Wednesday, June 21, 2006

Forty days and forty nights

Woody continues to recover from the extubation/intubation episodes of the last few days. I find myself tending to get nearly obsessive about various turns in his health like that, which is really weird because in the long term scheme of things it will probably turn out to be a footnote in the whole history of the Woodytime in the NICU.1

On the other hand, what can I focus on? Woody has already been in here for what seems like an eternity, and even in the more optimistic diagnoses he is likely to be in for another ten weeks or so. I have heard from some people who have been in similar situations, which I find helpful, because it's good to know that there is some kind of light at the end of the tunnel. On the other hand, I've been sent a number of links to research and other people's PreemieBlogs, and I gotta be frank when I say that with few exceptions (thanks, Vince 'n' Traci!), I find them utterly unbearable to read.

The most visceral example for me was reading the Snowdeal preemie blog; that kid started out at 25 weeks and I am very happy to see the recent pictures of a healthy, happy kid. But when I started reading the early posts, I saw far too many similarities to Woody's situation, and when I read about trips to the oscillator and when certain major developmental steps happening it made me very worried and uncomfortable when Woody wasn't matching those steps. The doubt that kept creeping into my head said if Woody isn't off the ventilator by day X then he won't ever be normal and I couldn't stick around to figure out what day X was, even in that isolated example.

This lesson was reinforced when Woody got diagnosed with the PIE and I did some research on it, discovering in the process that mortality rates are ridiculously high, and teaching myself one really critical lesson: if you're going to look up the actual medical research, check the dates of publication. I say this because the first study I read about showed that PIE has an 80% mortality rate-- and it wasn't until I followed up on this that I figured out that the study was published prior to the widespread use of lung surfactant, and described a variant that developed usually in the first couple of days of life in very premature kids back in the 60s.

Anyway, so my overall point is just that when I've learned that when you're in a long term chronic care situation, it magnifies the trials and tribulations that are just routine challenges. It makes me sensitive to setbacks that are otherwise minor ones, makes me read judgments into off-hand comments by the doctors and nurses, and otherwise impairs what I imagine to be a great strength of mine: my ability to separate big deals from small ones. If there is a solution to this problem, I'd love to know what it is, but the truth remains that every small deal could be a precursor to a big one, and Woody remains, despite his advances, a very sick little kid. Which isn't to say that have no faith in him. On the contrary, I believe with every fiber of my being that he is not just going to survive; he is going to be beyond a normal little boy. He is going to be extraordinary. He just has too much fight in him to not succeed. And I just love him so much.

On that note, here is a link to the second Woody movie, taken yesterday. It depicts a rather typical display of Woody getting feisty: he had been lying in that position for a bit, and he obviously is ready to get moved to a different one, but is unable to move his head very well because of the ventilator. Shortly after the end (it's about a 30 second clip) he got flipped over, changed, and re-snuggled. Pretty cute.

1. Woody pulled his tube out on day 37 and the same size tube was finally reinstalled on day 40.


At 5:15 PM, Anonymous Grammie said...

I'm struck by how much your description of living with a sick baby in the NICU sounds like a description I read in the paper a few days ago of a soldier's life in Iraq. You've shown incredible grace under pressure. Way to go, Nathan and Maggie! Way to go, Woody!

At 7:35 PM, Anonymous Aunt Susan said...

Nathan you really must stop this heart-felt writing that causes me to weep uncontrollably. Oh okay...I admit I enjoy a good cry every half hour!!

At 7:26 AM, Anonymous Grammie said...

One more thing--no matter how much stress and anxiety we've had to go through, our Woody is worth every minute of it. It is a privilege to have such an extraordinary little person in our family.


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