Thursday, October 04, 2007

It's been a while since I wrote about parenting my preemie in "adult terms" rather than in the neverending whine of "I'm tired, I'm tired, poor me". So why don't I put a few thoughts out there?

Two years, five months, and seven days ago, God gave me a baby girl who weighed in at a mere 1195 grams. That's not a lot. The machines that kept her alive were not only bigger than her, they were about twice as massive as the state of the art isolette that she lived in. We had to scrub our hands a minimum of three minutes with surgical soaps to be allowed to touch her for ten seconds through the ports on that isolette. There was a machine that breathed for her.

As a preemie with respiratory issues, she breathed very noisily. That was the trachea malasia, the soft spot on her windpipe. If there was a little congestion, if her nose was the least bit runny, you would have thought she had pneumonia and was ready to stop breathing. She was as floppy as any rag doll, but she was fully human, and there are so many bits and pieces that can be seriously injured or worse if let to bend into a way in which they were never meant to be. Forget being careful of the soft spot on her head- we were terrified that if we lifted her up to burp in too rough a manner we'd snap her neck like a twig and let the life out. That only lasted 6 months or so before she got as sturdy as a "normal" newborn.

Germs are the enemy. So is becoming a psychotic parent who puts their kid in a bubble. How in the world can you make a balance between keeping your fragile child a week out of ICU safe, without turning yourself crazy? How do you ensure that they get exposed to just the right set of germs to make them have healthy immune systems, without landing them back in ICU, without putting their lives at risk? How do give them a social life? How to keep yourself from going insane from the virtual bubble you have to live in?

It's hard. And after you work all that out, there are the runny noses, the colds, the coughs of your infant that make you second-guess every decision a thousand times. Every doctor, and you'll see dozens if not hundreds, has a different opinion for what is best. Most of the time they'll come into conflict with something else. If you're lucky, they won't conflict what you see as the real issue to be dealt with. You can't just schedule everybody when it's convenient for you, because this is not your convenience, this is your child's life. Miss an appt or miss a procedure and something else could be missed that will bite your butt later. So you see all those doctors, god knows where, packing up and packing out mountains of baby gear. Any wonder you get tired? This is on top of being a new mom, getting up for those feedings and changings, maintaining the medication schedule, the doctor schedule, recovering from childbirth... and if you're very lucky you'll have someone available to give you respite.

Not enough, people, to tell a preemie parent they need respite. It's one thing to hunt for a babysitter you'd feel alright leaving your kid with. It's another thing to find a babysitter willing to take on all the stuff a preemie entails. Meds? Nope. You might find someone willing to take the responsiblity for someone that tiny and floppy and fragile, but not meds, and machines? If your baby is on a monitor then you may as well forget going out ever. At the end of the day of caring for the child, there's very little energy left. Maybe enough to eat a decent meal and take a shower. There's not enough to then spend several hours finding people to care for your kid and arrange the interviews, then arrange the times, then go out somewhere.

So you save your strength for the next day. And the day after that. And one day you'll wake up and be able to cope with one more thing, one more chore, one more doctor into the mix.

Yes. I get tired. Less tired now than I was. I do not get so tired and overwhelmed anymore that I sit down and cannot find the strength to cry. I get tired of all those doctors, and all those specialists, and the medication that my kid doesn't want to swallow but MUST swallow so that she keeps getting bigger and brighter. Tired of the hyperviligence against germs and strangers. Tired of explaining to people that she's not just tiny or mentally retarded because she's two and a half and cannot do so many things that they expect of her at two and a half. I tell them that she was born 8 weeks early. She weighed around two and a half pounds. I don't know if they understand that any better. I hope they can connect that to the commercials showing micropreemies in isolettes, that they can realize just a fraction of what goes into raising a child from that plastic box to toddlerhood; I know that most of them do not. Just get a sitter, they say. Or just let her cry it out. Just sign her up for daycare a few days a week, or early preschool. Just make her potty train. Make her talk. Make her walk.

Well surrrrrrrrrrrre. You were planning on making the arrangements for this? You're sitting on the money to pay for these services? Because I love being told what I "should" do and being judged for not doing it when they don't see past the surface to everything else.

I wish I could speak for my husband's side on these matters as well. I won't. He faces a whole different slew of morons.

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