Wednesday, June 27, 2012

Let Your Feelings Show

I mentioned way back here that I was going to write to OPG about how am actually in self protection mode and not an uninterested, pregnancy hating meanie. I had the whole e-mail composed with the help of some I  good feedback from my blog readers by a blog comment (thanks E!) and some e-mails from those who like to keep anonymous. I couldn't pull the trigger on it though and I went back to just avoiding her, which worked for a few weeks. Now two days in a row I was sitting next to her in meetings. One (today) was a lunch meeting where there were vendors in attendance we were invited down to be introed as "Here is X and X, you shouldn't need them, but if you do here is what they look like! Please eat these sandwiches!" Needless to say, 30 minutes of conversation between us ensued. Mostly, we just stuck to the joys of owning old homes (snort). Eventually conversation faltered and silence came over us. I had to ask about the baby "So everything ready for.. (look down at baby bump to delay)... baby?" Lucky for me she was good about it and didn't talk about the fun stuff (nursery! clothes!) and instead focused on being scared of labor. Who can blame her? So it went well, but I still felt shitty that I couldn't be as excited for her as I would have been before Blue Sunday. 

Once I came back to my office, I finally decided to hit send on this:  

I really just wanted to write so that you don’t think I’m a jerk. I probably seem uninterested in your pregnancy and like I have been avoiding you. Everything is still fresh from what happened to me but I am really happy for you and your husband. I'm just not to the point that I can talk about pregnancies at work. Please know that I was avoiding talking about it for no other reason than keeping my emotions in check in public… I like when people don’t think I’m crazy (easier said than done).
I know this is out of the blue, you don’t have to respond or anything. I just felt badly and wanted you to know.

And got back less than 10 minutes later (no exaggeration, it was 9 minutes)

I know I don’t have to respond and I completely understand where you are coming from. To be honest, I’ve tried to not say things in front of you, because I cannot imagine at all what you and your husband have gone through, but sometimes I forget. I have the utmost respect for you, and I’m glad that you are here at XXXXXX. You help make it that much easier to be here. You are very good people.
It was so nice. I was really glad I sent it and feel much better for it. I know that it can't clear the air completely. I will always be a woman who lost a child and she will hopefully stay one who hasn't.. or at least one who hasn't as late as I did. 
Try not to hide,
What you feel deep inside.
If you care, you must dare,
To be free as the air.
Earth Wind and Fire,  Let your Feelings Show

Tuesday, June 19, 2012

What Might Have Been

Thought on my Life Without a 2.5 Week-Old

It is strange now to think I would have had a 2.5 week-old baby if the chromosomes had behaved normally at conception that September day. I feel so far away from that life now. While I was in my imaginary pregnancy after termination, the feelings of what SHOULD have been were so strong. I knew the should-have-been pregnancy countdown, the days I would have had my baby shower, gotten the bags packed for the hospital, finished the nursery. Now, that is behind me and I can say honestly that I have no idea what my life would be like now had I had a birth instead of a termination. It is a HUGE relief.

After my due date passed, things really have been leaps and bounds easier. I feel that I have come out of a fog and finally am beginning to take stock of the pieces of my life. I am putting them back together and things are beginning to feel happy and whole again.

I hope that doesn't sound cold. Sometimes I wonder if I am an unfeeling person. I am really glad that I didn't do a Labor and Delivery termination. I think that holding my Blue Sunday would have made this part of the journey more difficult. That I cannot think in concrete terms about what it would be like to birth my baby, to hold someone that was created from the love between hub and me, is a blessing. I can't imagine the feeling of finally finding out if Blue Sunday was actually Blue or Sunday. I can't fathom that I would have already taken a squalling infant home from the hospital and began caring for it for the rest of my life. I wouldn't call that a relief, but it is a reprieve to not have to imagine that when I am still so far away from a take-home baby of my own. Today, after all, is:

Cycle Day 1

After (only!) one and a half days of spotting, here I am again on CD1. 28 days after I last started. I know that I wasn't feeling very hopeful about the cycle- with the procedure on CD10 interrupting the BD schedule- but I found myself incredibly disappointed yesterday. As usual for Sad Lizzy, I fought with hub before sitting on the couch and crying. In my defense, he was being crabby himself and I had just gotten home after a 14 hour marathon of work and class. Trying to look on the bright side, this was a much more normal cycle- O on CD 13, spotting starting Sunday morning on CD 26 and actually starting mid-day yesterday CD27. I wasn't as crazy hormonal and my cycle "feels" normal so far. All good things, no?

That said, I REALLY feel like this could be our cycle. I have a new OB approved BD plan, it is summer- when I am happy (and frisky), I should O over the July 4th weekend- my favorite holiday!  It happens to be one I don't celebrate with drinking, I can abstain without scrutiny and no one will know we're trying again. This has become important to me. It is hard though, no one in my group has children and everyone drinks socially- and we're together a lot. This isn't problem drinking- we have one or two with dinner or while watching the game, but more than I want to be doing. As soon as I turn down a bev, I'll get:

Friend "You're pregnant!?"
Lizzy "No".
Friend "But you think you are!?"
Lizzy "No"
 Friend "Then have a beer!"
Lizzy "I'm waiting to see if I'm pregnant but I'm not feeling hopeful"
Friend "But there is ALWAYS hope!"

