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Friday, December 5, 2008

My Story (part one)

My mom... oh wait, maybe I shouldn't start the story at the very beginning. How about if we just start around the time of BigBro and Owen...

I enjoyed being pregnant and had a rather uneventful pregnancy with my first son, BigBro. I was working full-time at Nike and everything was 'normal':
  • I did everything my doctors told me to do (ate nutritious organic foods, stopped drinking coffee, took prenatal vitamins, had all the prenatal visits, tests/ultrasounds, etc)
  • Had morning sickness the first three months (it really annoys me that people call it morning sickness, because it's really an all day thing, not just in the mornings)
  • Gained weight (too much really, but I really loved Burgerville's Chocolate Hazelnut milkshakes at the end of my pregnancy)
  • Developed heartburn (which seemed to get increasingly worse as my tummy got bigger)
  • Disagreed with my husband over the name
  • Had a baby shower
  • Argued with my husband over the name
  • Bought everything else we needed for a baby
  • Did I say we fought over his name?
  • Decorated his room (of course we painted his walls orange!)
  • Developed Sciatica (at the end, I couldn't sit for long periods - my leg would fall asleep)
  • At the end, I was whale-like with very swollen feet and ankles
  • I was almost two weeks overdue w/nothing going on (no dialation, no thinning) when I went in to be induced (Easter weekend 2005 at Providence St. Vincent's - Portland, Oregon)
  • As far as pain goes, I thought I'd hold out as long as possible before asking for anything for pain... I ended up wanting the epidural by the time I was 3 cm dialated (does that make me a wimp?)
  • I pushed for only 45 minutes, then my big (almost 9 lb) boy was here!
Almost 4 years later, I can still remember vividly how excited (and happy) we were to have a new baby. Let me say that I grew up with the brain-washing our society imposes on little girls. You know, the load of crap about how you're supposed to work, get married, have babies (that you put in daycare), climb the corporate ladder and EVERYONE'S happy. I returned to work for a few months and realized what a load of crap that is! (Partially, thanks to Dr. Laura) I finally came to the realization: Who did we want to raise our child & give him his moral compass? An $8-10/hour daycare worker or his parents? I'm a stay-at-home momma, so you can guess the answer to that question. BigBro is the light of our lives. I never realized how much you could love someone until I had a child. Don't get me wrong, I love my husband - and loving a child is totally different.

In between BigBro and Owen, we had a couple close family members get very sick and pass away. Needless to say, I have become somewhat skeptical of doctors. They call it practicing medicine for a reason! You need to research and get informed about your own health / health problems and be your own advocate with the doctors about what treatment(s) to try, what side-effects there are and what the likelihood of a positive outcome might be. I could go on and on about my political beliefs on health care costs / insurance, but I won't do it in My Story, please someone ask me about this later & I'll post my political beliefs.

We tried to get pregnant again for over a year, then in early February 2008 I became pregnant with Owen. I refused the AFP (or quad screen) and early ultrasound (nuchal translucency screening) because I believe this to be a waste of my health insurance company's money. No matter what the outcome, I wouldn't abort the baby anyway - so why do these tests? Also, I had a friend have a false positive, which literally stole the joy of being pregnant for the remainder of her pregnancy. In her case, nothing was wrong or went wrong - it was a needless stress/worry.

Early on, I sensed that something wasn't quite right, but had no idea what it could be. It seemed like this child moved less frequently, less vigorously and I didn't feel his movements until I was a few weeks further along than with BigBro. I told myself that every pregnancy is different, so there was nothing to worry about. I was seeing an OBGYN at a clinic connected to the Legacy at Meridian Park (in Tualatin, Oregon - which is the nearest hospital). Then on June 18, 2008 (a day I will never forget), we had our ultrasound at 21 weeks (we did this just to find out if we were having a boy or girl & for no other reason). That's where we found out that we were having another boy (yeah!). They explained that they had found some soft markers on the ultrasound for something called Trisomy 13 or Trisomy 18. The doctor told us she was very sorry (she said it like our child was going to die or something??!!) and that we would need to see a perinatologist for the remainder of my pregnancy. I felt castaway. The doctor called a clinic connected with Providence St. Vincent's and made an appointment that same afternoon for us. I had never heard of Trisomy 13 or Trisomy 18 and when we got home, I immediately got online to see what this was all about. We had about 2 to 2-1/2 hours to kill before leaving for our appointment at Northwest Perinatal. The ultrasound findings were: clenched fists, bilateral ventriculomegaly (slightly enlarged brain ventricles), choroid plexus cysts (fluid filled cysts in the brain), a lemon shaped head and a lung mass. All the websites that I looked at showed us how very devastating either of these diagnoses would be, yet offered hope that our child could live up to a few years. The statistics were startling! Trisomy 13 occurs 1:5,000 births. Trisomy 18 occurs 1:3,000 births. Only 50% of the time these babies make it to term and of those that make it to term - only 5-10% lived beyond one year old. I had seen that a firm diagnosis could only be made if we did an amniocentesis. So- I looked online at amnios; what exactly the procedure entailed and what the risks were (some sites quoted 1:200 and others 1:300 chance of losing the baby). I felt like the odds were stacked against us and wondered why we would have an amnio before 28 weeks, which is when his lungs are developed enough to possibly survive a rupture of the amniotic sac.

Continued...

1 comment:

ThereseAnn said...

Your post popped up with my Google alert for trisomy 13... not knowing your story, I'll wait for your part two etc...
I like you opted for no AFP on this pregnancy,(4th child) for your same reasons... although mine was closer to home, my 17 yr old had the false positive AFP... did the amnio etc.. even at that point got pressure to terminate if there was a problem... I wasn't doing that again.. so to make a very long story short... my daughter surprised us at her birth with full trisomy 13.

When told they normally didn't do much for these kids I perked up "what"??? Would you let my child hit by a car lay there, doing nothing? Or my child stricken with Cancer, doing nothing? This child deserves nothing less. She is alive, breathing and is loved... and so our journey began...
Trisomy, something many of us never heard of till our babies.. we just thought we were doing prenatal testing right... everyone does it... but oh, the pressure that arises, when things just aren't right...
May God Bless you and your family... I'll look forward to hearing more about your journey.

Blessings,
ThereseAnn, mom to Natalia
http://www.livingwithtrisomy13.org