Monday, July 11, 2011

July 12, 2010

Yes - you read that title right July 12, 2010. That is when my happy twin pregnancy bubble began to burst..... That was the day that I first heard the term Twin to Twin Transfusion Syndrome - another acronym.... I had already experienced, last year, how a seemingly innocent combination of letters like CDH (Congenital Diaphragmatic Hernia) can bring great heartache by experiencing my nephew's birth and death in May but now another acronym was being attached to my boys and their lives - TTTS.

Recently I have been thinking back to when I was pregnant with the boys last year. I remember how strangers would cry when they talked to me about my boys. This was well before TTTS shoved it's way into my life. I always thought it was odd that strangers would cry about a very happy experience. They thought it was odd too and would comment that they did not know why they were crying.... Maybe because somehow, someway I was already carrying the energy of a mother who would lose one of her children? I don't know but I do know that it WAS odd....

Today was an emotional day because of the date tomorrow, how it changed my life and because my brother and sister in law had their level 2 ultra sound today for their rainbow baby. That was when they learned of their first son's complications, just like me. I so want a healthy, happy baby for them. They learned today that all looks good and that they are having another boy! Yay!

So with my thoughts going back a year ago I wanted to copy my blog post last year about July 12, 2010

"July 12th, the big day when I got to find out if the babies were boys or girls. The opinions were split 70/30 in favor of girls. That was my guess too. 70% of us were wrong. They are boys! Very obviously boys as both of them showed off their “boy parts”. Two active, inquisitive little boys, oh my….

But that was not the only news I got. This ultra sound was a full one with the measuring of everything on each baby. They found some differences in size and in the amount of fluid in each baby’s sac. All of these things pointed to Twin to Twin Transfusion Syndrome, TTTS. Of course I had never heard of such a thing. It is fairly rare. It only happens about 10% of all identical twin pregnancies, around 2000-3000 a year. I was supposed to travel to Portland to visit friends and family later that week. When I asked the doctor about going, her response was. “If you miscarry you will do it whether you are here or there so go and enjoy yourself.” Not a response I was impressed by. I chose not to go…. The doctor also recommended that I get an amniocentesis done to check for genetic issues, which I refused. She did recommend a perinatalogist group for me to follow up with.

I went home shaken in shock and fear, getting on the internet I found the I read everything, emailed the foundation and immediately started on the recommended diet of extra protein and iron by drinking 2 Boosts drinks a day. I heard back from the foundation and they recommended that I meet with Dr. John Elliott if I could. He was on the TTTS board and actually had come up with the first procedure to help with the syndrome in the 80’s. Before he introduced the procedure of amnio reduction the mortality rate was 90%. His introduction of this procedure dropped it about 30%. As it turned out Dr Elliott was a doctor with the group I was referred to. I made an appt with him for a couple of days later.

I went in for my appt with Dr Elliott, getting another complete ultra sound and a full sit down discussion on TTTS. Dr Elliott choose to NOT diagnose the boys with TTTS but he did recommend weekly ultra sounds to track their progress because the syndrome can move and change quickly….

So that was it. I found out my babies were boys and I got to enjoy that news for approximately 10 minutes before the words twin to twin transfusion syndrome were said. Well, at least one of the expert doctors on this was in town and was NOT diagnosing them yet. This had to be good, right?"

I love you my darlings Nolan and Eli.

I miss you my sweet Eli.

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