Thursday, March 27, 2014

Survivor's Guilt


Dear Ellie,

Today is a good day.  Again, over night, you made huge leaps.  By respirator metrics, your lungs have made more progress in the last two days than they have in the prior two months.  I remember just a month ago, I'd be amazed if you improved by two mandatory breathes in a day or five in a week.  But in the last two days?  You went down by 20.

It seems like years ago, but I can remember the day you were born so clearly.  The things that I thought and things that I feared are as clear in my head as they were then.  A 50/50 chance of survival and, if you survived, a profoundly high chance of being afflicted with SOME kind of problem.  I remember reading through the medical literature on Pubmed.  There were pages and pages of problems.  More than likely, at 24 weeks, you'd get some tragic combination of them.  Yet we dodged brain bleeds and decomposing intestines and brain lesions and holes in organs and septic blood and severe Retinopathy and many, many others.  When your lungs failed to improved, we thought "okay, so here is your problem."  We felt lucky that it was ONLY chronic lung disease.  But now, even that may be milder than we anticipated.  From the beginning, by my calculations, you only had somewhere around a 5 percent chance of escaping all of the things I listed above.  It seemed like such a tiny percentage, at the time.  "Your mother and I don't dwell within that 5 percentage point margin of error," I thought.  "Not on the good side, at least."

There are still potential problems ahead of you, but they are less likely and less severe.  You might have feeding problems.  You might still have partial deafness from all of the antibiotics you were on.  Even with those problems, though, it would still feel like we dodged those 100, tiny baby sized revolvers I mentioned in earlier letters.  Those baby sized revolvers pointed at your isolette.

In a way, being surrounded by scores and scores of babies of your gestational age that weren't so lucky makes me feel guilty.  Did you deserve this good fortune?  Did we?  It's easy to believe in "miracles" when you ignore the vast number of other babies that weren't so lucky.  Those babies that the hand of good fortune didn't tap on the forehead.  A miracle wouldn't be a miracle if EVERY baby were so fortunate, would it?  For one baby to be considered a miracle, many more must not.  Still, we'll take whatever good luck happens to come your way. 

4 comments:

  1. Could it be, that the miracle is Ellie's? Of all the parents of all the 24 week preemies, you two have been the most vigilant, the most knowledgeable, the most caring, and by far the two of you have been there practically every minute to ensure that the hospital staff were just as vigilant. I'm not surprised she's doing so well. If I were a preemie, that's the kind of advocacy I'd want, more than anything else!
    Grandpa Smith

    ReplyDelete
    Replies
    1. Like PawPaw said, I feel the same way and have felt this from the start. You two are there as much as any couple possibly could be, chugging energy drinks (I forgive you for this), pulling all nighters, doing research and observing everything that happens during those crucial milestones. The first thing that comes to mind is you've increased her odds of success.

      Delete
  2. I know you don't like miracle stories, but I think the reason people do like to try to tell you them is that you DO come across all the very doom and gloom stuff in the beginning. Especially when you Dr Google anything. And to expect all the bad things to happen is just as unrealistic as expecting only good things to happen. It has and it can go both ways.

    ReplyDelete
    Replies
    1. Yes, I agree, the tempered perspective involves considering the good and the bad. I think that Rani and I both consciously try to focus a little bit more on the bad, that way we can reconcile those possible outcomes sooner in our minds and be prepared. If there is a good outcome, then we are pleasantly surprised. For instance, we both assumed the worst when it came to Ellie's lungs, so we were ready with the research and ready with a decision for when those possibilities arose. Her lungs ended up not being such a big, long term problem like we thought so it was almost like a little "bonus."

      I see very often people focus only on the good and end up far more devastated than if they just remained neutral. It's probably much better to accept the possibility of disability now when we are only partially involved with her care rather than confront it 2 years down the line when she really, really needs us.

      Delete