Twin to Twin Transfusion Syndrome

TTTS Tuesday

Stories from the TTTS Trenches {Jackalyn and Alexa}

Posted by on Jun 11, 2014 in Double Loss | 2 comments

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}

Posted by on Mar 18, 2014 in Double Loss, TTTS Tuesday | 0 comments

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…

Posted by on Jan 31, 2014 in Resources, Single Loss | 2 comments

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

Posted by on Dec 10, 2013 in Single Loss, TTTS | 0 comments

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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Crew and Dex {TTTS Tuesday}

Posted by on Nov 26, 2013 in Single Loss | 0 comments

Today for TTTS Tuesday I am proud to highlight my friend Megan, who created and has grown Teeny Tears into an amazing project in memory of her son Dex. Teeny Tears is an organization that provides diapers for preemie and micropreemie babies who pass away before or after birth. Megan is just an incredible and beautiful, strong woman, and someone I am proud to call a friend. I hope you will read her beautiful story, and if you feel compelled, join the Teeny Tears movement!

Crew and Dex’s Story as told by Megan

In the summer of 2008, our family received the exciting and surprising news that we were expecting twins! Knowing that we were now involved in a high risk pregnancy, I hopped onto the internet and learned all I could.  In the back of my mind all I kept thinking was, “people have twins every day!  This is not scary; this is exciting!”

Early in November, when I was only 28 weeks along, my water broke in the middle of the night. After calling one of our good neighbors to stay with our children, we raced to the hospital. At first the nurses couldn’t find any heartbeats, but that didn’t seem terribly unusual or alarming because they were very young and very small babies. After they had given me all the medicines in their arsenal to stop my labor, they became more serious about finding heartbeats. They found one tiny, weak heartbeat and it was failing quickly. They rushed me across the hall to the operating room and brought my sons into the world 4 minutes later through an emergency c-section.

When I awoke from the general anesthesia several hours later, my whole world had changed. Our son Crew was 1 pound 8 ounces, the size of a dollar bill. He had been born without a heartbeat, but was quickly resuscitated. Two more minutes and we would have lost him. As it was, he had a very tumultuous 3 months in the NICU, camping out on death’s door more times than we care to count. Today our little survivor attends special needs preschool. He started walking and talking this past summer and is a great blessing to our family.
Our son Dex was 2 pounds 1 ounce. It was my husband’s greatest sorrow to tell me that our little one did not survive his journey. He had passed away minutes to hours before birth from an undiagnosed and dangerous disease called Twin to Twin Transfusion Syndrome. It’s a condition that affects a small percentage of identical twins that share a placenta.  I learned later that my doctor had suspected that we were developing this disease, but hadn’t wanted to alarm me, so failed to mention it during our final ultrasound appointment.  He also did not send us to a perinatologist, or mention the possibility when I went into false labor twice in the weeks preceeding the delivery of our sons.  I had asked about the possibility of TTTS during every ultrasound appointment… except our final ultrasound at 25.5 weeks.  It was the one time I did not ask about it.  My doctor did not understand the urgency of proper diagnosis and intervention.  Years later I learned that I had been exhibiting all of the classic symptoms of TTTS on a rampage.  In the end, we had TTTS, placental abruption, and ruptured separation sacs.  I thought I was just 5 foot 1 and having twins.  Little did I know what a dangerous train wreck was going on inside.

Dex was placed in my arms wearing this beautiful handmade gown that was appropriately sized for his tiny body. The bereavement specialist at the hospital took hand molds and feet molds so that we could always remember how small he had been. They took beautiful pictures of him that we count among our greatest treasures today. They were even able to take a few pictures of our sons together in Crew’s incubator, the only photos we will ever have of them together outside of the womb.

Meeting Dex in person was one of the most beautiful experiences of my life. I felt him the moment his body entered the room and holding him in my arms the first time was like a healing salve for my broken heart. I’ll never be able to explain it perfectly, but the closest I can come is to say that I just felt an overwhelming sense of peace and hope and love from my Heavenly father. He was so beautiful. His spirit stayed with us throughout the day, giving us comfort and letting us know without question that he loved us, he knew us, he claimed us as his parents, and that things had turned out exactly as they were supposed to, no matter how we got there.

I don’t wish to give the impression that my heart wasn’t completely broken, because the truth is that I didn’t know how I could bear to live without him. There were so many moments of anguish, nights that I was afraid to fall asleep, tortured thoughts of how we could have saved him with earlier intervention.