Since everyone is really rooting for us to have kids, I get the eagle eye when we're together. If I don't drink the rumors - and questions- will start. Since, as I mentioned, July 4th is a holiday we aren't in the position to drink- at the beach for the weekend- at the Esplanade for the actual holiday- I won't have that horrible awfulness of a self-conversation when I am about to be faced with a drink.

Rational Lizzy- Just one is fine, says the OB.
Irrational Lizzy- I went to that concert the night before I found out I was pregnant with Blue Sunday and had several beers, that's why he was so sick  (Note to readers- we were SURE we missed the egg that cycle- due to travel we had last BDed 6 days before O. I might have one but never more than that)
Rational Lizzy- No that isn't it. Also, everyone is looking at you, if you pass they are ALL going to think you're pregnant. Just what I need. More gossip about my uterus.
Irrational Lizzy-I'm supposed to be the irrational voice! I shouldn't hang out with such alchies. Really that's the problem. No one here isn't drinking. NOT ONE PERSON. You're going to stick out like a sore thumb.
Rational Lizzy- Just one. 
Irrational Lizzy- I feel like crap.
Rational Lizzy-Me too.

Fingers crossed for a little March Leprechaun.

And try not to think about what might have been
'Cause that was then and we have taken different roads
We can't go back again there's no use giving in
And there's no way to know what might have been
No, we'll never know what might have beenLittle Texas, What Might Have Been

Wednesday, June 13, 2012

Thinking About Terminating for Medical Reasons - Trisomy 18 etc ?

This One's for the Girls

Who've ever had a broken heart,
Who've wished upon a shooting star,
Martina McBride, This One's for the Girls

This post is for the women who find themselves here as they contemplate terminating for a medical reason. Below is my personal thought process from when I was reaffirming my decision to terminate, suffering in the time between diagnosis/ setting the tx date and the actual procedure. For the record:

1) I am a lapsed Roman Catholic, so I had the guilt thing going on, but I was raised in a pro-choice household. I was taught that God-- he had a capital G when I was learning about him-- cared less about "the rules" and more about doing what you feel is right. Thank god for that.
2) Hub and I had determined before I was even pregnant that we wouldn't continue a pregnancy with a child with a low expected quality of life. We didn't feel it was fair to the child. We would take the doctor's advice on  the quality of life the child was expected to have. Because of this, when I got the 1:5 odds for trisomy 18 I looked it up (though I was told not to) and then knew I would be terminating if this was what our baby had. We were also 1:200ish for DS. If it was DS- which I was hoping it was when we got the bad odds- we likely would have carried to term as long as there were not major complications.

When I made my decision to terminate Blue Sunday it was based on what Blue Sunday would have endured in life. T18 in rare cases is survivable, but it isn't possible to have what I view as a quality life. Most kids who survive birth die before ever getting out of the hospital. They undergo painful surgeries if you can find someone is willing to operate on them, which is not a given. If they live to be more than infants- they usually never speak, walk, play or go to school. That is not a life I would want, so it was not a life I could have my child attempt to lead. I knew we would need heroic interventions: intubations, surgeries, medications. This didn't feel right to us.

I want you to remember that this is my opinion. I read a wonderful piece by Dr Lawernce Fenton, who works in pediatric palliative care (what a saint he must be!) talking about kids with trisomies where he related that parents of T18 and T13 kids say they hate the term "Quality of Life", he goes on to write:

How easy it is to assume we know what a good quality of life is for anyone other than ourselves....We perform ethical analyses assuming we truly understand how to apply beneficence or maleficence to a child with trisomy 18 or 13 or any other disorder in which there may be profound disability. As if the child can tell us what he or she is feeling. But we can do our best to assess and treat pain and discomfort. Smiles and laughter need no score pad. We know what they mean. The advice we give may often be centered around our personal notions about quality of life. (Fenton)
I believe that parents faced with the decision of termination or carrying to term a seriously ill child can and should make the decisions for their child on a whole. Yes, as Dr Fenton points out, a child with a trisomy (or NTD or Amniotic Band Syndrome or Turners or, or, or...) may smile and laugh one day, but they may not ever be able to tell you why. Only you can decide which is the lesser of two evils- living a life where your child cannot do activities of daily living (ADLs), or living one where you will never hold your child alive, much less see them simile and hear them laugh.

It was an easy decision for me, heartbreaking and awful, but I didn't agonize over it. I would never want to be in a situation where I can't tell someone what is bothering me, use a toilet, walk, swim in the ocean or go to school. That was the reality that Blue Sunday would have faced. Truth be told, I didn't want to live without seeing, holding and loving my child, but I had to do that. I deprived myself and not my baby- and I don't regret it.

Because of this, I chose a D&E. It was the best choice for Blue Sunday, hub and me.

I wish that which ever road you choose, you know that neither is "wrong" and you choose the one that gives you peace.

Fenton LJ. 2011. Trisomy 13 and 18 and
quality of life: Treading ‘‘softly’’.
Am J Med Genet Part A 155:1527–1528.

