Elena and Diana’s story

Today we hear from Laura D. who is sharing her TTTS journey with us. Her girls Elena and Diana are double survivors (thankfully!) but they still had a tough journey to make it here alive. Twin to Twin Transfusion Syndrome is never an easy battle. Thank you Laura for sharing your girls and your story for this weeks TTTS Tuesday.

 

Elena and Diana

3 years ago in March i found out that i was pregnant, it was shocking as it was not planned at all, we had 3 children already, had discussed having 4 but didn’t think it would happen so soon with our youngest being 6 mo old at the time. Di and El

I remember how shocked I was because we had been taking every precaution and I was also breastfeeding the youngest. I found out on a Saturday and then took another test the following Tuesday when the 2nd test was positive I called my OBGYN for an appointment. The appointment was scheduled for April 22nd almost 4 weeks away, I didn’t want to wait that long, but they said i needed to be at least 6 weeks along to get a good ultrasound reading.

Time drug on, but eventually April 22nd arrived and I was nervous, they took me back to ultrasound and asked me to take a pregnancy test just to be sure, then they proceeded with the ultrasound. All the sudden I heard “there are 2 in there”!

I said What! as I stared at the screen in utter amazement, my mom was with me and was also very shocked. My husband and I wanted 4 kids and yet now we would have 5, it would be a lot of work but I knew we could do it.

At the time of the ultrasound I was actually 9 weeks pregnant, little did I know that in 9 more weeks things would change. When i got home and told my husband he was just as shocked as I was, it was then that we started telling people that we were having identical twins. Life was good and we were thrilled.

9 weeks later at a routine ultrasound the 4th ultrasound of the pregnancy my OB said he saw a size difference between the girls and said that he was concerned that it might be TTTS and wanted me to see a Perinatologist about this. So he sent me to Charleston, WV to see Dr. B at CAMC women’s and Children’s hospital.

Dr. B did a very lengthy ultrasound where they did several measurements and other readings, then they told me that the twins were girls. After the ultrasound they took me to a consultation room where it seemed I waited forever until Dr. B came in and told me that the girls had what is called TTTS or Twin to Twin Transfusion Syndrome. He explained that baby A Elena was the recipient because she was the bigger of the 2, and baby B Diana was the donor and was giving her sister most of her blood and nutrients. He said that the best thing to do would be to go to the Fetal Care Center of Cincinnati to have a procedure known as Laser Ablation done, where they would go in and cauterize the 4 blood vessels that were causing Elena to receive the extra blood and nutrients, that he was hopeful that the procedure would work.

In attempt to be closer to home and to possibly stay with family I did some research to find another possible location to have the procedure done and Dr. E in Pittsburgh popped up. At the time I was told by his staff that he had done the procedure while supervised but had never done it solo. This concerned me a lot and Mary from the TTTS Foundation talked to me and calmed me down she assured me that the better dr’s were in Cincinnati and although the dr in Pittsburgh was capable he was not that experienced.

So I went to see Dr. E in Pittsburgh and after a 3 hour ultrasound he told me that I had 5 options, 1. Do nothing and let them die, 2 save the bigger one to save the smaller one, 3 terminate the entire pregnancy because I already had 3 healthy children at home, 4 Amnio Reduction would not likely help and because of my weight I was not a good candidate for the surgery.

I decided at that point that i would go to Cincinnati, the next morning after I had gotten home from Pittsburgh, Dr. E called to say that he had scheduled an Amnio Reduction with Dr. B in Charleston and that i would need to go to Cincinnati to have the surgery done later that week. The Amnio reduction took place on July 2nd I remember it well it was a Friday, the following Tuesday I was scheduled for the surgery under the very capable hands of Dr. L and his team at the Fetal Care Center of Cincinnati.

After a lot of tests they told me that the girls were in stage 4 and we had to act almost immediately and scheduled me for surgery the next day. they had told me that when they did the MRI that it showed that Elena had 90% of the placenta and that Diana only had 10% of the placenta and also had fluid on her brain.

The next day the surgery went as planned and they were very hopeful that things would be better, they told me that after the surgery that if Diana was going to make it she was going to have to fight. The next morning they did an ultrasound and sent me to my hotel room for the week until I would have to go back for follow up tests. The following week when they re ran the tests they said that the girls had made almost a complete turn around and they sent me home on modified bedrest.

2 months later on Sept 13th I saw Dr. B again (at this point I had been seeing him every week) this time he told me that it appeared that they girls were headed into reverse TTTS and the panic began all over again he said he would call Cincinnati and get back to me. 3 short days later on Sept 16th Diana’s water broke, at first I was not sure what had happened other than I stood up and there was a huge gush of blood everywhere, I called my OB and he said to come in right away, when I go there they took me straight back to ultrasound where they determined that Diana was completely folded in half her tiny little chin touching her chest because her water had broken and I had gone into labor.

After what seemed like forever after my Dr, had checked me and the ultrasound tech had done the Biophysicals they rushed me across to the hospital (across the catwalk from the Dr.’s office) the immediately rushed me into a c section and put me under general anesthesia, my husband had not yet arrived at the hospital when they had taken me into surgery. It was during the C section that my OB realized that the girls were not headed into reverse TTTS but had completely turned around, baby A was now baby B etc, Elena was delivered first and 1 minute later Diana entered the world both girls were taken to the nursery to be stabilized and to wait for the transport unit from Charleston to arrive.

