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September 28,2012
I wrote this post a few days ago, in anticipation of this day. I have had a rough week, knowing that these awful one year markers were about to begin. I thought about not posting this, because it is dark and angry, although it ends on a lighter note. I wondered if this is the legacy Kathryn would want me to leave.
So I decided to channel my anger into a letter writing campaign. I am drafting a letter to send to all of my elected officials, at the State and Federal level. When I am done, I will post it in a new tab “How You Can Help” and if you feel so inclined, you may also send it to your representatives. All you have to do is copy, paste, and hit send on email these days. Until we have made some progress, I will continue to send them.
So, that is good, I am making progress. But I also blog to share my grief, to express it and help myself and maybe others, so I decided to keep the original post. If you choose to read it, continue on….
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September 28, 2012. The first of my really horrible markers in my dreaded year of firsts.
I recall last September 28th as if it was yesterday. I replay it in my mind over and over and over. It was a Wednesday. A beautiful, sunny, warm day. I was 20 weeks and 3 days pregnant and finally not so nauseous all of the time. JB picked me up and as we drove to the hospital, I remember nonchalantly saying “I just hope we see two healthy babies in there.” Then for some reason, I got nervous.
The events of that day, to include our diagnosis of Stage IV TTTS and our admission into the hospital for the first of many amnio reductions can be found here.
Just when I think I am moving on, gaining some clarity, finding a “new normal” I begin to be flooded by memories and grief as I pass through the significant anniversaries of our ordeal.
And just this week I received snippets of information that make it all come back to me like a blow to the gut.
One, I learned at my visit with my Rheumatologist that due to the type of antibodies I carry in my body, I should have been getting weekly ultra sounds starting at week 15. The SSA antibodies can cause heart issues. Hmm… seems like my OBs should have been aware of that. Would we have been able to do things differently if we caught the TTTS earlier? I don’t know…
Secondly, I learned that my high risk doctor now sends all patients with TTTS to Charlotte to the Fetal Care center. What a novel idea!! Why didn’t that happen a year ago? WHY?????
And while I’m asking why, my biggest why is this: why, for the love of all things holy, did my OBs, who should know that a 34 (would be 35 by the time the babies were born) year old with Lupus, carrying identical twins that shared a placenta would be extremely high risk, choose to keep me in their clinic, under “standard” procedures with respect to ultrasounds, etc????
No wonder TTTS kills twice as many babies each year as SIDS! Because the OB community has not done their due diligence in learning about this disease!
So yes, it is a black day. Today, as I recall what we have gone through over the past year, I want to rant and scream and kick my feet and pummel my fists on the floor like a two year old.
And then, I breathe deeply, I shed a few tears, and I regain the resolve to do what I can to make a difference. To take the steps that I can to bring about change. To bring awareness. To try to save another mama’s “Kathryn.”
I know you are at peace baby girl. And that gives me some comfort.
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