amazing. :) Our NICU nurses told us people like you who are perfectly healthy and randomly go into pre-term labor tend to have the sickest babies (as opposed to sickies like me that grew a baby in distress for quite some time). That would make it seem like C “should” be so much less healthy…she is super amazing!

  • Katie

    No matter how C is categorized, she is definately amazing!

  • Becki

    All three of my boys tried to come early but were successfully stopped. I was told with all of them they would have been extremely ill, as with what Heather said. I am very thankful that they all waited!!

    As a developmental therapist working in early intervention, I have seen many preemies over the past eight years. It is amazing the variety of preemies, but one thing they ALL are, is fighters!! They are so strong-willed and are some of the most motivated kiddos I have ever worked with. Many of my preemies don’t look like preemies after a year or two. Most of my kiddos I have seen qualify under the preemie reqs do wonderfully. My kiddos that seem to have the longer lasting effects are those that aren’t immediately interested in the program, and then have to meet the 50% delay later. Preemies are definitely in a different group when it comes to kiddos, but they are usually the ones that work the hardest and are most proud of their achievements! Each preemie, no matter what they have overcome, is a champion!!!

    • Oh, preemies are TOUGH! To this day, C. is tough as nails when it comes to the big stuff. She can be sick as a dog and she’ll smile right through it and insist she’s “Great!” Loved this comment– thanks, Becki! And thanks for the work you do with these children. :)

  • Shelly Smith

    I just “found” your blog (via Raising Olives) and I LOVE reading about your birth story and amazing daughter! I am a “former” NICU nurse at Riley Hospital and know well the stories of which you speak (the good, the bad, and the ugly!)
    Thankfully for us, I am blessed to be a SAHM now to our three busy little boys (8, 6 and 3) but I will enjoy following your stories here on your blog!

    • Thank you so much for taking the time to comment, Shelly! I cannot even begin to express the gratitude we feel for all of our NICU nurses at Riley. Truly. I’m so glad for you that you are now able to stay home with your little guys and I am thankful to you for all the ways you touched so many families.

  • Courtney

    I’m completely with you! My 23-wkrs (b/g twins) are also 5 years old and your description fits them. I want to read a book called “Letting Go of Prematurity: A Parent’s Guide to Ages 5-10.” I don’t think a book like that has been written, but I could sure use guidance in knowing when to wave the micropreemie flag.

  • Victoria

    All preemies (all children really) are amazing. Really, a preemie that comes through completely unscathed is RARE (thankfully becoming more more common), so each positive thing is awesome to see! Don’t feel like you are in the middle – your girl is amazing indeed! Feel proud and be happy to talk about her acheivements and all she has overcome! :-)

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