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.  :)

Monday, January 23, 2012

When Life Gives You Lemons: Part 2

It started like any other..  A nice day to go with your dad to the ballpark to watch the hometown team..  I knew I wasn't going to have many more chances to do that so I wanted to get it in while I could.  My dad and I enjoyed a great day at Fenway on the Sunday of Labor Day weekend 2007.  My wife, completing her 28th week was just as happy to relax on the bed with the dog and sleep.

We both went to sleep fairly early that night knowing we both had the day off the next day for Labor Day.  Plus, it was a long day for me traveling to Boston, the game and getting back.  Even though it's only an hour away, an hour back and the game was 3 hours it turned into an all day thing..  Always does.  I can honestly say it was one of the most sound sleeps I had been in in a long time.  And then, around 1am, poke poke..

"Um, honey, I think I'm having contractions".

"Huh?"  Oh, ok I'll get the watch and the paper.  Having finished the birthing class about 2 weeks earlier, I knew what my role was.  We time contractions for about 30 minutes and they are all over the place.  My wife just doesn't feel right and wants to call the doctor which was fine.  She calls the local hospital which is affiliated with our hospital in Boston and who does she get?  The one doctor out of the 6 she had seen that she didn't like. That doctor wanted us to come to the closer hospital.  When my wife asked what would happen if she needed to deliver (remember she just finished her 28th week) the doctor said well they would deliver there and then send the babies to Boston.  So when she tried to confirm that we would just follow the ambulance after, the answer was no, you'll stay here..   Well, then that was a big fat no thanks.. we'll just go to Boston.  It's 2am and I'm sure there won't be any traffic..  we'll take our chances..

So I quickly packed a bag (thankfully) and we started off to Boston.  Unfortunately, the only way we knew that time to go was Route 9, which is ALWAYS under construction..  So someone who was having contractions and had to drive in a car going over unevenly paved road with exposed sewer caps, she was less than thrilled.

They say it never happens like it does in the movies..  I'm calling shenanigans..  that's EXACTLY the way it happens..  We pull up into the emergency zone, and I get her out of the car screaming, "I need a wheelchair and a doctor!" We wheel her into the hospital and fill out endless forms before we can enter..  We finally get brought into an area to get checked out by a doctor.  While my wife is being tended to, I'm being asked a whole host of questions..  I think I answered all of them, I really don't know..  I do know the nurse was very impressed I knew her social security number (my wife's, not the nurses.  That would be have awkward). Then, I heard a doctor say "I can feel a head.  we need to get you the delivery room stat!"  Ok, I don't know if she said stat, but I'm keeping with the whole movie theme..  They literally threw scrubs at me and pointed me to a bathroom to go change and meet them outside. 

Do you remember the scene in Pulp Fiction after Vincent Vega's date with Mia Wallace where he's in the bathroom contemplating whether he should sleep with her or not all while she's OD'ing on the super crank he had in his jacket?  That was kinda the scene here where I'm getting ready with these scrubs asking myself in the mirror if this is really happening or is it a dream..  How could they be here already we still have 3 months before they're supposed to be born, we're not ready, we don't have anything, etc.. While it seemed like an hour it was probably only a minute or so.  I came out of the bathroom to an empty hallway.  No one.  I thought that can't be good.

Finally I find someone that said my wife needed to be taken to the ER immediately and they couldn't wait.  I got directed where to go and by the time I got there, they had already closed the doors and unfortunately, I was not allowed to enter.  So once again, like in the movies, I am sitting there in the hallway pacing around by myself wondering what was going on.  Then, like an angel I hear a familiar voice, "Ben?"  Now, my wife always complains that I know someone wherever we go.  I ran into a fraternity brother on the plane to Hawaii for our honeymoon for example.  There isn't a sporting event, concert or random place we go to that I don't see someone I know.  However, this time I think she would be happy.

"Kristin?"  It was an old friend of mine from growing up who happened to be working that night and was heading into the ER where my wife was giving birth.  It was her job to make sure that once born the babies airways were clear and they were breathing well.  Let me tell you, not being allowed to be in that room was the worst feeling ever.  After hearing about everyone else's experiences being in the delivery room, being together, taking pictures and video, to know I wasn't going to get to do that was deflating.  I knew these were the only children we would have which means I will never get to experience it.  A hole that will always be vacated.