Sometimes the miracle is in the miraculous healing of a child against all odds, as we received with Crew. And sometimes the miracle is in the healing of our hearts when trials and tragedy strike, crushing our expectations and threatening our faith.

As we came closer and closer to Dex and Crew’s third birthday, I began searching for a project that would honor Dex’s memory and give purpose to my grief. I was looking for something economical, meaningful, and within my limited sewing abilities.

I would make tiny little diapers for stillborn micropreemie infants and those that pass away in the NICU. We launched Teeny Tears last November.

Approximately 26,000 children are stillborn in the United States every year, about 1 in 160 births. Another 19,000 children die within the first 28 days of life. A significant number of these angels are preemie or micropreemie infants. The littlest angels are so small that even the very tiniest Pampers NICU diaper is far too large for them. Besides that, their skin is so delicate that commercial diapers are very damaging.

Our volunteers donate to hospitals and bereavement support organizations at no charge. These small diapers fit angels between 18 and 23 weeks gestation. The large ones fit angels between about 24 and 30 or 32 weeks. The need for these diapers is enormous and endless. Gone are the days when angel babies must be left with naked bums because there is nothing suitable. No longer must nurses try to fashion a “diaper” out of cotton balls and tape. Our little diapers offer dignity and modesty to the tiniest angel babies. We provide two diapers per family, so that the parents don’t have to choose whether to keep the diaper in a memory box or to bury the diaper with their child. This way they can do both.

Grieving parents often feel very lost, alone, and confused. Every special effort to honor their loss goes a long way. It is very difficult for a family to say goodbye to their child before they got to say a decent hello. These diapers, made with love, tell parents that someone understands that their child existed, that they are special, loved, real, and that they matter. The love that goes into these diapers tells a grieving parent that someone understands that their loss is tremendous. Because “a person’s a person, no matter how small.”

As you can imagine, November is always a tender time of year for our family. The year we launched Teeny Tears was the first November that I didn’t spend the first half of the month hiding under my covers in bed, eating chocolate leftover from Halloween. As I sewed for angel families, I felt close to my son and my heart was filled with love and a peace I didn’t know was possible.

Teeny Tears is my way to make sure that Dex and all of his angel friends are remembered.  It has been an unexpectedly joyful and healing endeavor and I have met some of the most caring and generous people along the way.  Many of our volunteers are angel families themselves, some of them still the walking wounded. As they participate in serving others in a similar plight, a miracle happens. They find their own sorrows lessened and their hearts begin to heal. Joy is found and lives are changed.

What began as a personal labor of love for the angel families at my friend’s local hospital in Washington and then ours in Utah has caught on like wildfire within the bereavement community. We have a busy Facebook group filled with volunteers across the United States as well as in Canada, Australia, and New Zealand who are gathering their families, friends, neighbors, and churches to serve Heavenly Father’s tiniest children and their bereaved families. We even made our first delivery to a hospital in Guatemala.

As an inexpensive, simple, unique, educational, and meaningful service opportunity, our diapers are being sewn by families, sewing clubs, youth groups, Eagle Projects, Angel Mother grief support organizations, and churches of all religious denominations. We encourage our volunteers to donate within their local communities and we also match volunteers with hospitals all over the country on our growing waiting list. Grandmothers are digging their flannel scraps out of storage, families are repurposing old receiving blankets and shopping yard sales for fabric remnants. And we know when all the fabric sales are going on!

To date, our volunteers have donated more than 21,000 diapers to grieving angel families across the world.  While I wish no one ever needed our diapers, I am pleased that there is something that we can try to do for these families to let them know that they are not alone.

 

 Crew just turned 5 years old on November 24th.  He is charming, sweet, and far too small for his age.  While he continues to be challenged by the lingering effects of TTTS, we are so lucky to have him with us.
Happy 5th Birthday Crew (and Dex!)

 

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Alexa and Jackalyn {TTTS Tuesday}

Posted by on Nov 12, 2013 in Double Loss, TTTS Tuesday | 0 comments

TTTS Tuesday

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.

(As a happy update, since originally writing this story in March 2012, Andrea recently delivered a full term, healthy, baby boy.)

Jackalyn and Alexa – Too Soon to the Party

 May 2012 was a stressful month, lots of travel from our home in North Carolina to family in Tennessee, to see my stepson in NJ and back all in about 20 days. It hadn’t been a great trip and I had smashed my face on the side of a roller coaster cracking a tooth. So I felt horrible, truly miserable, not really noticing when that time of the month came and went…. with no sign of evil red. After a particularly bad reaction to a work related encounter with a dead body I clued in.

