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...

Potty training

I am so impressed with how well Wyatt is doing at potty training. We have been working on and off since he was about 1 with him sitting on the potty. Well, the last few weeks we have been working at it a bit harder. Whenever we are home, he wears big boy undies. That way he will feel it when he goes potty and doesn't make as much of a mess on the floor especially if it's #2. We only have carpet in our house too so it's much easier to clean up with undies on. Well, the last few days he is getting the hang of telling me "potty" before he is actually going potty. It still is not soon enough to get him to and on the potty before he goes but I'm so proud of how quickly he is figuring it out. In fact, he has started telling me when we are out of the house that he has to go potty. I have some pull ups but I didn't want to start using them until he was trained a little better...maybe I should start using them when we are out of the house?? The other question is what do you do when you are out of the house and he says "potty" but you can't get to a potty in time or at all? I suppose even if we can't get to one in time I should still take him and sit him on it, right? I've been telling him "good job" and praising him when he tells me in public. Should I continue that when we can't get to a potty at all? Any advice on dealing with him going potty in public is greatly appreciated!!

Fall Fun!

We have been enjoying the fall in the midwest...Here are a few pics from the last few weeks.

Farm Aid

Saturday was the annual Farm Aid concert. This was our third one we have attended. We feel very strongly about supporting family farmers which is what Farm Aid is about. It all began with a concert in 1985 in Champaign to help family farmers. They did not realize that it would become a yearly thing. I can't wait til Wyatt is older and we can take him. They have booths promoting all sorts of agriculture related ideas/groups/farms, etc. We signed several petitions this year, just one of the many great things about going. If you are interested in learning more about Farm Aid and what they do, visit www.farmaid.org. It also helps that Willie Nelson is the founder of Farm Aid and anyone that knows me knows how much I love Willie! He tries to do so much for our country and sometimes I feel he accomplishes more than the president. He is a wonderful and caring man, a great musician, comedian and just plain a living legend. I have read his autobiography and if you ever care to know more about him, I highly recommend reading it. You will learn a lot about him. We visited his home in Texas one year and walked out on to his golf course. His recording studio is there and someone was inside playing when we walked by. Toby and I wished we knew who was in there so maybe we could get a peek inside...well, guess what? We found out when we got home that it was a band called Mates Of State recording in there and they were on the same label as Toby's band...go figure. We probably could have gotten in..oh well. Anyways, back to the concert. It was a great lineup this year, as always. Lukas Nelson (Willie's son) played and he was amazing. We got to see him last year too. Band of Horses was very good and I really enjoyed getting to see Norah Jones play. She is my guilty pleasure girl. Jamey Johnson played who is by far one of the greatest new country Nashville musicians. He's the real deal. Jeff Tweedy was pretty enjoyable as well. There were a few others but I'm just highlighting the ones I really liked. John Mellencamp played and he rocked my socks off like always. He just sounds so much better and fuller live. If you like him, I you definitely need to see him live....ah...soooo good. Neil Young was very enjoyable and with him you never know what you will get. Of course, Willie played last. You can tell he is getting older and just can't play as long because he always has guests to play with him some of the time. BUT he is still so good. I'm glad I got to see him play years ago when he could still rock hours worth of a set. This was my 6th or 7th time seeing him play...not really sure which. I hope there are several more and many more Farm Aid's to attend.








Me enjoying a pb &j sandwich I brought from home so I could afford $7 beers, lol.


My sil's sister (Kelly), me, Toby, Karyn (my sil) and my brother Curt.

Update

Ok...so it's been awhile. I've been super busy with school. I just finished my first real design class, Basics of Interior Design. I loved it which is good since that is my degree. I am really enjoying school even though it takes up most of my evenings after Wyatt goes to bed. Toby is doing more of the core classes right now so I know he is not quite as pumped as I am. He will be there soon though. Wyatt is doing great! He is such a funny little guy. He has been learning new words almost daily for the last couple of weeks. He now says "no" but sings it over and over when he says it. It's so funny. He really is a smart and very good little boy. Tomorrow if the weather is nice we are taking Wyatt to the zoo. It should be fun b/c he has learned a lot about animals lately. He can make sounds for an owl, lion, monkey, cow and sheep. He loves owls right now and we plan to take him to see the new owl movie that just came out. He says owl "odwl"...it's very cute. We haven't done a whole lot lately, just the daily grind and a few trips to the park to play. The weather is getting colder here and fall has definitely set in. We broke out Wyatt's footy pj's the other night. I refuse to turn the heat on yet and it's been a bit cold in here at night. I'm looking forward to Halloween this year. Our neighborhood gets lots of trick or treaters which is always fun. Well, not much else to update I guess...hope everyone else is doing good.

Grief...

After being off of anti-depressants for 7 months, I am back on them. I won't go in to detail but the last two months have been hell. I have felt completely out of control of my emotions and like I am going crazy. It has been an up and down battle since I had Wyatt. I went to the doctor at the beginning of this month thinking maybe my thyroid was off since the pregnancy but my thyroid is fine. So, I started seeing a therapist last week and she brought up something in our conversation that I had never thought of. I really struggled the first 8 or 9 months when Wyatt was born. I was emotionally a mess. My dr and I thought it was postpartum depression and he put me on meds which really helped me be able to function. However, I still had a hard time connecting and bonding with Wyatt. I knew I loved him but I just didn't feel this really close bond. It wasn't until he was closer to his first birthday that I started to feel this way. I started feeling a butterfly in my chest when I would be with him, something I hadn't felt before. Well starting about two months ago, I became an emotional wreck again. Most of the time, the butterfly in my chest was gone. I would cry anytime for no reason and I was completely unreasonable and a wreck. My therapist pointed out that maybe I'm not really over my grieving period yet from losing the boys. It makes sense b/c the first outbreak occurred right after Wyatt was born and the second one was soon after we got back from Ireland. I thought the Ireland trip was very healing and it was so wonderful to see/meet Karen finally. However, maybe it did bring up some unresolved feelings. That would also explain why I may have had a hard time feeling like I was bonding with Wyatt. I'm really hoping these therapy sessions will help me. I can see a lot of positive things that have happened because the boys were in our lives for such a short time. But I also feel sometimes that I wish they had never been born because things would have been so much easier. It's a battle and I think in some ways it always will be.

I will leave you with one of my favorite poems:

Lifetime Wish
If we could have one lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
for yesterday and both of you.
A thousand words can't bring you back
We know because we have tried...
Neither will a thousand tears
We know because we have cried...
You've left behind our broken hearts
And happy memories too...
But we never wanted memories
we only wanted both of you.