Monday, May 6, 2013

Motivational Mondays - The Smith Family's TTTS Journey

So I am finally getting to the project I began dreaming of almost two months ago.  If you don't remember what that project was, please reread this post  . The basis of that post was that, after being featured in another blog and being told how 'inspirational' I am to others (which I really don't get but that is a topic for another blog) I decided I wanted to do a weekly feature on those people who have taken crisis and trials by the horn, turned it upside down and come out on top.  Those people who have endured some of the toughest things life can give and chosen to do great things with that, chosen to let it motivate them to change things for others, support others, do great things to honour those they have lost etc.  
My first Motivational Monday feature is the most suiting I could possibly find...because this person was and is my inspiration.  I know that I have spoken of Fetal Hope (now called Fetal Heath) on my blog before but I am not sure if I have told the story of how I 'met' the folks there.  Someone in my real life (I think Tania Davies, a past co-worker but don't quote me on that) did some research after TTTS became 'the word of the day' in my life.  Within days of us being diagnosed and losing Cole she sent me a link to this amazing website and message board.  There I 'met' two amazing people who I have come to know as friends.
I remember, clearly, my first few posts on the Fetal Hope message boards.  I was devastated, confused, lost, angry, sad and just plain 'a mess'.  I posted about being some many days into the 'hell that is TTTS' and not really even understanding what happened.  Within hours I had a response of support of a lady named Tammy.  She shared a bit of her story with me but moreover she shared her support, her heart and her prayers.  She offered to call me and asked for my phone number.  Within an hour of me sending it to her she was calling me from Colorado.  I think we spent well over an hour on the phone that first time.  She answered so many questions and made me feel like there were no stupid questions.
Over the next few months I exchanged many messages and phone calls with her.  I wasn't in the hospital 24 hours after my water broke and she called to share her support and concern.  In the following weeks/months she helped me prepare to welcome my boys into this world.  She shared the most personal and private part of her life... she shared stories and even pictures of her angel, Nicholas, with me.
And as life moved forward and my boys were born she continued to support me.  She called a few times and when I seemed ready to support others she helped me connect with others.  She encouraged me to share my story and she helped me to understand why others didn't always handle hearing me talk about our journey well.  

Tammy's support, dedication and kindness inspired me to be a 'Tammy' for someone else...and now, literally, hundreds of someone else's.  Together with the founder of Fetal Hope, Lonnie, we have dreamed up a few wonderful ideas to raise awareness and support for TTTS.  Each time I question what I am doing, especially when I've been burned by those in other support organizations who disagree with my approach, with my beliefs, with my alliance with Fetal Health, Tammy is there to encourage me, to tell me how proud she is of me and how I have allowed God to move in my life through Cameron, Cole and TTTS.
Today I want to share this motivational person with you and thank her for all she has done and continues to do.  

The Smith Family TTTS Journey - by Tammy Smith
Our journey to get pregnant had been a long one.  We had tried for four long years to have a baby.  The struggles of family bugging you at every turn.  People telling me I was getting old.  I finally had to tell my family of our difficulties so they would stop pestering me.  We had testing, we had treatments and we had a simple surgerical procedure, after all of this my husband and I were informed that it was unlikely we would get pregnant on our own due to endometriosis. We were devastated and heart broken by the news. It felt like someone had punched me in the gut.  At the same time we were told that we were perfect candidates for IVF. After much thought and deliberation we chose to risk everything to have a family. We sold our house to have enough money to do go for it and were able to start the IVF process in July 2004.
After a hard and long journey... after shots, and ultra sounds, and meds, and limitations and so much more ...Only a woman who has been told she has two tiny heartbeats can imagine the bliss of being pregnant with twins. I was in awe. My husband was a little shaken. We had two tiny heart-beating peanuts in one tiny sac. We were having identicals. I had hoped for a girl and a boy in this process however my siblings assured me this was so much cooler.  We were besides ourselves and so were our families and friends.
At sixteen and a half weeks we were going in for our third ultra sound; this one to find out the sex. We were having boys. I loved watching them move around and my friend was in awe. We never realized they were concerned and taking extra long until the doctor came in. We had TTTS or Twin to Twin Transfusion Syndrome. As they explained the difficulties of this syndrome, I felt like I had an enormous slab of concrete sitting on my chest. I maintained my composer in the office, but I’m not sure how. I felt anything but calm. My miracle pregnancy was in jeopardy and the long battle was about to begin.
Every appointment there was more devastating news. We had to make the most difficult choices of our lives. As they struggled, so did we.  I continued to be strong and positive despite everything. As their tiny hearts began to give out we were sent to a fetal center to save our babies... Only our doctors could not save both lives and we lost our sweet donor Nicholas.  It was and still is the worst day of my life.  Yet I was still pregnant .  Zachary, our survivor and recipient had done well  and the procedure went as well as could be expected. Zachary’s heart and blood flow weren't affected during the procedure and the following morning he was already starting to show dramatic improvements in his heart and blood flow. My heart however almost broke when I watched him on the ultra sound trying to get his brother to interact with him. I would never get to see them interact again.  I would not get to see them grow up together, play together, fight and just be brothers.  Our angel had gone to be with our maker.  I had to be positive for the child still fighting for his life. We returned home with bittersweet hope and sorrow. I had to stay calm and focused and most importantly positive. Our battle had just begun as I had an ever shortening cervix, constant contractions and a long tour of bed-rest to face in the hospital. 
Finally, the day had come to deliver these sweet babies. We had somehow, by the power of prayer, made it to 36 weeks. Not even my doctors could believe it. You cannot imagine the power of this bitter sweet moment; the bliss of delivering a baby that has struggled so hard, have him snuggled even for a moment in your arms and know he is safe (yet his journey was far from over), and the shear devastation of delivering a baby so tiny, so still and holding him in the palm of your hand wishing things were different. The pain is unbearable.  It was the most bittersweet moment of our lives; to have one baby so small and fragile, still fighting for his life and the other, barely a handful, who will always be a part of our lives even though we would not get to watch him grow up. We wanted each of the boys to have something of their brother’s so we gave them each others middle name by naming them Zachary Raymond Dane and Nicholas Dane Raymond. I held Zachary for all of one minute before he was whisked away to be transported to Children’s hospital where he spent his first 3.5 weeks. Where he underwent two cardiac catheter procedures in hopes of ballooning open his pulmonary valve. They finally sent him home on oxygen. Unfortunately, just five short weeks later he was not improving the way the doctors had hoped and he had open heart surgery at eight weeks old to remove his pulmonary valve.

