Monday, June 27, 2011

Second verse, same as the first...

I'm already tired of the standard question set - it doesn't seem like all that long ago when Acorn came home and we at least got a new set of questions.

Every discussion with "normal" people here is identical:

Them: So, how's the baby?
Me: Fine.
Them: When's she coming home?
Me: No clue.

In most cases that ends it, because they don't know what else to say.

Thing is, we've learned over the last few years - that first question isn't really asking for a status report, it's an attempt at making polite conversation. A real update usually flies right over people's heads, and their eyes glaze over and they wander away, or they start making stupid comments like, "well, everything happens for a reason" or "you're so strong to go through this" or "God wouldn't give you something you can't handle."

Let's just say my responses to those aren't kind - snark is the nicest thing I can manage for those sorts of things (largely along the lines of, "oh, so your God is such a jerk that he makes little kids suffer to prove that I'm awesome?")

Thing is, I can't actually tell people how Leaf is - I can't tell them about atelectasis (and most of the time I can't even spell that!), PEEP, oxygen rates, blood gasses, or any of the other things we talk about every day. The same goes for Acorn - feeding issues, sensory quirks, the minute reasoning for why a smaller trach means he needs less oxygen...all those things are outside of most people's experience, and are things they don't really want to know. Any conversation takes forever because of the number of words I have to stop and define for them each time I try to give real details, the conversation grinds to a halt, and here we are again, staring blankly at each other.

I'm just so tired of it.

So, the Leaf update for those of you willing to sit through the details and explanations:

BPD (broncho-pulmonary displasia) is the term used when an infant needs oxygen or other supplemental respiratory help past their due date. CLD (chronic lung disease) often results in BPD - it involves damaged lungs and difficulties properly ventilating and oxygenating the body.

Most BPD cases are kids like Acorn - kids who start out with bad lungs, and are slow to improve. Doctors are now seeing a different type of BPD though - infants who start out ok, and get worse in their first few weeks of life. There's some thought that it's because more moms get steroids, so between that and surfactants, they don't do too badly at first, but then it catches up with them. That's what Leaf appears to be doing - we've gone from a PEEP of 4 (the pressure given by CPAP, or the constant pressure given when breathing out on a ventilator)  to a PEEP of 6. That last move was over the weekend,  and appears to be caused by some small areas of atelectasis (where the little sacs in the lungs collapse) in her upper right lung.

The good news is that since we're feeding her only hind milk (the fattiest part of breastmilk - imagine taking whole milk, separating it into skim milk and everything else, and throwing the skim milk away, leaving the cream and the milk solids) she's gaining weight appropriately. The bad news is that it took 2 weeks before that to regain her birth weight on TPN and another week of not gaining to decide to make that change, so now she's behind on the growth curve.

The week before last she had a pretty significant apnea episode, and had to be bagged. They actually started CPR to try to keep her heart going while they got a crash cart. After that, she had a septic work-up which came back negative, and they did a trial run of diuretics, which made her sodium go low. When that was discovered on Monday, it was supposed to be easily fixable by Wednesday,  but it's now the next Monday, and they were still giving supplements until this weekend, when her increased respiratory issues made them worry that the extra fluid retention was not helping matters any. It took this long to get the sodium right because she over-reacts to some doses, and doesn't react at all to others, so they're a little baffled.

On the up side, she's got temperature regulation under control, even though she's supposedly too little to do it. Her isolette is down to 28 C (about 82 F), when she's in just a diaper, and she's not quite 3 pounds yet. She likes her pacifier (a good thing, since she can't do any other oral-motor things like eating while on CPAP).

The plan right now is to wait...which sucks. But the hope is that with a little more growth, she can stabilize and come off CPAP and get on with this whole business of being a normal baby.

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