ex machina
the eric update - day 39: improving. or not, depending on your perspective. and poundcake!
in the new world that kris and i live in, the world where things can go from good to horribly bad in three hours and we're constantly trying to come up with new and innovative strategies to prevent us from turning into the weak-willed people with the small brains who run shrieking into the burning wreckage, it still would have been impossible to predict ahead of time exactly how we'd react to a 6 a.m. nicu phone call that resulted in us discovering that eric had been diagnosed with pneumonia, mere six hours after being told that his clinical picture was improving.
instead of shrieking, we found ourselves confusedly attempting to discern the implications of the cruel laws that we apparently must learn to abide by in our new world. "but you said he was improving?" kris queried. "oh, he is!" the caller stated, perhaps a bit too emphatically. i pondered what we should prepare ourselves for if he really starts improving. slowly, we discovered that, occasionally, the progression of pneumonia is such that you really can start improving before you ever get diagnosed as having the condition. in other words, the classic hazy x-rays which conclusively indicate pneumonia can appear after you've already started to gain ground on the bugs that cause the effect. so he was improving, in terms of his blood count differentials and other immunse system indicators, but our mistake was in believing that by using the word "improving" the staff really meant that eric had escaped getting another diagnosis put on his permanent record. apparently we were wrong.
getting the pneumonia diagnosis is quite normal for a micropreemie, as nurse donna's unscientific estimate was that 90% of babies born prior to 28 weeks get the condition ( incidently, i suspect that a micropreemie parent can't not begin to hate to hear the various trials and tribulations that their child must suffer through described as "normal". ), and 50% of children born so soon will develop pneumonia more than once during their stays at the nicu. since eric's lung x-rays indicate that his lungs are already beginning to recover, i suppose we need to focus on the fact that things could have been much, much worse. even so, barring any complications, eric probably won't fully recover from pneumonia for 2-3 weeks. while he likely won't need to be on the vent for the entire time, we've noticed that the staff has stopped making predictions as to when he'll be off the vent.
it's hard to imagine what tommorow will bring.
oh. and in an attempt to accentuate the positive, i should note that eric weighed in at 1075 grams or almost 2 pounds 6 ounces.
update: in my tiredness when i posted this last night, i forgot to mention the highlight of our day - the arrival of two pounds of rowena's pound cake with "curd" sauce that my sister candy sent to celebrate eric hitting the two pound mark! it was a very sweet gesture. literally :-)
candy mailed the pound cake to my home ( she's family, so she gets to do that ) and i cleverly took it to the nicu right before the shift change, so that both the day and night shifts could enjoy the gift ( bonus points for me! ). i can say without a doubt that everyone enjoyed the cake.
8/12/2004 11:30:00 PM
9 comments
9 Comments:
I will choose the perspective that he's improving :) I don't have any stats either, but of all stories of preemies I heard, they all had episodes of either pnumonia or RSV or both, and not just once but a few times. (talk about rollercoasters!) I would guess it is extremely common. It sounds like they're on top of it and will monitor him closely. I really think that even though it's a scary word, pnumonia can be seen as fairly "normal" for a preemie. I'll be hoping the pnumonia clears up relatively quickly.
Hugs
C
By 
, at
8:42 AM
i think he's probably improving too. and i don't know if nurse's donna's numbers are exactly right ( although with 20+ years of nicu experience, i'd bet they are pretty close ), but i do suspect that getting pneumonia more than once is "normal" ( arrrggh. there's that word again. )
crap. i just realized that i forgot to write about our highlight of the day. i need to update the post.