I remember waking up in recovery and looking out the window and seeing the sky go from grey to black almost instantly, I didn’t think much of it seeing as how it had rained all day. When they finally took me to my room they told me that the transport team was trying to decide whether or not to transfer the girls by air or by land due to the weather conditions. I was so groggy I still did not understand what was going on outside, when they wheeled me into postpartum my husband was there and he told me that my mom would stay with me at the hospital and that he would go to CAMC in Charleston to the NICU with the girls.

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It was about an hour later on the news that it showed a tornado had passed through 7 towns across Ohio and West Virginia, one of those towns being 20 minutes from the hospital and that a man had lost his life trying to save his wife and their dog. It was a lot to take in all at once. 2 days later I was released from the hospital and went to Charleston to be with my girls, from then on it was at the NICU during the week and home and hr and a half away on the weekends.

Diana and Elena

The girls spent 10 weeks in the NICU before coming home just before their first Thanksgiving. A month later a cold hospitalized Diana for 4 days. But here we are almost 3 years later and other than being developmentally behind i have 2 very healthy Identical Twin Girls, soaring over the obstacles that stand in their way on a daily basis. I have started writing a book about my experience with TTTS and my girls, I have started a March of Dimes team in their honor and have volunteered to help the TTTS Foundation in any way possible. I want to give back to those who helped me and my family get through a very difficult time in our lives, and to emerge stronger than ever and to keep fighting so that one day there will be a cure for TTTS.

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Cameron and Cole {TTTS Tuesday}

Jodie and I connected through the TTTS Survivors with Guardian Angels group.  Someone asked me one time what that means. It means we have one twin that survived, and one twin that is the surviving twins guardian angel. Just like Kathryn is to Tiny, Cole is to Cameron.

Jodie’s angel baby, Cole, also the recipient, like Kathryn developed hydrops (severe fluid build up).  I also learned something new while reading this story. Her surviving twin, Cameron, actually received a blood transfusion while in utero! It is so amazing how far medicine has come, but we have so far to go!

Jodie has done some amazing things since the loss of her twin… as you will read below! I cannot believe how much money she has raised for the hospital they were treated in! Jodie is also a wonderful writer, and blogs at Journey to Hope and Healing.

Continue reading Cameron and Cole {TTTS Tuesday}

Happy 3rd Birthday Brady and Brenden – TTTS Survivors

Happy 3rd Birthday to TTTS Survivors Brady and Brenden!

Brady and Brenden actually turned 3 last Tuesday, 6/24/14 but I am a week late!

I originally shared Brady and Brenden’s story in October 2012, so they were due for another shout out anyway!

Here is the original post:

Today we share my friend Brandi’s story.  Her sons Brady and Brenden are thankfully both with us, but it was a difficult journey none the less!  She also had an anterior placenta and had the surgery.  (For those of you that are new to the blog, I did not have the laser surgery because my doctor told me I was ineligible due to an anterior placenta.)  So I reiterate – make sure you get in touch with a TTTS expert if you or someone you know is diagnosed with TTTS! Continue reading Happy 3rd Birthday Brady and Brenden – TTTS Survivors

TTTS Double Survivors – Benjamin and JD

One of the best things about the TTTS Community is the level of support, commitment, and dedication we have to each other. Each time I share a story, we hope to spread awareness, education, and hope. TTTS is a monster. No matter what your outcome, it’s a bitch. Plain and simple.

Today Shasta tells about her TTTS experience with her twin sons Benjamin and JD.  Her story makes me laugh a little because we also had two kids and decided to have another baby and were surprised to find out we had #3 and #4 in there! Thankfully Shasta has double survivors, but that does not mean it was an easy journey.

As you’ll learn in Shasta’s story, her friend was also pregnant with identical twins, but sadly lost both of hers due to TTTS at 19 weeks. So really, this is a post about double survivors AND double loss.

Please read Shasta’s story below! Continue reading TTTS Double Survivors – Benjamin and JD

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. Continue reading Stories from the TTTS Trenches {Jackalyn and Alexa}

Crew and Dex’s TTTS Story + Teeny Tears

If you are a TTTS parent and you don’t know about Teeny Tears, you need to learn about it. It’s a fabulous service organization to any one who has lost a baby… you’ll read more farther down. I want to feature the founder and her TTTS story, and to say that I have finally brought my NICU into the Teeny Tears community. I am glad to bring the hospital that we have loved and lost in into the folds of this community.

I am proud to be a part of Teeny Tears, and want you to know Megan, the amazing mom who started it all.

I want to share a quote that Megan posted recently from one of the Teeny Tears representatives who attended a bereavement conference in Chicago.

“Being at the conference was a wonderful chance to hear from hospitals that were already using Teeny Tears diapers about how much they were appreciated by the staff and the families. The nurses loved having something to offer the families that was handmade with such love. The conference was also a great chance to introduce new hospitals to the diapers. Nothing is as convincing as seeing how truly small the diapers are and touching them to feel how soft they are for delicate skin.” ~Katrina

Read more here:
http://teenytears.blogspot.com/2014/05/for-love-of-mara-in-chicago.html

 

Teeny Tears

Continue reading Crew and Dex’s TTTS Story + Teeny Tears

Braxton and Connor {TTTS Tuesday}

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

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. Every time 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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