No Holding Back

Living With Purpose

Stories from the TTTS Trenches {Jackalyn and Alexa}

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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.

Jackalyn and Alexa – Too Soon to the Party by Andrea 

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 lay down for more then 30 – 45 minutes 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 minutes away…. Through my blinding pain and fear I had to figure out how to say good bye, how to get a hold 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 ultra-sounded 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 seat-er 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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Comments

  1. You area a unique woman, and I admire your strength and your passion to help others. I will never be able to grasp your pain, and I am so sorry for your loss. I have not lost a child, but I was close as my twin girls had TTTS stage 3 at 17 weeks, and it was the toughest journey my husband and I have ever gone through to date – this did bring us even closer together. We were blessed, as my girls made it, weighing 1.4lb and 4.1lb at 32 weeks, but it could have been so different.

    You are an inspiration, and I hope your heart will find peace.

    Reply

    • Thank you very much. It doesn’t feel much like bravery most days, more like the path I was suppose to lead. I’m very glad to hear your girls survived and being so tiny!

      Reply

  2. So sorry for your loss 🙁 i lost my son at 19 weeks and the sadness in your eyes in the picture of u holding them i totally understood. May God give you strength and i am sure u will one day meet them in heaven x

    Reply

  3. So sorry for your loss TTTS sucks!! I lost my twin boys at 18weeks when i went into labor due to TTTS. That was a wednesday morning the saturday before i had been to the ER because i was 100% sure that i was leaking fluid and the dr refused to test it. Turns out i had been right. My recipient baby’s sac had been loosing fluid. It has been a month since i lost my boys and so many emotions thoughts and feelings flood me. I have been making crocheted items for our hospital nursery for other angel babies/parents.

    Reply

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