Tuesday, August 20, 2013

Intuition is power

With all of the talk about viability and  end of life decisions, I can't help but continue to return to intuition.  As I have said before, we had a long time to prepare for Virginia's early birth.  We had the time to research and the time to ask the "right" questions.  We had the time to pour through the statistics.  We received some really harsh and unsympathetic counseling and some really caring and factual counseling as well.  In the end every decision was our decision and our hearts and our intuition played a key role in making those informed decisions.

At the risk of sounding more than a little hokey, there was a lot of intuition and luck that saved our child.  It is something that is often undervalued in the obstetrics and neonatal world.  It is something that many first time mothers and first time parents brush to the side because they don't want to seem foolish.  I believe in all things good medicine - preventative care, the best specialists, vaccinations & medications, but I also believe in trusting my gut, knowing my body, and acknowledging that "feeling."

My intuition is what alerted my doctors that my pregnancy and my baby were in great danger.  There was no bleeding, no discharge, and no time-able contractions, but there were a few braxton hicks contractions and a feeling that something may not be right.  Sure, I could have walked away from the ultrasound feeling foolish and like an alarmist but instead we realized that I was silently and painlessly dilating at 21 weeks.

Counseling, research and intuition is what we relied upon when talking about resuscitation.  At 22 weeks the neonatologists asked us to choose the gestation for resuscitation.  That statement grossly oversimplifies the conversations which included options for comfort care, survival and disability statistics,  and delivery & resuscitation scenarios.   We chose a date based on that information and our own intuition.  I knew my due date was off by as many as 4 days in the bad direction.  I knew we had to take this into consideration.  We would later find out that at 650 grams, Virginia was most likely born at 24weeks 3days or so rather than the 25weeks 0days on her official stats.  In the micropreemie world hours can make a difference.  A half of a week is like changing the book.

5 days prior to delivery (at 24 weeks 2 days officially and 23 weeks 5 days in my head) I was transferred to labor and delivery because delivery seemed immanent.  At that time we consented to the c-section and asked for resuscitation using all medical options.  We did not even entertain the idea of letting her "declare" herself in the delivery room.  That decision was not made just with intuition alone but with knowledge of the potential outcomes, the confidence in our doctors, and the faith that we were making the right decision.   Upon delivery she was blue, she did not cry, and she had no drive to breathe, but she was kicking.   Her neonatologist that day gave us the statistics for her survival if she made it through the first 24 hours and then again if she made it through the first 72 hours.  After day three he was quite frank with me.  He said bluntly "I was not very impressed with your daughter at delivery, but she has been pretty impressive since then."  I immediately understood and was both relieved that she had crossed some majorly scary days and that we also did not let her "declare" herself in her first moments.

None of this is to say that intuition is everything.  I've followed my gut and have been wrong, but I have never regretted it.  The only regrets I have had on this journey have been the times that I didn't trust my instinct and that I didn't speak up for myself or for Virginia.

If I could amend my letter to doctors, nurses, sonographers, anesthesiologists, therapists, etc  I would plead with them to not only appease it but also encourage their patients to trust their gut and to listen to that "feeling."  Intuition can be a powerful thing.  Knowledge is power, but it is not derived from statistics alone.

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