Tuesday, July 19, 2011

Where's the Other Shoe?

This little guy is doing so well, but I find myself looking for another shoe to drop.

Even before he was born, from the first conversation with a neonatal nurse practitioner while they were stopping labor at 24 weeks, we were told to expect a roller coaster. Ups and downs. Rises and falls. Two steps forward and one step back. With the possible exception of going on a ventilator for six to eight hours when he was 12 hours old, he hasn't. And really, can you call a 6-8 break on an ET tube a step back at that point?

At his six-month-old appointment, his pediatrician said he was on track for his actual age, not adjusted. I was tempted to argue that he still had six more months before we drop adjusted. The only thing he wasn't doing was showing signs of readiness for food, but given his reflux, we would be waiting a bit anyway probably.

The reflux isn't the other shoe, at least not for me, because his full-term brother had the same issues plus protein intolerances in his case.

I found myself hunting for things wrong with him in the first few months home. We actually ended up at a physical therapist because I noticed him turning his head to the right more than to the left. The physical therapist said that yes this was true, but I had caught it so absurdly early that with just a few stretching exercises we were able to nip it in the bud.

When he had been home a bit we saw the other pediatician at our practice and she thought the grade of his murmur had increased (comparing versus written notes since she hadn't seen it before), so we got referred to a cardiologist with an immediate appointment. The murmur was shown to be a benign increased flow outside the aorta. Not only that, but as of about two months ago, they can't even hear that.

He hasn't had an eye appointment in months, and so I wonder if the shoe is going to be at his appointment in October. But when I think honestly, I don't think that would be a shoe. Based on what they said at his last appointment, the worst we are looking at is glasses. Not a shoe in my book.

From talking to other parents of preemies, it seems that there is always a shoe. Some either short-term high-magnitude event or some life-long issue that has to be dealt with. Maybe it's eating issues and problems with textures. Maybe it's cerebral palsy. Maybe it's poor muscle tone. Maybe it's cardiac issues. But I haven't found anyone without another "shoe".

Is it possible that there's not a shoe? What age should I really stop looking for a shoe because most of them will have landed? Is it an age? Is it meeting milestones like walking and talking? Is it possible that developing the last ten weeks in change out of the uterus and six weeks before that in a still status without really working the vestibular system could really not matter?

In case it isn't clear, the first shoe was the event of the premature birth.

Last thought, I don't want to credit a shoe improperly. Like the reflux, that's not a product of his premature birth. I do know from friends and acquaintances that there can be a tendency to attribute anything that turns up to the premature birth. So, while I may be looking for a shoe, I'm going to continue doing my dangedest to know Chiron for Chiron and not for his premature birth, because it seems the most likely shoe would be me handicapping him by continuing to see him for his prematurity and crediting him for his survival rather than demanding things of him that I would otherwise.

I'm not sure that made sense...


Gratuitous Nursemaid Puppy Picture One - Chiron

Gratuitous Nursemaid Puppy Picture Two - Trajan

Gratuitous Nursemaid Puppy Picture Three

4 comments:

  1. Hi! Just wanted to say thanks for commenting on my blog about my gran today - I really appreciated it. I'm so sorry about the loss of your daughter...it's so brutal, isnt it? My little guy is now 13 months, but there's not a day that goes by that I don't look at him and wonder how his brother would have fit in the picture.

    Chiron is completely adorable - and way to go on hitting the adjusted age stuff!! Sam is small still, even though he was practically full term (36 weeks) - sigh. I know what you mean about feeling like there's another shoe...even though Oliver and Sam weren't twins I still feel like I'm looking for a shoe with Sam sometimes.

    That said, I'm pretty sure that with Chiron there is no other shoe. I think maybe there was one giant boot when the twins were born and no one EVER waits for the other boot to drop. That's because there's only one boot. See? You're all good.

    May Chiron continue to grow strong and healthy!

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  2. Read this a while ago when my two were still teeny tiny, and it made me know that I'd always think about them in terms of their prematurity, but that it would get better over time.

    http://www.washingtonpost.com/wp-dyn/content/article/2010/08/10/AR2010081004654.html

    I actually ended up talking to the writer of this article on the phone and she was great! We're not too far away from each other and we'd planned to get our two families together for dinner, so I could see just how "normal" her preemie boys are as teens. It never happened, for various reasons, but the point is, normalcy does come for some -- and so does peace.

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  3. I actually had read that sometime in the past, but that was a great reminder. Thanks!

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  4. Made perfect sense to me.

    Well, J is now three and . . . I think . . . there is no other shoe. Just the initial one.

    I think it's difficult when you've been told to brace yourself for future problems. I know I was kind of expecting CP as she was so early. But no. There seems to be nothing wrong with her other than kind of being a wee bit on the slow side with some stuff. But that could have happened anyway and might be nothing at all to do with her prematurity. And I think, with ex-prems, they are always being closely monitoring for that other shoe and sometimes that ends up an improperly credited shoe! For instance, J can be slightly clumsy at times. Could be an ominous sign or could be genetic inheritance from me, also slightly clumsy? Just have to wait and see!

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