Friday, January 10, 2014

Oh, pregnancy (or, don't believe everything they tell ya)

This was my third pregnancy.  And it was different in every way from my previous ones. 

Charlie's was easy.  No sickness, no pain, just some aversions to food (chicken) and smells (everything).  We went straight to our 39 week schedules C (breech) without any problems, and not even a hint of a contraction, despite my working until the day before.

Isaiah's, if you know the story, was the same as Charlie's except I couldn't get enough spicy food, but he was heartbreakingly taken from us at 19 weeks, when I delivered him VBAC, stillborn, tiny and beautiful. 

Because of my loss, this pregnancy was under the microscope from day one.  Or, I should say, week three, because that's how early I found out.  We waited two full years for this to happen, and made a decision not to wait to tell people. 

We know first hand that the a pregnancy can end in a moment, and we'd waited until almost 17 weeks to tell people we were pregnant with Isaiah, and he was gone two weeks later.  Because of this, not everyone understood just how intense our loss was, thinking we were just barely pregnant (which, in and of itself is a big deal...), and we felt robbed of time celebrating with others.  So, as soon as I had an ultrasound to confirm, we told the world. 

Like my other pregnancies, I never got sick (Thank the Lord,) but I was constantly nauseous.  I had my food and smell sensitivities again, and anything spicy was intolerable.  I also wasn't big on sweets, which I was with Charlie.  Bland fast food, please!  What was really different about this pregnancy was:

1 - The fear.  I was crippled with anxiety that this baby would be snatched away.  As every week ticked by toward 19, I became more and more scared.  The day week 19 finally hit, I had a huge rush  of relief, still feeling the romping going on in my womb.

2 - The doctors.  I love my doctor.  I would recommend her to anyone.  But, because of Isaiah, she wasn't comfortable doing just the routine OB checks, she wanted me to see specialists.  By the time I was three months along, I'd had 10 ultrasounds and endless blood work, and was now heading to a Maternal Fetal Medicine clinic at least once a month to have intensive ultrasounds and lots of screenings done.  I wish we hadn't. 

First MFM ultrasound revealed a baby in one half of my uterus (I have a heart shaped uterus, basically confining the baby to one side.), and something unknown in the other.  Hmmm...the techs/doctors thought it was a twin that didn't thrive.  Great.  Then, they realized it's the Weston's hand.  Thanks for that.

Then there was the down's screening.  I had markers!  Cue ridiculously long ultrasound.  The ultrasound was clear, but in my blood the markers are low, but they're there, so they suggested we do an amnio.  (Side note, I'm way against amnio treatment for myself.  I've already had a one in 1000 miscarriage, I'm not going to do anything with those odds willingly.)  No.  Because I refused the amnio, I was offered the option of a Maternity21 test.  A blood test, just from me, no risk to the baby.  I agreed to that.  I scheduled that for the same day as the anatomy scan. 

Anatomy scan.  Two techs, two hours, regular and internal ultrasound reveals: Girl?  Girl.  we think it's a girl.  Probably.  80%.  Go ahead, tell everyone its a girl.  So, I told everyone it was a girl, had my blood drawn for more screenings, then waited a week for results.

(Now, about it being a girl - I knew in my bones that I was having a boy.  Tim thought it was a girl, was thrilled he was right, but even after the ultrasound I found myself referring to the baby as him and he.  I couldn't wrap my head around him being a girl - even though it would make preperations SO easy, since we already had everything we could ever need for a girl.)

A week later I got the call, the Maternity21 test came back clear for all forms of Trisomy, including Downs (the test checks for 21 different chromosomes, and is incredibly accurate, second to an amnio.  It also checks for X and Y chromosomes.)  But, hmm...they are seeing boy chromosomes in the blood work.  There is almost zero chance that this is wrong, so I need to schedule another ultrasound to confirm that it's a boy.

