Saturday, June 29, 2013

Doing everything differently

June 29, 2013
Four months, two weeks and one day

The question is upon us whether to run the MaterniT21 test for this pregnancy.  I’ll be ten weeks in just a few days and that’s the earliest the blood work can be done.  Joe’s chances of having Trisomy 13 was 1 in 10,000.  Depends on where you look for the information but basically we have a slightly higher or exactly the same risk of this baby having the same chromosomal abnormality.

I didn’t test for anything during my pregnancy with H.  The things they look for and the invasiveness to find out things we can’t fix or control just wasn’t work the risk.  The only reason we tested with Joe was to determine exactly the cause of his list of super powers.  It gave him a life expectancy and a label so the doctors could decide if he was worth operating on.

The reassurance the test could provide would be nice.  I don’t expect the exact same thing to happen.  That’s what most fears are based on - not new things that may happen but old things happening again.  Would I even care if this baby has Down Syndrome or Edward’s Syndrome?  Only to the extent of the co-existing possibilities that go along with Trisomy 21 or Trisomy 18 but like the multitude of conditions that people walking this earth have, those are things I can live with.  I could even live with Trisomy 13. Worst case scenario, I would just want more time than I had with Joe.  Even if it was to get beyond 25 and a half weeks pregnant.  Just more time.

On one hand there is this person that I would like to be who can manage pregnancy and does all the admirable things – no tests, no anxiety, absolute faith in everything working out.  There is another person that lost a baby just four and a half months ago and was already kind of a basket case and has had everything I knew turned upside down.  I want to hear the heartbeat every day and see an ultrasound scan every week and find a way to keep control in an uncontrollable situation.

The urge to do everything different is strong.   So is the urge to change NOTHING for fear of inviting a jinx.  I know that makes me somewhat of a nightmare as a patient.

A few weeks ago I had an appointment for a due date and viability scan.  It was for late in the afternoon and by ten in the morning, I was climbing the walls.  I called my OB and asked if I could get an earlier appointment.  It was a double stressor because the appointment was where I went to see Joe that last time not moving on the screen. 

The secretary didn’t miss a beat.  She said it was out of the question and because it wasn’t an emergency she wasn’t even going to ask the doctor.  I wanted to go to a less equipped facility but the advice from this community college graduate was that she thought the doctor would want me to ‘start off right this time around.’  As though a chromosomal abnormality was something you can blame on a parent.  You can’t.  It occurs just after the sperm and egg meet and divide.  It’s THAT early and it’s nobody’s fault.

I hung up on her and called back to get a different secretary who went straight to the OB and had an appointment for me in a few minutes.  As we were walking out the door, the first woman left me a real nice message saying I could call her back unless I had hung up on her purposely.

I have to admit, I couldn’t feel my toes or fingers as I called back.  I explained to her that I was very anxious and she could have at least humored my request and until she lost a child she was in no position to judge.  She was yammering over me about wanting an apology.  And I hung up on her again.

My husband called back and spoke to her as gently as he could manage.  He explained that her inattentive, dismissiveness was just adding to my anxiety and if she was going to be a problem we would have to go to another care provider.  She told my husband she expected an apology from me and one would not be forthcoming from her.

After my ultrasound went beautifully and the technician patted my arm and said she understood my anxiety and was so glad to fit me in early to reassure me, we got home and called the office manager.  And the doctor.  Nobody seemed to want to take responsibility for the person in customer service who was giving out medical advice and refusing to even entertain a request from a paying patient.  On a side note, in my twenties I went to community college and worked as a secretary for five years.  I have respect for the job but I knew my role.

The best advice I’ve ever gotten was from someone who had lost a child and he said all you can do is try and control the things you can control.  The rest you just have to let go.  You can control what you eat, what you wear, where you go…so find comfort in those things.

Grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
And the wisdom to know the difference.

You’ll notice this does not request serenity from any particular denominational being or spirit or entity.  Just to whomever or whatever may grant such things, please send me some wisdom.  I can work with that.   I’m still not really speaking to the almighty I grew up trusting.

As for prenatal care, leaving my current practice is terrifying.  It truly feels like my OB was instrumental in me not dying during pregnancy.  As though he is the only person with the knowledge to get a baby safely from within my womb to the outside world.  Despite the fact that we are actually one for one.  I have one healthy baby and one that died.  Nobody’s fault but also to nobody’s credit either - unless I can count all the nurses along the way and I may have done some of the work too.

