Wednesday, April 2, 2014

When Letters Become Conversations


Dear Ellie,

I'm happy to report that you are still steadily improving.  Your mandatory breathes came down in the night and for the first time since you came off of the ET tube, some of the pressure added to your lungs has come down as well.  Your red blood cell count is low and as a consequence your heart rate is fast but the doctors are giving you a chance to make them yourself rather than give you a blood transfusion.  You are gaining weight quite nicely.

I think the past few days have been the longest period of time that I have ever gone these past few months without a lot of worry.  You are still stuck in the NICU 3 (which is considered the highest level intensive care unit) but I don't think you will be here for very much longer.  With my mind at relative ease, I've had a chance to sit back a bit and reflect.  This morning, I noticed that I've written you about 160 letters.  It's hard to believe.  When you finally go home with us I suspect we'll be too busy with you to keep up THAT kind of momentum, but I intend to keep writing to you in your earlier years.  That thought got me thinking though: at what point will I stop writing you letters and instead simply start having conversations?

5 comments:

  1. Ah, but you'll want to document some of those conversations! We all say, "I should write a book" about the wonderful things our children come out with. Maybe you'll be the one to actually do so!
    ~Debby

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  2. I am so very happy to read about Ellie improving. I never got a chance to reply to what you said about surfactants vs. steroids, and I'm really glad to know that she never needed to be on steroids. It is sort of amazing that they want steroids for only the anti-inflammatory effect, when they have a gzillion side effects.

    I tout Vitamin D like crazy, and the reason I do so is that in addition to its many other effects, it is crazy strong global anti-inflammatory agent. For my research, I was working on an natural autoantibody against apoptotic cells that shuts down inflammatory MAP kinase pathways by triggering a phosphatase, MKP-1.

    The really interesting thing (to me anyway) was the fact that this antibody worked the same way as dexamethasone (they both triggered MKP-1). Then I found a paper that said Vitamin D (at higher blood levels) also triggers MKP-1 and counteracts inflammatory signalling. It is amazing how nature has designed everything oh so perfectly, and how 3 different signals all have the same essential effect.

    Basically, as long as her vitamin D levels are high (above 30 ng/ml) inflammation should be somewhat well-controlled. I imagine it is higher in a preemie with so much to combat. Sorry for the overdose of nerdiness :)

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    1. Yeah SciChick, I agree. I think steroids have always been an easy go-to treatment for so many things specifically because of their broad effects. Personally, I haven't seen much in the literature on Vitamin D for preemies as it pertains to lungs, but I do know there is recommendations that preemies get vitamin D supplements for bones. I would expect they might see inadvertent effects on lungs too, but I suppose that would depend on the dosage and delivery mechanism.

      Either way, it would seem she has crossed that bridge and hopefully we won't be looking back!

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  3. The classical knowledge that vitamin D was mostly required for bone development has now been superseded by the knowledge that it is also required for optimal functioning and regulation of the nervous, immune, and endocrine systems.

    Low vitamin D levels are still strongly linked to lung infections in neonates and infants. Here is one on Vitamin D and the lungs.

    http://www.ncbi.nlm.nih.gov/pubmed/21419273

    Will get off my soapbox now, I promise :) And yes, I hope there is no looking back!

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    1. Interesting. Yes, I've constantly stressed about the idea that the state of medical literature is always a few years ahead of the actually applied science. I wonder often how Ellie's treatment would have been different if she'd been born just 5 years later.

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