I swear that first pregnancy test took forever to confirm, I woke my poor husband up after only an hour of sleep because I was crying so hard. I had always wanted to be a mommy. While the shock was still fresh I went to the dentist for that pesky tooth. Infected, so on to penicillin I went, and on came the puking. Nothing would stay down and after 3 straight days the dentist advised me to go to the ER afraid that the infant might have been harmed by the penicillin.

Panicked my husband and I went, we had only told a couple of friends and my mother we were expecting. My family has a strong history of miscarriage and I was determined to not get excited till 12 weeks. In the ER they wouldn’t let my husband into the ultrasound. and I laid on that cold table in tears, “Please” I kept whispering to the tech “Please just tell me there’s still a heartbeat” I was 7 weeks so I knew it might be hard to get. “shh” said the tech “I’m concentrating”. So I cried, I was convinced that sure enough I had lost this child already.

Finally the tech said “I’m not supposed to show you this, but here.” She turned the monitor my way and said “Here is Baby A, and here is Baby B”. I think at that point I cried harder! No history in the family, no fertility drugs, no clue what the next 5 months would hold.

That was by far not my only trip to the ER with my bundles of “joy” :) I was sick every 45 mins for 8 weeks running. 30 pounds and several hospital stays later at 15 weeks finally I got to start enjoying my pregnancy. 18 weeks came and we had running bets among the family about boys, girls or both! On our way into “sexting” Ultrasound we joked about names and how much longer I would be able to waddle around. I was already measuring almost 30 weeks around!

