Stories from the TTTS Trenches {Jackalyn and Alexa}

Stories from the TTTS Trenches {Jackalyn and Alexa}
This week I’d like to highlight a story of my friend Andrea. Her twins were born too early, and neither survived. Since then, Andrea has been a major part of the TTTS Support Community, and each year organizes the effort to send out Mother’s Day Cards to moms from their TTTS angels.

Sharing the stories of other mothers who have gone through the nightmare of Twin to Twin Transfusion Syndrome (TTTS) can be so incredibly heartbreaking. But we do it for awareness. And the hope that the awareness we are sharing may help save even ONE family from the heartbreak we have experienced is good enough!

And those that write the stories do it to heal. To honor their children, here or in heaven, and to share with everyone those precious babies who are so important to us.

I have become friends with so many amazing women who, despite the most horrendous loss of losing one or both babies, have gone on to do incredible things. You may remember my post about Andrea from a few months ago, While Others Stand Still. Andrea, despite suffering such a horrendous loss, organized a huge drive for donations of bears, buttons, ribbons, and money for the Molly Bear organization. This wonderful charity sends bears to grieving mothers, specially designed to weigh the same amount as the baby lost. I am waiting for my Kathryn bear to arrive, and I can’t wait!

Andrea has decided that she is ready to share the story of her beautiful girls, Jackalyn and Alexa. Please read their story, as written by their beautiful mother, Andrea.

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Braxton and Connor {TTTS Tuesday}

Congratulations to Brooke and Willis – for raising over $2000 for the TTTS Foundation with their Walk for Life! Yay!

Today I want to share another TTTS Tuesday story. I was just recently introduced to Bethany, and she wrote a beautiful piece about her sons, Braxton and Connor.

Braxton and Connor

My name is Bethany and this is my story I wrote for myself.

The room is dark and cold. As I lay flat on the examining table, I feel a sense of unease. Something is wrong and I can feel it. I can see it in their facial expressions, all of them. I turn to look into my mother’s eyes and verify that she feels it too. She grabs my hand. The doctors aren’t speaking. They are all just peering into the computer screen like they are searching for something. In this moment, seconds feel like minutes. I am consumed in my thoughts. Will I ever escape this agony of the uncertainty? What is going on? Why aren’t the doctors speaking to me? Are they okay? As I am laying there, completely vulnerable and afraid, my heart picks up its speed. My palms begin to sweat in my mother’s hands. Oh God, please let them be alright.

The doctor sits down and she motions for another doctor to turn on the lights. After she cleans my stomach, I pull down my shirt over my pregnant belly and raise up to a sitting position. When I finally look into her eyes, she doesn’t have to say a word because I already know. She speaks anyway. “Your babies have passed away.” With these words, my life was forever changed.

I can’t explain what happened next. All I remember is what I felt, and it was a lot. At first I was in shock. I remember thinking, Is this really happening to me? Am I having a bad dream? Will I wake up any second and this all just be a nightmare? The doctor spoke again and reality slapped me in the face. “You can deliver them today or in a few days, whichever would be best for you.” Deliver them! I was just told I lost my twins and now I have to give birth to them! She went on to explain that they were 5 months gestation so it had to be done. I had to experience my very first delivery of childbirth to twins whom weren’t alive. I was to go through labor knowing that I could not take them home with me. I wasn’t going to hear them cry as they came into the world. I was to give birth to two little boys and then bury them into the ground.

Once I processed everything into my mind, I became withdrawn. I withdrew from my doctors, my mother, even myself. It was like the life was just taken out of my soul. I completely shut down and stripped myself from any emotion. I don’t remember the walk to the delivery room. I was a ghost walking the halls of a hospital. Not one tear escaped from my eyes because I didn’t allow myself to feel. Looking back I think it was my way of protecting my sanity. The pain was too much for me to deal with in that moment. So I chose to suppress all of my emotions so that I could survive what was to come.

I don’t remember much about being induced. I don’t remember what was said among family or doctors in the delivery room as we waited. The pain medicine they gave me made me sleep most of the time. I faded in and out of consciousness. Everytime I woke was a nightmare. I wanted so sleep forever. I didn’t want to deal with reality. I didn’t want to face childbirth of stillborn twins who I had just named Braxton and Connor the week before.

The last time I woke, it was time to deliver. My mother was right by my side and holding my hand again. They were born within minutes. I didn’t feel any physical pain because of the medicine. But the emotional pain started to slip right through that barrier I put up within myself and it was more painful than any physical pain I could ever endure. I did not hold them. I couldn’t muster the courage to even look at them. It would have scarred me more than I am scarred now. I could not hold my lifeless babies who I gave birth to. Just knowing that I could not take them home with me was enough torture.

After they were taken from me, I began to feel hatred for myself. I began to feel, period. The agony flowed through my being. I wept for hours. The tears could not stop. I was filled with despair and hopelessness. The anguish of grief I felt sent me over the edge and I lost all my faith in God. My soul surrendered to waves of despair. I became numb. In other words, I felt dead.