Next ultrasound:  Two hours, two techs, one doctor, one genetic counselor.  There was something between the baby's legs.  But, they had no idea what.  I saw what they were talking about, and I agree, it wasn't clearly a boy part, and it wasn't the lack of parts you look for with a girl.  It was an orb, just hanging out where something else should (or shouldn't) be.  This was when they started throwing horrifying suggestions at us.
Horrifying suggestion #1 - We have a baby with "ambiguous gender."  Externally, neither boy nor girl, we will have to wait and test to see if the reproductive system reveals what the baby is supposed to be, and if not, wait and see what the child identifies with waaaayyy down the road.  Either way, expect extensive surgery.
Horrifying suggestion #2 - Adrenal gland gone wild, causing girl parts to swell uncontrollably, resulting in much treatment and surgery down the road - possibly life threatening.
Horrifying suggestion #3 - Terminate the pregnancy.  Really?  Because this tiny human has a bit of mystique, we should end its life?  I look at my beautiful baby now, and am even more disgusted by the idea now than then.  How can someone do that over a perceived inconvenience?  Moving on.

Next ultrasound:  We found boy parts!  Measuring a little bit small, but we'll take it.*  But, wait, his heart was measuring too big.  So, naturally, the doctor jumped to the absolute worst possible conclusion - The baby might have Smith–Lemli–Opitz syndrome - basically extreme brain damage.  Again, an amnio was suggested, but since nothing could be done even if it confirmed it, we declined.  Instead, we got a fetal echo. 

Fetal echo:  His heart was measuring very slightly large, with nothing to cause it.  No visible holes, no structural issues, pumping exactly right.  Finally a doctor gave us good news, that the Smith-Lemli-Opitz suggestion was more than likely "much ado about nothing."  She had us schedule a follow up just to make sure it didn't grow more.

Next ultrasound:  Hmmm...One kidney is dilated.  Want to see a fetal urologist, or wait till he's born?  At this point, we're so over appointments we decided to wait.  (We had it done today.  Waiting for results, but not sweating it.) 

Fetal echo #2:  Same as the first.  She suggests we have an echo done after he's born. (We had it done yesterday, his heart is just right,)

I never had my last ultrasound, on account of the baby coming, and I'm so glad.  They probably would have "found" another "problem," and we were over it.  I think I'm even forgetting some of the things they warned us might be wrong with our son.  It was a non stop scare-fest.

I'm putting this here for a few reasons.  First, we're still frustrated by the emotional turmoil that was inflicted on an already emotional pregnancy.  Second, we discovered some doctors communicate the worst case scenario without telling you it's the worst case scenario.  There are a lot of reasons for a slightly enlarged heart.  SLO syndrome is insanely rare, and has a TON of other symptoms recognizable on ultrasound - none of which Weston showed.  This was the only thing he presented us with.  The only one.  It's ridiculous and angering that he put us under more stress than we were already under - then billed us for the "consultation."  If you're in a similar situation, get second opinions.  Ask questions.  We spoke with the genetic counselor after talking to the doctor, and she told us she didn't agree with him.  Ultrasounds are very open to interpretation.  It's not an exact science.

I'm not totally sure how to wrap up this post, but I felt that I needed to write it.  Carrying a baby within you is a wonderful thing.  I don't want anyone to have the joy of it stripped from them the way that Tim and I sometimes felt we did.  If we're blessed with another baby, we will not do  additional screenings.  Its too much strain for zero reward.

Despite All The Things doctors tried to stack against him, our tiny boy is very healthy.  And we are so grateful.

*There is a reason for the hard to read ultrasound, and its not ambiguous gender.  Weston has hypospadias, (the doctors never mentioned this as an option) which will require surgery, but its fairly common and routine.  And he is definitely a boy. 

2 comments:

  1. Seems like they see too much in ultrasounds these days! We had a horrible scare with my 3rd pregnancy and what do you know...our baby girl was born perfectly healthy! Even though I was SO thankful she was fine, it still was frustrating that they put us through unnecessary worry! Consequently, I chose to use a midwife
    for #4. The experience was amazing and drama free! Congrats on your sweet baby boy!

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  2. Asa was born with hypospadias. He had his surgery when he was 9 months old. I guess it varies in severity and Asa was right around the middle somewhere. Message me if you have any questions. But really, it's something that can be fixed easily, which is a relief! Sorry about the whirlwind, but way to stay strong. I can relate on some levels because of my pregnancy with Jubilee, but for different reasons obviously. VERY cute little boy--congrats!

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