GIRLS!! Twin A would be Alexa, Twin B Jackalyn… and oh “by the way we think you might have a touch of TTTS but nothing to worry about… we will just send you for a better ultra sound at the university 90 mins away.” – Um, what?? HHrrmmm google: “what is TTTS” O.O My husband had to go to work so I had googled out of sheer curiosity, after all he had said it was nothing to worry about. I had a full on panic attack when I read the first page to pop up. WiKi “TTTS is 90% fatal to one or both infants” I called my sister in law in such a panic her husband called mine because neither one could understand me. My husband official band me from googling while he was at work. :-)
My midwife the next day knew nothing about Twin To Twin Transfusion Syndrome, even though she carried twins herself, and in fact offered us a consult to terminate. I’ve never been so hysterical in my life. Didn’t these people understand! I just needed a real doctor! My babies needed a real doctor! Luckily the nurse at the practice took pity on me and made my appointment at the University for the next day, transfer effective immediately.
18 weeks, Pre-stage 1 TTTS confirmed. Jackalyn was our donor, in 2 cm of fluid “stuck” to the uterine wall just under my ribs, Alexa our recipient, 9 cm of fluid cradled in our ribs. Watch, wait, see… weekly Ultrasounds, but the rotating Neonate specialist said “This is probably going to get worse before it gets better, you need to start preparing to be sent to CHOP for surgery”.
See my husband is a paramedic and I volunteer with EMS as well. We had a working knowledge of TTTS, could understand what all the treatments might entail medically. Most importantly we knew the odds were against us, this was going to be a fight my body and the bodies of my girls would have to fight, we were simply passengers on this ride.
Week 19 was good, seemed the fluids had evened out to 3cm and 5cm for the girls. We started to get hopeful, I slogged through making a registry, enjoyed just floating in the pool and helped by sweet husband plan a nursery. But I was tired, and boy was I getting big fast! Week 20, Friday I measured almost 34 weeks, was in a pregnancy brace and in pain. Not sore but in pain. So much so I couldn’t sit still for the ultra sound well. As soon as they touched the wand to my hard belly I knew. The fluids had changed again, drastically, Jackalyn was still in 2 cms of fluid but Alexa was now in 13cm and was now head down on my cervix.
I remember saying “No no little girl, your too early for the party! Stay in there a bit please!”
No wonder I hurt so much. We had yet another rotating Neonate who said that fluids were high but that everything else with the girls looked fine so they didn’t want to screw with anything just yet. No amnio reduction just yet, lets see how the weekend went and come back on Wednesday to check… Disappointed and with a horrible feeling I just couldn’t explain we drove the 90 mins home and I tried to relax.
By Sunday night I knew something was wrong, I was spotting fluid and the discomfort in my hips was getting intense. So back up to the hospital we went. Now technically 21 weeks we went to L&D complete with hospital bag, expecting to have a long stay. Nope, after several hours and two pelvic exams the hospital said my body was just responding to the fluids building, both test had come back negative that the fluid was amniotic and I would go home. No Ultra Sound would be needed and so flexerile was prescribed to ease the cramping in my back….
But nothing helped. Monday and Tuesday are a blur nothing but pain sticks out. I couldn’t sit, stand, or laydown for more then 30 – 45 mins without the pain intensifying. I remember the times distinctly. See I never got sick or upset while my husband was home, it always happened while he was at work. 24 very long hours pacing a two bedroom apartment that seemed to shrink with every min.
8:10pm – Tornado warnings throughout the county, husband dispatched to another car accident, I think ‘maybe a bath will help’.
8:15 – 8:27: Bath water stops all the pain, blissful silence rains through my body and I hold my breath hopping this has finally passed.
8:30 – My world falls apart as I stand up out of the bath and blood runs over the white bath rug. Finally I realize I’ve been in labor for hours, 100% back labor, no contractions, no ups and downs like I’ve always been told labor happens. Just white hot pain up my spine and blood all over the bathroom.
911 was not an option, my husband was 911 and he was helping sick hurt people. Luckily I had a friend, the wife of my husband’s partner who had asked earlier if I wanted company. A fellow paramedic. I called her and through the wind and rain she came, I didn’t tell her I was bleeding till after she helped me into the car.
She too knew. Our closest hospital has no NICU, and at 21 weeks I knew they wouldn’t life flight my girls to the University 40 mins away…. Through my blinding pain and fear I had to figure out how to say good bye, how to get ahold of my husband.
9:45 – we arrived at the hospital, and as they helped my into a wheelchair I saw my husband’s ambulance arrive as well. He had a critical patient too, he would come when he was able.
10:30 –Husband is able to come up for a moment, assures me that he will be back as soon as he finds someone to cover the county, you see he was the ONLY paramedic on duty that night. He kissed me and passed the doctor on his way in to examine me in the hall.
3 minutes later the Worst doctor in the world pronounces “Your 5cms dilated and fully effaced, there is nothing we can do. You need to prepare to welcome your girls.”
Welcome? How could I welcome babies I would never know? How could they not try to stop this labor?? Something!!!  In my anxiety and with my blood pressure rising I black out.
Later I would find out that they ultrasounded me in my blacked out state, found I was now at 27.5cms of fluid but that both girls, both beautiful perfect girls were kicking and happy and so very alive.
I remember waking up to my husband holding my hand, silent tears rolling down his cheeks as he held me saying “Its gonna be ok baby, I love you, they can’t stop it. Andrea, the girls have to come now.” I calmed somehow, knowing he was there, having his arms around me. He would get to see the birth of his little girls.
1:44 am September 19th 2012 21 weeks 2 days – My body must have heard the message too because with one finally white hot searing jolt up my spine Alexa made her entrance into the world by soaking the entire nursing staff assisting me. One minute later Jackalyn made a slightly smaller splash into the world. And all was clam.
The best thing I ever did was hold my girls that night, cuddle them, cry over them, take pictures of them, spend this heart tearing, soul breaking all consuming pain with my husband. He will never know them as I did, will never love them as I do. But still we hold each other together. Because in such a pit of despair and pain if we don’t hold each other together we will both fall apart. Our girls may not be here screaming for bottles or cooing and giggling music to our ears but they have brought my husband and I together in ways nothing sort of surviving such a horror could.
Somehow I knew we would never bring our girls home. My husband had worried about only having a two seater truck, about fitting two cribs in our apartment. Two weddings, two proms, 3 woman in a the house all on the same cycle :-) And my only reply was ever “Lets worry when they get here” Like somehow I knew that to worry while they were with us spinning and tumbling in my tummy would be a waste of time.
We chose not to bury our girls and instead held a small memorial on the beach for them since really, they were ours alone. We continue to talk about them and do things in memory of them daily. I carry them with me everywhere, in a necklace with their ashes, and in a tattoo the exact print of their tiny feet. Never will I be without them.
Now my girls walk beside me as I try and help other moms. Every day I try to help other moms dealing with TTTS or comfort moms who now hold angels in their hearts. Not what I thought I would spend my days doing 5 months past their due date. But for now I find peace in what I hope makes Alexa and Jackalyn Proud.
My husband in turn has hooked up with an organization that does bereavement photos for stillborn and NEONATAL deaths called Now I Lay Me Down To Sleep, trying to give other families one of the things we hold most dear, photos of their angels. He has started a company called “2 of a Kind Photography” and uses the purple daisies I have adopted as their symbol for his logo.
Never will I allow the world to forget that my girls lived, never will I allow myself to believe that this pain is all I have left to remember them by.
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