Three days later we held a beautiful graveside funeral for my boys. After it was over I felt like everyone was moving on with their lives but for me they were all I could think about. I even dreamed of Braxton and Connor in my sleep. I went through a major depression. The medicine my doctor prescribed me didn’t help so I quit taking them. Not many people know this but I attempted suicide. When I failed, all it took was one look in the mirror. I looked myself in the eyes and heard a voice saying “You are going to be okay.” I believe that was God talking to me. From then on, I still struggled but I vowed to myself that I was going to brave every day in a positive manner.

Six months passed and I became pregnant again. I was so afraid the entire pregnancy. I didn’t want to lose another child. I dreamed of horrible things that could be wrong with my child and had nightmares of delivering my baby under horrid circumstances. Anything and everything that could go wrong, I worried about. I was still a very sad person and cried almost every day I was carrying my baby.

On January 9, 2011 I gave birth to the most beautiful creature I had ever seen. From the moment I heard her cry for the first time I fell in love. When she was placed in my arms I wept happy tears and could not take my eyes off of her. As far as I was concerned, she and I were the only ones present in the world. Just her and I, with me locked in a wondrous gaze down at my little miracle. I named her Mallory, and she saved my life. She brought back all my hopes, dreams, and faith. Once again I heard that voice, “You are going to be okay.”

Nine months later I became pregnant once more with another baby girl. Those same fears had returned. The doctors reassured me that she was fine the entire pregnancy, however I still had my doubts. I didn’t want to get my hopes up. I just couldn’t afford to. Unless you’ve experienced the loss of a child, it would be difficult to understand the pain.

On March 11, 2012 MaKaya was born. As soon as I got to hold her, she peed on my arm. It made me laugh and cry, because I knew she was okay. After she was bathed we got to feed her. But something terrible happened. She got red in the face and couldn’t breathe. She was rushed to the nursery as I lay there helpless. I couldn’t move because of the effects of the epidural. I started to panic. The nurse calmed me down by reassuring me she was still alive and okay. She had a bowel loop in her intestine and had to stay in the nursery for 24 hours. Words cannot express how much I longed to have my baby with me. Once I got her back, I was so happy.

I now have two beautiful daughters with so much spunk and personality. They are funny, smart, and so sweet. I know I am truly blessed to be a mother. From time to time, I still am reminded of my twin boys. I imagine how old they would be, what they would look like and how they would act. It makes me sad to think of those things. I still struggle with depression to this day. I try my best not to let my children see me when I cry. I don’t want them to see me as a sad person. I want to be strong for them. But even I have my weak days.

I know that everything happens for a reason. I believe I lost the twins because God wanted me to grow and learn from it. I am a different person now than I was then. I believe I have a greater appreciation for life and everything that happens. One of my life motto’s is “Search for the rainbow after every storm.” What this means to me is that I should look for the silver lining in every bad situation I am thrown into. There is always a positive, you just have to believe in it and search for it. Life is a beautiful, magical thing. The saying, “Don’t forget to stop and smell the roses” is about the best advice anyone could ever give. It’s the little things in life that mean the most. Sometimes we get so busy with everyday life that we start taking things and loved ones for granted. We need to remember that our lives are a special gift. We need to stop worrying about growing old, because that is a privilege denied to many! The last thing I want to say to anyone reading this; live well, love much, and laugh often.

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Always my twin…

I think one of the hardest elements of losing one of my twins to Twin to Twin Transfusion Syndrome (TTTS) is the fact that I feel so cheated for my survivor. For me, as the mother, I deal with somewhat of an identity crisis. I am a mommy of twins with no twins. I worry that she will also have an identity crisis.

So I’m prepared to share with her all that I can about her twin sister, and let her embrace her identity as a twinless twin. I found this book, Always My Twin and I absolutely adore it. (Disclosure I am an amazon affiliate.)

It is a wonderful book that really delves into the emotions of losing one of your twins. I will read this to my daughter and she grows older, and we will share in Kathryn’s legacy of love and hope.

If you have lost one of your twins to TTTS, we have a facebook group called Twins with Guardian Angels. Feel free to join us there.

I have also written a book for grieving parents. Sunshine After the Storm: A Survival Guide for the Grieving Mother. The book includes four different accounts from TTTS moms.

Twinless twin, always my twin

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On #TTTS Tuesday, my TTTS Survivor Turns Two

TTTS Survivor

Yes, she is. She fought hard to be here, and she deserves every moment of joy this life can bring her.TTTS Survivor

My girls, Kathryn and Charis were born on December 10, 2011. One day after my 35th birthday. Two days later, Kathryn, who had severe hydrops and congenital heart disease caused by the TTTS, passed away in my arms. You can read Kathryn’s story here.

So today I celebrate my TTTS Survivor, Charis. The odds were not in her favor. Not at all. In fact, at one point, it was suggested I terminate her to save Kathryn. We chose not to. And by the grace of God, she hung on.

December is a challenging time of year for so many of us who are grieving lost ones. If you didn’t know, I edited and published a book with stories of over 30 grieving parents, entitled Sunshine After the Storm: A Survival Guide for the Grieving Mother.

Four of the contributors are TTTS mothers. In honor of my daughters, especially of the one who cannot be here with me today to celebrate her second birthday, I am giving away two print copies of the book. Please enter if you or someone you know might benefit from the hope, love, and encouragement of other parents who have traveled this road.

For those of you with a TTTS Survivor or two, let us never remember the babies who didn’t make it… and continue to fight for advancements and maybe even a cure!

TTTS Survivor

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