Thursday, January 19, 2012

Da Dun.. Da Dun..

The boys have been asking to go to a Bruins game since about the middle of last season..  It was about the time when they started really noticing sports, being able to recall logos and such.  While tickets are not as easy to come by as they used to be, I still managed to get us 4 tickets so the boys could go to a Bruins game. However I thought it might be a good idea to take them to a Worcester Sharks game at the DCU Center in Worcester as a primer.  It's not that far from us and this past Sunday just happened to be Pucks and Paws day.  That's right, minor league hockey AND you got to bring your dog!  Half the cost of the dog ticket went towards the Worcester Animal Rescue League so it was for a good cause.  And we got to take Cadi to a hockey game.  How often does that chance come around?

So off we went all bundled up and got into the car.  I had to lift Cadi into the back of Amy's car (not happy about continually having to do that, but that's another blog for another day).  We got to the arena in plenty of time and walked around a bit to see all the different dog-related booths, activities for kids, etc.  So far, so good.  Cadi made some friends with some new dogs as only dogs can (why isn't it that easy for humans I will never know).

We headed down to our seats and they were great!  2nd row from the glass right near the face off circle!  The boys were going to be so excited they were so close to the ice!  They had designated certain sections for dogs only so you were assured not to be bothering people with your dog.  However they said nothing about bothering other people with your children!

We got down to our seats and Max settled right in and was raring to go..  I took Cadi with me, walked around a bit, sniffed some dogs, etc..  As I headed back I see (and hear) Douglas having a meltdown.  He was just beside himself.  Wailing, screaming almost, didn't want to take off his jacket and he wanted to sit on my lap.  So he sat on my lap and then the music came on and he freaked even more!  He covered his ears and at this point was almost inconsolable.  He wanted to go to the top row of the arena.  I told him we could only go as high as this section so he said ok.  We went to those seats and he was still crying and didn't want to be there.  He wanted to go outside (onto the concourse thankfully because it was about 10 degrees out).  So I took him out onto the concourse and as we walked he started to settle down.  We got a frisbee for Cadi (more than likely to be broken the first time she plays with it), some nerds in a box for him and he seemed to be ok.  Amy texted and said Max was requesting a pretzel.  I could have gone for a pretzel too.  So of course as I said this to Mitch, he wanted pizza.  Of course you did.

So there I was trying to juggle 2 pretzels, ketchup (for Daniel) and mustard (for me), 2 waters and a piece of pizza all the while trying to hold Douglas's hand so he didn't run off.. And before you ask, no Amy didn't want anything.  I made sure to ask.. 

We somehow made it back to our seats with everything intact and gave Daniel his pretzel, ketchup and water.  We sat down and we were in our seats no more than 5 seconds before Douglas started up again..  So I took Douglas , my pretzel and mustard along with my water and headed back up to the top row of the section.  This time I needed to know what his deal was.

I asked him, "Mitch are you scared"?  He told me he was and I asked of what?

He said "the sharks".  I said what shar..  Ohhhhh..  For some reason, Douglas was under the impression that there would be REAL sharks on the ice and he was afraid of sharks apparently so he kind of freaked out..  Trying to keep my composure and not laugh out loud (or LOL as the kids say) I told him they aren't real sharks and explained what team nicknames and mascots were.  He seemed to understand and realized they weren't real sharks, but the music and PA announcer were loud anyway so he wanted to walk again.

I said that's fine, but I wanted to finish my pretzel first.  The words weren't even out of mouth before he was stuffing the pretzel into my mouth, making me eat it so we could leave.. I have to admit, the kid is funny..

By now, the 1st period has ended and we have been there for a total of about 1 hour and in my seat for about 5 minutes.  After I got a text from Amy telling me that Daniel was asking when it was going to be over, we decided it was time to pack it up and head home.

While the Pucks and Paws Worcester Sharks game might have been a failed experiment, I'm hoping for a much better result at the Bruins game.  As long as Douglas doesn't find out what a Bruin is..

Tuesday, January 17, 2012

When Life Gives You Lemons: Part 1

I can't stand that expression..  It's not always so easy to just "make lemonade" out of lemons.  Sometimes life gives you something for which you are not prepared, nor could you ever be.  I would put having twins up there at the top, at least for me.