In searching for positives--could the pneumonia be the reason he's needing more oxygen? If so, then maybe he doesn't have cpip and will go back to room air once he's recovered from the pneumonia. A short term bad beats a long-term bad, right? Hope he recovers soon. Sending positive thoughts to you and Kris also--it must be really hard to deal with so much stress on a daily basis.
cindy
By , at
10:18 AM
yes, cindy, you're exactly right. in editing down the post, i accidentally cut out that part. thanks for highlighting what is an important implication. indeed, eric was being gradually "dialed back" of his oxygen and they sucessfully removed some of the mucous from his lungs.
of course, he's still at risk for getting cpip or bronchopulmonary dysplasia, but for now, i think we can safely say that some or all of his need for increased oxygen was due to the pneumonia.
Ah, glad you got the cakes. Glad it scored you some brownie points (or cake points, rather) with the NICU staff. I love Rowena's - yum!
C
By , at
11:21 AM
Many a cliché will be thrown your way in an attempt to make you feel better about your situation. Stories about other children might only help in the short term, and might make it worse for the exact reason you alluded to before, you can’t compare on preemie to another.
The desires to scream, and cry, are strong ones. Do not avoid them (of course, scream only outside of the NICU for god’s sake!). This is a painful time, and you must make sure that you take time for yourselves (our nurses kicked us out a couple of time for “dates”). Buy Kris a massage. Buy the nurses Krispy Kremes. Read to E4 (Andy had an e-mail address that family would send him messages of encouragement we read to him), and as strange as this might seem, enjoy this time with your child. You currently are under the guidance and love of the world’s most expensive babysitters, and if they were anything like ours, they would kill to protect your child. You are right; I don’t know how the nurses do it either. One 30 year NICU nurse veteran told me, when I asked the same question, that while the pain is high – the job satisfaction is even higher. We bring Andy back to the NICU for visits, it is the only way we can think of to say “thank you”, although it is still inadequate.
There will be a point when you forget this time, but I don’t think you should. You will be a better parent for going through this, I guarantee. A few years from now, when E4 is toddling across the floor, for some unknown reason you will start giggling and crying at the same time. It’s okay, it is just your realizing that you are the parents to the strongest, bravest person you will ever meet in your life.
Many a cliché will be thrown your way in an attempt to make you feel better about your situation.yes, indeed. this is a very touchy topic, since i don't ever want to belittle, begrudge or otherwise show any lack of appreciate for anyone's attempts to make us feel better, but i know exactly what you mean. i think basically people just don't know what to say and fall back to the familiar. relatedly, i'm surprised that nobody has come up with a "top 10 things to not say to a nicu parent to make them feel better." not that any of you have ever said any of them, of course :-)
Stories about other children might only help in the short term, and might make it worse for the exact reason you alluded to before, you can’t compare on preemie to another.i thoroughly enjoy hearing everyone's stories. and i won't be shy about politely asking someone to stop sharing if that position changes. however, if someone decided to start posting stories about how their 23 weeker made it out of the nicu without any problems and is now president of the national honor society and a budding movie star, then i might change my mind a bit faster.
me furiously scribbles note to self.
(Andy had an e-mail address that family would send him messages of encouragement we read to him)duh! why didn't i think of that? jeeeeeez. anyone can send eric an email - odin (AT) snowdeal (DOT) org. anyone should feel free to send him an email. and a postcard :-)
A few years from now, when E4 is toddling across the floor, for some unknown reason you will start giggling and crying at the same time. It’s okay, it is just your realizing that you are the parents to the strongest, bravest person you will ever meet in your life.yeah. it already happens when i think about how much he's already accomplished. i think he's going to think i'm wierd a few years from now when i just sit around staring at him, slackjawed.
uh. for some reason blogger decided to seriously munge that last comment. the italicized parts are from robb's comment. i don't know why it decided to selectively ignore line breaks. and it did something interesting with the "mailto" link. don't bother clicking it, since it'll take you to my site rather than opening up your mail applications. wierd. if you can't figure out what odin (AT) snowdeal (DOT) org means, let me know.
oh. and "me furiously scribbles note to self" was in response to "Buy Kris a massage." :-) maybe i need to get more sleep since i clearly can't be trusted to construct a coherent comment at this point.
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