Sanaya Kaufman

Sanaya Kaufman (39), Sadye (4.5), and Rapha (7 months). Sanaya also lost identical twins to TTTS in 2013.

Sanaya is a previous participant, you can find her photo and story from 2017 here.

Brooklyn, NY

How has parenthood impacted your body image?

I’m proud and in awe of what this body can do. And how entirely my body has been changed by pregnancy and birth.

What is your truth? What is one piece of knowledge you'd pass along to your former self, or a new parent?

Something is hard for everyone, you just never know which part of it will be the hardest. And even if a family looks happy and healthy, you never know what they’re experiencing behind the scenes.

Why did you choose to participate in this movement and share your story?

Participating in this project has been a critical and deeply moving part of my journey. The first time, it helped me process my own experiences to see how varied and special everyone’s path has been - in the midst of great beauty and magic is hardship and pain and loss, and sometimes they all coexist. Seeing these images of me with my two beautiful children, in relation to all the other amazing people that have participated in this project, makes me feel like part of a grand community of parents making their way through this messy and spectacular journey.

When I found this project I was recovering from losing twins at 5 months pregnant, and was heartened and strengthened by reading so many stories. Then I participated when Sadye was 2 years old, and it was such an important step. I wrote my whole story for the first time and shared it widely. I became comfortable with the idea that people would find out about my loss if they googled me. I told strangers and coworkers about the twins, and helped others grieve through their own losses. I helped people navigate exclusive pumping after unexpectedly doing it for a year.

Now to see these pictures is deeply humbling. Here are these two beautiful people that exist because my first two little guys don’t. It’s a trip. Rapha has been a very different baby than Sadye. He nurses beautifully and wants to be with me all the time. I am comfortable in my skin and proud of what my body has been able to do.

Thank you, Ashlee. You have created something truly amazing and I’m so grateful I found you and your work so many years ago

Helen Werner

Helen Werner (28) and William (2). Illinois. Photographed in Madison, WI.

Helen is also mother to Theodore and Holden born and died (10/06/16), currently pregnant with her fourth baby, due 10/27/17.

Helen shares -

"I found out that I was pregnant with twin boys last summer. I was thrilled and terrified, and immediately started making plans and buying matching outfits. They were identical and everything was going great until our 18 week check up. They noticed that Holden had a problem with his heart and after testing told us that it was most likely Twin to Twin Transfusion Syndrome. They sent us from Madison all the way to Cincinnati, Ohio for possible surgery. After a long two days in Cincinnati, I woke up the morning of the surgery in preterm labor. I was only 20 weeks. They tried to stop the labor, but I was already progressing too quickly. In a horrible twist of fate, I was told that the Ohio second trimester abortion laws came into play in my situation, and they could not allow me to deliver my boys until my own life was in danger. I was ten centimeters dilated for twelve agonizing and heart breaking hours, until I was allowed to deliver the twins and had only twenty short minutes with Theodore before he passed. Holden's heart couldn't take the stress of this all and he was stillborn."

"I had hoped to be one of those women that fully embraced my postpartum body, but it's been really difficult for me. It was a struggle after having William, but after the twins it almost wrecked me. I remember a Facebook friend posted at three weeks postpartum how she was back in her skinny jeans, and I was blinded by fury that I was leaking milk and had a big postpartum belly - but no new babies. I've been slowly working on embracing the changes in my body, and realizing that it's let me create now FOUR beautiful babies, even if two of them aren't with me."

"I want mothers - especially loss mothers - to know how beautiful and worthy they are, despite what society tells us. I want to share my story to encourage other loss mothers and to connect with people who have gone through this terrible heartbreak. I also want to reclaim my body as something to celebrate."

"Only you know how to parent your children. Don't let anyone tell you otherwise. "  

Jocelyn Leon

Jocelyn Leon, Mother to Maxine (3) and Caroline (deceased), Mono-di Identical twins. And bonus mom to Manny Luke (14) and Alivia (17)

Jocelyn is a previous project participant. You can view her photo and read her narrative here.

Jocelyn shot with us in NYC years ago after being drawn to the project with a shared bond of twin loss and survivorship. She says that when she first participated she still felt extraordinarily broken. "I never had a moments rest from my grief but after participating in 4th Tri and meeting Ashlee and Laura, I had a sense of calm and closure immediately come over me and my life has been immeasurably better since". Jocelyn hopes to document how far she has come through her grief as well as where she and her daughter are now.

"I came to the project for different reasons than most. I've never had issues with my body image. I was so lost and traumatized and Ashlee helped bring me back to myself. Thank you times a million. I owe my current sense of peace to her more than anyone else. Just to look into her camera, into her eyes and know that she knew me, felt my heartbreak, was the single most cathartic experience of my entire life and I will be eternally grateful".