Something else I have to consider is how empowered I am at that practice.  After delivering my second child, I should feel as though I could deliver at home on the kitchen floor with a suction bulb and a pair of safety scissors.  I know what to do. Is it at all healthy to feel such a dependency on a doctor?

I have a real issue with loyalty.  I expect it from people and I try to offer it to people I care about.  I felt so let down that nobody stepped up and said I know you’re anxious, we’ll do whatever we can to alleviate that.

Maybe there’s not a practice out there who would take me on with all my hang-ups and questions and demands.  Oh well.  I did say I could deliver in the kitchen.  It’s worth trying to find a place that will listen and coddle me.  I am, afterall, growing a tiny human.

Tuesday, June 4, 2013

Irish twins and Irish blessings

June 4, 2013
110 days

Since my last post I have survived Mother’s Day and my due date.  It’s been an upside down month.

Mother’s Day we went to the zoo in Boston.  I figured Joe would have wanted us to do something special that maybe we could not have done had he survived.  Perhaps that’s the wrong way to look at it but that’s how I got through the day.  Joe would have been very, very sick and we would not have brought him home from the hospital.  My partner and I would have been trading off time to be at the NICU and taking care of our son H.   There would not have been trips to the zoo two hours away - especially if we had met Joe and had to watch him die.  I barely made it through his stillbirth.  So my gift to Joe and to H was to do something special with our time together.

I expected seeing the other families with multiple children would do me in but I stayed focused on us and took lots of pictures and listened to H’s attempts at saying all the animal names.  He’s talking a lot these days and we are teaching him sign language.  He spreads his arms real wide and says “This much” when I ask him how much we love his brother Joe.  He gets it.

My due date was a tough day.  It was tough weekend. There is a rational part of me that knows how much Joe would have suffered.  There’s the rest of me that just misses him.  It will never be better or fixed.  The length of time since we lost our son will just keep growing.

I’m so glad I got that last video ultrasound.  I had a lot of anxiety waiting for the appointment and worried that he wouldn’t make it long enough for me to get those images and pictures.  Normally you get those things at the twenty-week ultrasound but the technician had stopped recording after a few minutes and there were no pictures.

Sometimes those premonitions haunt me.  It was like I knew.  That first week after Joe died, I had waves of déjà vu.  It was flashbacks of the birth and doctor visits but it felt like I had seen it all before and I wondered why I didn’t see it all coming.

I didn’t return the clothes I bought for Joe that week.  I have all of H’s clothes saved but I wanted Joe to have a few new things too.  I thought if I had to return it, it would at least give me something to do so I wouldn’t sit around crying all the time.  Then one day, I had a burst of ‘okay, let’s deal with this grief today’ shortly after Joe passed away and when I put my hand on the first hanger I felt the room start to tip.  It’s all packed away now. 

There have been a couple of times that I felt like Joe arranged something for me. 

Last week we stopped to look at an apartment and a neighbor came over to our truck and we had a wonderful conversation.  Something kept pushing me to ask her more questions.  She was just lovely - telling me all about her grandbabies and all the new ones on the way.  I haven’t been able to talk about anyone else’s pregnancy but that evening, I kept asking for more details.  Shortly after driving away we stopped at a light and the truck ahead of us turned left while someone else was running the red light and had to screech to a stop about a foot from the guy’s passenger side.  A few seconds in the difference, we would have been stopped at the light, first in line to make the turn.

And then another gift - I am six weeks pregnant.  I took five extra pregnancy tests to confirm because I am still completely in shock.  I didn’t think for a second we would be so lucky. We took my first pregnant belly photo on Joe’s due date and posted it on Facebook.  I know it’s too early to announce it and so many things can go wrong but unless you’ve been where I am and know the mix of grief with anticipation, terror with joy, anxiety with hope, there is really no room to judge.  Or maybe I’ve just learned that life is too short to listen to the judgments.  I know I need the support of my friends and that is okay.

My due date is three weeks before the date Joe left us.  I am carrying his Irish twin – which is actually supposed to be a derogatory term, but I see it as a blessing.  There’s something about shamrocks and all things Irish that keeps me connected to Joe.  This blessing gives me so much comfort.  We will meet again my sweet Joe.

An Irish Blessing
May the road rise up to meet you
May the wind be always at your back
May the sun shine warm upon your face
The rains fall soft upon your fields
And until we meet again
May God hold you in the palm of his hand.

You never know who's watching :)
Mother's Day at Franklin Park Zoo.