On April 2nd, 2007 we went to my wife's doctor for a check up.  We saw the nurse who was performing the ultrasound.  As we watched the computer monitor, she nonchalantly said "so, you know you're having twins"..  I can't even put a question mark at the end of that sentence because in reality, it was not a question.  She was thinking she was confirming something we already knew.  Oh she could not have been more wrong..  The shocked expression on our faces was something out of a horror movie where the soon to be victim just realized the killer was inside the house..

"Wait, what?" I asked?  Being April 2nd, where the previous day was April Fools Day, I of course asked "this isn't some belated April Fools joke is it?  Because if it is, it's not really that funny".

The nurse then said, "oh no, see that little dot right there?  That's Baby A and then see that little dot right over there?  That's Baby B".

I will be honest..  The first thing that went through my head was not excitement; it was a dollar sign. Thousands of them.  2 mouths to feed, 2 kids in diapers, 2 kids in daycare, 2 Bar Mitzvah's!!!  I really don't recall when it set in..  Not sure it truly has.

The next few months which should have been full of joy, shopping and excitement were some of the longest months of my life chock full of doctor's appointments.  I feel like that's all we did.  Doctor after doctor and test after test. With my wife not being very big (5 feet or so) and carrying twins, obviously the doctors wanted to monitor her closely.  Oh, and the fact that she had had multiple back surgeries, including 2 spinal fusions, didn't exactly help matters.

Then, at about 20 weeks or so we had an appointment.  The ultrasound revealed a two-vessel cord on Baby B (Normal would be 3 vessels).  Baby B also had a distended stomach.  Now either of these things alone is no real cause for alarm.  However the two characteristics together can be a marker of certain birth defects such as Down Syndrome.  The doctor then tells us that we should seriously start thinking about considering selective reduction.  And yes, it's exactly what it sounds like.  While an amniocentesis could potentially confirm a diagnosis, at this point it would be too dangerous for the healthy twin and it would not 100% confirm anything.  So really, we had nothing to gain from doing the procedure and everything to lose.

She says she would like to see us next week to discuss, but we were going away to North Carolina for vacation, our last before the kids. We tell her we are going away and then she tells us she is on vacation the following week so she can see us when she gets back.  What?  We're supposed to now have this life-altering decision weighing on us for 3 weeks, including our vacation?  She seemed very indifferent to the situation and saw no immediacy in a resolution.  I guess in retrospect we could have canceled our vacation but the stress of the situation was really baring down on us and we needed this break for whatever sanity we had left.  Regardless of what your beliefs may be, when faced with that type of decision it is not as easy as you think. You start weighing things you never thought you would weigh, speak words you never thought you would speak.  But after some discussion, the decision was clear. Already knowing we would not be selectively reducing the twins, we decided it might be best not to go back to that doctor and start seeing one in Boston where the twins would be born.  Though it would be a much longer drive and require more time for appointments, we felt it would be well worth it in the long run, and we were right.

We saw this fantastic doctor at a hospital in Boston and were told we were having a boy and a girl.  We were elated!  1 of each and we're done?  Oh this was great, we could not have been happier..   We had names picked out and everything..  Then a few weeks later, at another ultrasound (which seemed to be a weekly occurrence) the doctor asked "what did I tell you that you were having"?  We told her she had said a boy and a girl..  And the doctor said something I will never forget "Um, you may want to stop telling people you're having a girl".  Wait, what?  The reason for the confusion was that Baby B was not cooperating very well in opening its legs so even a 4D ultrasound (which I HIGHLY recommend if you can, very cool) could not determine the gender for sure.  Another reason was that there was a possibility of the fetus having ambiguous genitalia.  One could understand the lack of confidence in the gender with these two factors. 

More doctors and more meetings with geneticists, urologists, counselors and on and on and on it seemed..  The doctors also wanted us to rethink having an amnio.  We believed it was more to satisfy their curiosity about the gender of the babies.  However, the cons far outweighed the pros.  There was no guarantee that the amnio would be 100% and there was a good possibility that the healthy baby could move, puncturing its sack and sending my wife into early labor.  That was certainly not an option (at least at this point).