TTTS-Twin to Twin Transfusion Syndrome

I received our annual donation request letter from the TTTS Foundation. It made me cry. She included a story shared on the TTTS facebook page. Amber, was diagnosed at 19 weeks with TTTS. She had laser surgery at 22 weeks and delivered her boys at 25 weeks. Dayton passed away 25 hours after he was born due to heart failure. Alex lived for 10 days and passed away from lung complications. What made me cry was this, "We spent every penny we had trying to save them. After 2 trips out of state and 10 days in the NICU, I now spend my maternity leave at home alone. I hope no one else has to go through this.". Unfortunately, I know how it is to spend your maternity leave at home, alone. I went back to work within a couple of weeks. After a week or so (time is a bit blurry), my family had gone home, friends had gone back to their normal lives, husband was back to work and I was at home alone...thinking...crying...wishing. I went back to work because I felt if I was doing something that I would be better off. In a way, I was.

Why am I writing about this? I want to spread the word of this horrible syndrome. It occurs more often than SIDS and everyone has heard of SIDS...have you heard of TTTS unless someone you know was affected by it?? My doctor never mentioned anything about it. I briefly read one paragraph about it in my twin book but it said it was rare so I didn't think much about it. Anyone that is pregnant with twins needs to be notified of this. Even if they say they are not identical. I know of moms who lost their twins to TTTS even when the doctors said they were not identical. They (dr's) can be wrong.

Mary, the founder of the TTTS foundation (www.tttsfoundation.org) had twin boys who were born premature due to ttts. One survived and one passed away. The survivor, Matthew, is now a healthy 21 year old. She founded the TTTS Foundation in honor of her sons. Mary provides information about ttts, treatment, access to medical specialists, plans of action, emotional support and a circle of care program. This program provides free airline tickets and hotel stays to get to treatment centers and pays for family expenses and bereavement costs. Bereavement costs is not something you think of when you deliver your babies...we were fortunate that a local funeral home donated their time and facility to cremate the boys and provide us with urns. Mary has a forum on her website and that is what saved me. I met other mothers who were going through the same exact thing as me at the same time. They have been wonderful friends and they honestly saved my life. Mary provided us with a packet of information specifically for dealing with the loss of your babies. It is a wonderful organization...please check it out and pass this on to help spread the awareness of TTTS, www.tttsfoundation.org.

December is Twin to Twin Transfusion Syndrome month in honor of Mary's sons who were born December 7th.

Small town living

After living back in Morrison, my hometown, for a year, I am still trying to adjust. Since Moved away 13 years ago, I have lived in towns about 25,000 or larger. I really love the small town life with the exception of one thing, religion. It's a large "thing" because in a small town, religion is a way of life. It's not that I'm against religion, it's just not for me. I did not grow up in a very religious household and I just never really understood what, why and how it worked for people. I don't want to offend anyone, if it works for you and your family, great. However, I still believe that I am a good person and I will instill values and morals on Wyatt and hopefully he will grow up to become a decent man.

I like a lot of the friends I have met here. However, I feel there is a wall between us because for so many of them, religion is a big part of their life. We can enjoy each others time and have fun but when it comes to talking...there is apprehension on my part. I feel as if I have to hide a part of who I am. I will say (type) it, I don't believe-gasp! I am a spiritual person, I just don't necessarily buy into the story. I guess I am sort of chickening out by typing this out as I know some of my friends will read this. We tried to go to a church here in town once to meet people. We realized though that we would be making friends based on lies. Obviously if they met us through church they would think that we believed when in fact we don't. So we decided it was not for us. I really do like the community that a church has. I think it is a wonderful thing, it's just not for me. I guess I don't know where I'm really going with this. I just wanted to vent so to speak (type). It's just the one thing that has been really hard about living in such a small town. Toby and I have not found really close friends mainly because of this one "thing" which may seem stupid to some but we would love to have close friends that we share much in common with...