Rock Fists

Rock Fists

Monday, January 30, 2012

When Life Gives You Lemons: Part 3

This is where the movie part ends. There were no flowers or cards or cigars.  I sat alone in my room for a couple of hours, but it seemed like an eternity.  Unable to see my wife or my children I had no idea what was going on.  Occasionally a nurse would come in and ask if I needed anything like water, etc..  While it was appreciated, it certainly wasn't going to help.  It was the middle of the night, well technically now very early in the morning so we weren't going to call anybody.  We had already made the decision that evening on the way to the hospital that if we did have the babies that we would wait until the morning to call and not have any one come that day.  It was going to be hectic enough without having people around to ask questions we just didn't know the answers to.

Finally I was able to see my wife which was nice..  She had done such a great job.  I was so proud of her.  But we were so concerned about the health of the babies that we really had no time to think about anything else.  Because they were so premature, born at 28 weeks and 1 day, they were immediately moved to the NICU (Neo-natal Intensive Care Unit) where they would be hooked up to more wires and tubes than I would ever see in my entire life.  You couldn't even see their little bodies as they were all covered with gauze, wires, tubes and numerous other devices that were helping them stay alive.  They even had little blindfolds over their eyes to shield them from the bright lights of the NICU and their isolettes.  One funny thing though, the diapers they were wearing, because they were so small were called WeePees.  I couldn't make that up if I tried. That's what they're called..  Pretty funny..

As I mentioned, we were originally told we were having a boy and a girl.  Then, at about week 24 or so, we were told to stop telling people that. Then, after delivery, we were told we had a boy and a girl again.  So we guessed the original genders were correct.  However they were telling us not to say anything to anyone about the sexes until we had a conversation with the doctors.  We were ushered into a conference room and suddenly were standing in front of about 12 doctors and specialists.  We had a feeling this was not going to be your normal conversation.

We could not have been more right.  They proceeded to tell us the reason why they could not give us the gender of one of the babies.  It had been born with a chromosomal genetic abnormality called Mosaic Turner Syndrome.  A chromosome analysis test called a karyotype determined the diagnosis.  Some of the characteristics of Mosaic Turner Syndrome are short stature, a high palate making it difficult to eat, coarctation of the aorta, and ambiguous genitalia (the baby had all 4).  When the babies' chromosomes were replicating, early on there was a mistake.  A genetic abnormality if you will.  One of the X chromosomes did not pair up with a Y, it was left blank.  That mistake replicated all the way down so the baby only had 15% XY and 85% XO.  Therefore, we had a decision to make.  We had to decide the gender of our child.  Was the baby going to be a boy or a girl?

Now there are some decisions a person makes that defines who they are going to be.  For example, what college you go to or don't go to, what job you take or don't take, who you date and perhaps eventually who you do or do not marry.  However there are very few decisions that one makes that defines their life.  This would be an decision that defined mine.

We met with teams of doctors including genetic specialists, endocrinologists, urologists, among others. Tests were run and it was concluded that the baby was in fact making testosterone, however was not making  enough. Based on the absence of any female indicators and all signs pointing to male indicators, the decision was made that the baby would be a boy.  Because the normal reproductive system had not fully developed, numerous surgeries would need to be performed in order to create a functioning reproductive system.  These would happen over the next few years.

Now that the decision was made, it was time to name the babies.  We had already had 1 boy name picked out because we knew were having at least 1 boy.  However when we were told to stop telling people we were having a girl, we knew we should have a second boy name just in case.  Thus, Daniel and Douglas were officially named and soon became household names.

This is by far not the end of the story as this is the ever-evolving tale of the Twins of Anarchy.  But writing this particular blog was quite cathartic for me as I've told the story before, but never put it down on "paper".  I do wish I had started this back when I found out we were having twins.  Well, there's always next time..  Eh, I don't think so.  :)

2 comments:

  1. Very difficult position to be put in, to make a decision that will define a child's life. You guys are great people, and your boys are so lucky to have you.

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  2. well you were a huge part of it so thank you for being there.. it was hard and it's funny you never think you are going to make a decision of this magnitude when you are younger..

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