Friday, December 13, 2013

doctors, doctors

“So, if we have a baby, do you think you could work fewer hours?”
“Doesn't matter. He's gonna be so cute, I'm gonna eat him up on the first day.”
--Lily & Marshall, How I Met Your Mother


How true. Sometimes I come very close to eating him up! Of course, we avoid kissing fingers and toes since babies are likely to put those body parts in their mouths. But this whole childrearing thing, while extremely challenging, is even more rewarding, even at this early stage – we are finally getting some real smiles! And I’m not talking the I’m-in-a-state-of-hazy-dreamy-sleep smile, but the smiles that come as a reaction to our smiles, to baby talk, to a little tickle. I read that babies tend to smile at about 6-8 weeks, and Calder is now about 7 weeks adjusted, so he’s right on cue. Of course, catching one of those elusive smiles on camera might take some time - he moves from one mood to the next in a hot second!


At this point, we’ve almost been through our first round of doctor appointments and then some (minus the physiatrist – that one is coming up.)

Understanding the “master plan” for Calder’s progress is a little funny, though, since no one doctor is directing this show. I think part of it is that none of these doctors know Calder as fully as those in the NICU did. Whatever the reason, it can create some uncertainty for us, as we may have three doctors asking us when his next swallow study is scheduled but no one scheduling it (although we do have our own opinion on when it should be scheduled, and that’s sooner rather than later!)

second snow (missed the first!)
When we left the NICU, they opined that given Calder’s biggest issue we know of is his lungs, the pulmonologist would likely want to call most of the shots. This appointment occurred a couple weeks ago while Kraemer was in Ukraine, but thankfully my mom was along for the ride because we got lots of good info – the appointment went for more than two hours, and most of that time was spent with our doctor. Calder got a great report. We’re to wean him slowly from the various medications he’s on, and slowly wean his oxygen too. In fact, we’re already down from the 0.1 he came home on to 0.03 – we breezed right by the 0.08 the pulm recommended to 0.06 because the new regulator we are using can only be calibrated to 0.125, 0.06, and 0.03. And Calder continues to rock 99s and 100s on his monitor even at the lowest level. Before we left, Dr. K handed me his card and told me to email him directly any time, that it’s too hard to get through on the phone these days (and he is absolutely right about that.)

The G-tube, well, that one is another story. Total disaster area. Whereas it was once so beautiful, as our NICU nurse Laura put it, in the time between when we saw the pediatrician for the first time and the time our G-tube clinic appointment came around, the granuloma turned into something too solid to treat now. We’ll have to wait until they do the surgery to remove the tube, which will be AT LEAST a year down the road. For the tissue that continues to form, though, we will treat it with silver nitrate, this crazy substance that pretty much burns the skin into dissolution. The parts we treat are grey and yucky for a few days until they fall off. And that photo I am NOT going to post. There was also some concern that he had an infection at the insertion site, so we have had him on antibiotics for a week. The site seems to have improved, with the redness that remains being chalked up to irritation from the mickey itself. The dietician at the office told us to slowly increase his feeds by 5 mls a feed each week, to continue mixing it with formula, and to eventually use a pump because the amount of each feed will be so large that gravity alone won’t cut it – we’d be there all day.

Then there’s the ophthalmologist; the story of the logistics on this one can come later. But long story short, Calder has a little ROP left in one eye, but at his age, it shouldn’t get worse.

And so that’s where we stand today. But we have three more doctor appointments this week, so by next weekend, we’ll have a new story to tell. Hopefully a good one!

2 comments:

  1. Excited to hear Calder has been able to go down on his oxygen..and impressed by the size of your Christmas tree! We opted for a big fake one but that's nothing like a big real one! :)

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    1. Big fake one does the job, too, though! Kraemer carried it home for us from about two blocks down the street. Hopefully he liked it enough to do it next year, too. :)

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