Tuesday, February 23, 2010

In a perfect world....

....children would not die before their parents, particularly not when they're tiny.

One hard thing that comes of being the kind of special needs parent who faces life-threatening medical issues every day is that you meet people along the journey, fighting similar battles to keep their children alive and growing and healthy....and sometimes those children lose the fight.

In November, it was a child here close to home that we shared nurses with - a little boy sent home with a trach and vent at 11 months to die, who lived to be almost 7.

In December, it was one of our trach friends from the trach board - one minute fine, the next minute gone (literally).

In January, a member of our local attachment parenting group went in to the hospital, and her little one died a few days later (a full term birth, but with complications they didn't know about ahead of time).

And today....another of our trach friends A little guy who'd been fighting for a while, and who was, to all appearances, getting better day by day after his most recent round of surgery (which took several months of recovery), and then another illness.

Days like this, I look at Acorn, and all he's been through, and the odds stacked against him.

By gestational age, he had a better than 90% chance at survival, but he also was super small for his age because of pre-eclampsia, and if we counted by weight.....it was closer to 75%. We dodged that bullet, though there were times we came close to losing him.

The risk of major disability in babies born at 27 weeks who survive is about 10-15%, and it appears we've dodged that bullet too, even with a small brain bleed early on, and his numerous low oxygen moments.

The risk of "minor" disability (attention span, coordination issues, vision problmes etc) is on the order of 50% for kids less than 3 1/2 pounds. Given the family history of poor coordination, needing glasses, and ADD, I'm guessing for him it's closer to 99% :)  - but these are all manageable things.

He had no retina problems, no hearing problems (believe me, we've been through nearly a dozen tests). He has caught up on all but a few of the adjusted age milestones for OT and PT - the things that worry me these days are, I'm told, almost all within normal limits for his adjusted age, though his overly pronounced preference for his right hand isn't normal, and kids his age ought to be running and dancing and kicking balls and jumping, and he's just learned to walk.

I'm not sure where a trach falls in this major/minor disability thing. But...days like this I frequently feel guilty about complaining about it at all, because, as far as we can tell....

Acorn will eventually be one of those kids that you'll never knew was a preemie.
  • His breathing issues are resolving as he grows.
  • His pulmonary hypertension is completely controlled with a steadily decreasing amount of meds/weight, and is suspected to be resolving on its own as he grows.
  • His hypospadius will be repaired surgically this year.
  • He's catching up on phsyical things through lots of therapy
  • He's still not talking, but he's making plenty of sounds with his PMV, and with two speech therapists, he'll catch on quick.
  • His teacher, therapists, and nurses all comment on how smart he is, and how he watches carefully first, but then knows exactly how a new toy or activity works - once he gets the idea behind a physical motion he needs to do, he's off and running with it, and showing improvement with the task at the next session.
I'm not gonna say he'll be normal - we're not normal, and I'm sure living with us warps his sense of reality every day :) But, really, by the time he gets to kindergarten, he'll be as typical as any other kid there. And while I thank my Gods and Goddesses every day for that blessing.....I wish everyone else could have the same gift.

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