Monday, June 11, 2012

Fearing the "good"

I thought I posted the update to my Day 10 appointment, but it appears that I did not. Sorry about that.

I was really anxious going into the office. It was my first time going into the ultrasound room since I had my level II and amnio with Blue Sunday. The smells of the office upset me. I cried when they left me to get undressed. I was shaking when I was thinking about seeing my empty uterus when last time it was so full of a beautiful little baby. I didn't want to be back at the OB U/S room when I would have been in the hospital delivering my baby I want so, so much.

The appointment was a shit-show from the get go, even ignoring the mini-breakdown. I was running late, probably because I was dreading going to the appointment, then I went to the U/S office first but I was supposed to go to the office upstairs to take- drumroll--- a pregnancy test. I was waiting in the U/S office for 10 minutes when they realized I was supposed to be upstairs. I went up to attempt to pee in a cup (I had JUST gone). Obviously, I'm not pregnant. It is CD 10. So that was negative and we all went down to do the exam.

It was actually a hysteroscopy and not a hysterosalpingogram. Not 100% sure on the difference, though the latter uses contrast and an X-Ray and the hysteroscopy uses U/S and saline. They both check out the uterus and tubes. She asked me "Have you been trying this cycle"?  I hadn't really been, my CBFM wasn't at high yet and I knew I was going to get flushed out by the saline It seemed a little early anyway- CD10 and I was expecting O on CD15.  She recommends every other day from 7 days before expected ovulation. She referred to it as the most "efficient". My tubes are clear, my ute is "beautiful" according to the OB and I had a "perfect" follicle!

Wouldn't that be cool if I get pregnant this cycle, and I've seen the egg that becomes NO MORE AND NO LESS than half of the genetic information of my first take-home baby? I'm not holding out much hope of this, we got a late start on BD, and I still have ~20 pounds to lose. But it would be cool.

But I digress...

Not going to lie, I'm a little upset the scan was so good.

That's crazy, right? I'll explain.

Last time I had a good U/S was 12/27/12- The day after I got my 1:5 odds. The day of my amnio. 2 days before I heard my baby would never be born, get in trouble, call me mom, graduate, marry and have my grandchildren. The U/S was nearly perfect. Blue Sunday's femurs were short (by a week), but Chris and I are not tall people, so we thought may be it would be okay. Obviously, it wasn't. 

I now have this deep seeded fear of "good" U/S. I don't trust an U/S and I don't quite believe their diagnostic power. It isn't that I wanted the results to be "bad", it's just that I don't feel relief from the "good" news.

Welcome to the crazy world of a BLM.
I'll end this on a funny.  So after the hysteroscopy I'm told I should sit up but that I should be careful, since the saline would leak. I mush have gave the OB a look, because she added "It won't gush, but you'll notice" Then she handed me a pad and insisted "I'll need it" and put a few of those doggie wee-wee pads under me. I sit up and they walk out. I felt some leakage and waited for it to stop, the stood to get my panties, which were across the room, so that I could put on the giant pad and go home. I got about halfway and gushed all over the floor. ALL OVER THE FLOOR. It was terrible. I look around totally panicked and see the paper blanket thing they gave me to wipe myself down and I use that to mop up the floor. I start laughing feeling so absurd. I'm naked from the waist down, wearing my work clothes on top. Standing in this room where I had an anmio that sentenced my Blue Sunday to death. I have just find out everything is "fine" inside- only I can't get pregnant. Now I am gushing all over the place moping it up with a paper blanket. So I'm laughing- but that makes more gushing. And I am terrified they will walk back in and see the unsanitary mess I'm making.

Word to the wise, If you're going to have a hysteroscopy, keep your undies next to you, and use the pad :)

May God give you...For every storm a rainbow, 
for every tear a smile, 
for every care a promise and a blessing in each trial. 
For every problem life sends, a faithful friend to share, 
for every sigh a sweet song and an answer for each prayer. 
Irish Blessing

Friday, June 1, 2012

Gone Too Soon

How have I just found this song? No other words from me-the lyrics are enough:

Gone Too Soon
Today could've been the day
that you blow out your candles
make a wish as you close your eyes
today could've been the day
everybody was laughin'
instead i just sit here and cry
who would you be?
what would you look like
when you looked at me for the very first time?
today could've been the next day of the rest of your life

not a day goes by that i don't think of you
i'm always asking why this crazy world had to lose
such a ray of light we never knew
gone too soon, yeah

would you have been president?
or a painter, an author or sing like your mother
one thing is evident
would've given all i had
would've loved ya like no other
who would you be?
what would you look like?
would you have my smile and her eyes?
today could've been the next day of the rest of your life

not a day goes by that i don't think of you
i'm always asking why this crazy world had to lose
such a ray of light we never knew
gone too soon, yeah

not a day goes by, oh
i'm always asking why, oh

not a day goes by that i don't think of you
i'm always asking why this crazy world had to lose
such a beautiful life we never knew
gone too soon
you were gone too soon, yeah

and not a day goes by
that i don't think of you
Daughtry, Gone Too Soon
[- From: -]