We held Nicholas after he was born and we both sobbed. We sobbed for our loss and for Zachary’s loss. We wouldn’t get to watch him change and grow and Zachary would never get to hold his hand or snuggle up with him at night. Nicholas was so small and so perfect – just like his brother. We took a couple of pictures of him all wrapped up in his tiny blanket. These are the only pictures we will ever have of him. Nicholas was cremated and we spread his ashes in the place we exchanged our wedding vows. Every year we will light a candle in honor of the son we won’t get to see however he will always be part of our lives.

Time heals all wounds they say, however as a wound heals and begins to close it is often jagged, rough, red and ugly. It is often raised and occasionally even painful or sore. Over time though it softens, flattens out and fades but it never disappears. It leaves a scar.  That has forever changed us.  It is always there to remind us of our battles and our losses.  
I was often shocked when people would say with the best of intentions,   “Well at least you still have one baby.” As if this was some sort of consolation for my troubles. You would never say to someone who has lost a leg, “Well at least you still have the other leg.” Yet I have now met families who went home after their long toils with pregnancy empty handed and with not even one of their babies to raise.  So I know  I am blessed that I do still have one single TTTS survivor.
A few months later I began to do more research on TTTS, that’s when I found a reference to the TTTS Race for Hope. I immediately contacted Lonnie to find out if they were doing the race again that year in Denver. I was elated to discover not only were they doing the race again but they would also like some help. I felt it was a great way to celebrate all that Zachary had been through and to honor my little angel Nicholas. I helped put together a few minor things before the race and was amazed by the feelings of joy I felt helping during the race. It was a wonderful yet difficult day in November because it was very hard seeing all those identical twins. I loved being part of something so important however it nearly broke my heart as well. I went home after the race and cried. I had spent so much time trying to get Zachary here and get him well that I really hadn’t taken the time to truly mourn our loss. I actually started that process after the race.
My son is now 8 and doing great.  You would never know just looking at him that he had ever had to fight so hard to be with us. He is all boy and moving from the moment he wakes until his little head hits the pillow. His doctors couldn’t be happier. Sometimes when I look at Zachary I wonder what it would be like to have both our boys in our everyday lives. I love him with all my heart, however there is always something missing.  I don’t get to know what it is like to hear them giggle together or wonder what trouble they are conjuring up together. I don’t get to watch them both blow out their birthday candles together.  I truly believe we did what we thought was best for us and our sons. We had numerous families and total strangers praying for us. Although some things are still a struggle we love Nicholas as much as we love Zachary. Zachary does know all about his very amazing struggle and how miraculous he is. He will know all about his little twin.   
I am the mother of a single TTTS survivor. I continue to celebrate and honor both my boys by actively participating in the Fetal Health Foundation which I fully believe has and will give hope to tons of other families.  I help spread awareness. I provide support to families who have lost one or both of their babies. I help organize events to raise money to help other families save their babies. I help provide hope!!  Knowledge is power and we have the power to save these tiny lives.
I am the mother of Twins!!

Thank you Tammy Smith for being my first guest blogger.  I invite anyone reading this to share it and to consider sending me your story or the story of someone who has taken a trial and used it to inspire themselves.  Please send stories to

1 comment:

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    keep up the good work meh and also, please visit my blog and drop a comment even if it's a simple "nice post" reply.


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