August 10, 2010: The Bad

August 10, 2009

In our experience* these are essential terms for new parents to be familiar with during the first year:

Complete blood count (CBC), ventilator, continuous positive airway pressure (CPAP), nasal canula, peripherally inserted central catheter (PICC), pulse oximeter, Methicillin resistant Staphylococcus aureus (MRSA), contact isolation, pulmonary hypertension, bronchopulmonary dysplasia, retinopathy of prematurity, nasogastric, gastronomy, gastrojejunal, stoma, enteral feeding, Mic-Key button, foley tube, emesis (mucho grande), grams in an ounce (~28), milliliters in a fluid ounce (30)

*experience not typical. Consult a neonatologist before using any of these terms.

We'll save the trite "oh how the time flies" and "what a year it's been" and just cut to the chase: the past year has been a grind, pure and simple. It has been long and difficult and to have made it through without suffering a nervous breakdown or divorce is a minor miracle. And marking a year on the calendar represents a little less of a milestone given how far we have to go.

That's not to say we feel sorry for ourselves in any respect because, first of all, Charlotte is amazing and worth every 12 hour drive and late night puke-fest. And also being in the NICU as long as we were, we saw how truly bad things can get and we didn't even approach it. Not even close. We brought Charlotte home and that is a gift that some NICU parent's don't get.

It's just the relentlessness of the past 365 days that has worn us to the bone. The feeding schedule. The pumping schedule (I'll defer to Katie on that one). The doctor schedule. And those are just the planned items. Being constantly aware of where the feeding tube is every time we pick up Charlotte is one of those sneaky things that drains a little bit of mental energy without really being conscious of it.

But Katie has developed an excellent assessment tool for us to take anytime were feeling stressed and trying to cope: The Side of the Road Test. In the darkest hour (usually around midnight on US 41 between Crystal Falls and L'anse) if we can ask ourselves "Would I be happier to leave Charlotte on the side of the road and drive off?" and answer "No", then we pass and move on. We've passed easily to this point.

It's hard to say how different things would be if Charlotte had been full-term. We've obviously had some things to deal with that full-term parents don't, but it seems a lot of it is relative as well. If Charlotte hadn't been 1lb 7oz and on a ventilator for weeks and so on and so on, wouldn't we just be stressed about other things like sleeping through the night or...as I'm typing I just realized I have no idea what sorts of things "normal" parents deal with. But I'm sure whatever there is, it is stressful because it's your child and tallying up who has had it harder is just semantics and a waste of time.

However, with all of that, I do think it is time to consider the real possibility that Katie or I violated some sacred burial ground.