Sanaya B Kaufman

Sanaya B Kaufman and Sadye Dina, (23 months). Sanaya also lost identical twin boys to Twin-to-Twin Transfusion Syndrome (TTTS) and prematurity in October 2013.

"My first pregnancy and loss changed me. I am a different person now - scarred and heavy, but also stronger and more empathetic".

Sanaya and her husband tried to get pregnant one time, on a whim. She assumed it would take months to get pregnant but woke up one day and realized she was almost 10 days late. "We were living in a sublet while renovating our apartment, opening a business, and generally insane. To my shock and awe, I was pregnant. I laughed uncontrollably all day".

Their first ultrasound was at a midwifery practice that delivered at a birthing center. She didn't know much about birth, but thought she wanted a natural birth. Sanaya remembers the moment her midwife paused the ultrasound on her belly and she saw two tiny blinking lights. Twins. She says she cursed and felt completely overwhelmed and terrified.

Sanaya switched to a high-risk OB practice and at 12 weeks learned that the babies were identical - mono-di meaning they had their own amniotic sacs but shared a placenta. The doctor spent a lot of time with them and explained all the possible complications and printed out a lot of information about TTTS. She was monitored closely with bi-weekly appointments to confirm that the boys were developing normally and at the same rate.

At 18 weeks, the TTTS was officially diagnosed and was already Stage 3. They went to CHOP in Philadelphia to try laser surgery to correct the flow of blood from the placenta.  Sanaya was incredibly itchy all day and was diagnosed with cholestasis of pregnancy, a rare liver condition that affects pregnant women and is more common in multiples but generally shows up at the end of pregnancy. 

After a long day, and many tests, the team of doctors sat them down to share the grim news that the placement of the boys and her anterior placenta made attempting to save both boys through the laser surgery very very risky, the prognosis was not good.  Sanaya's cervix was already thinning quite a bit and the doctors strongly recommended that we try a fetal reduction to try and save one of the boys. 

After much deliberation and tears, they decided to do what they could to save baby A even if it meant losing baby B. The grief of losing Baby B felt heavy and terrible. She went in for surgery at 7am, they extracted 2 liters from baby's A's amniotic sac which provided some relief. 

Sanaya was sent home on bed rest and had to stay in Philly for a week to be close to CHOP. She cried a lot and eventually returned to Brooklyn to work remotely for a few weeks. Their goal was to keep their surviving baby in as along as possible - 28 weeks was her goal, 32 would be even better.

At 22 weeks, Sanaya went into preterm labor and she lost her baby boy on October 27th, 2013. She had been with her parents at their country house, and woke up with intermittent cramping and pressure. Her husband was working in Brooklyn but she decided not to drive back to the hospital in NYC because she was terrified to be in a car for 2.5 hours while having contractions, and not knowing what was going on.  They went to a rural ER that didn't know what to make of her. 

"The realization that I would have to birth these boys was terrifying. I had not thought about birth much, having been so entirely focused on staying pregnant. It was very scary. They offered me some kind of pain medication, which I gratefully accepted. They gave me Pitocin, to speed up labor, and as soon as the IV was in, my contractions were one on top of another and incredibly painful. Baby A was born a few minutes later in a burst with my water breaking. A few minutes later Baby B was born. We had a wonderful nurse that was very supportive. She encouraged us to visit the boys and spend time with them, but I could not. I was incredibly conflicted but ultimately decided that I didn't need to see them for closure. My husband wanted to, and spent time holding Baby A in a special room. I don't regret my choice, but I do wonder how my grief would have been different had I spent time with them".

Sanaya and her husband knew they wanted to try again, and all these complications were very unlikely to repeat in a subsequent pregnancy. They waited six months to try again and got pregnant again after two months of trying. Her second pregnancy was completely different in every way, but shaped in the shadow of the twins. They stayed with their high risk practice, and she was closely monitored. She developed gestational diabetes at 28 weeks, and had to start testing her blood daily.

At her 32 week appointment, the doctor started talking about induction and she was caught completely off guard.  They had taken a Bradley method class to prepare for natural childbirth but with everything they had been through, she did not have it in her to take any risks, she just wanted this baby to arrive safely. Sanaya was induced at 39 weeks in the middle of the night. Pitocin started at 6 and by 8 she had progressed to 3 or 4 cm. The doctor suggested breaking her water to move things along and almost immediately her contractions were unbearable. They were lasting for a few minutes at a time, with hardly any pauses in between so she asked for an epidural. Once the epidural took, she was able to rest a little bit in-between contractions, but was having bad back labor and needed a lot of counter-pressure.

Sanaya was shocked when the doctor said she could push. Within 20 minutes Sadye was born. "The doctor placed her on my chest and I cried and laughed so hard. Holding this slimy slippery little being I asked the doctor, “what is this baby?” The doc said to Chris {her husband} “Dad, what is this baby?” Chris took a minute because the umbilical cord was in the way and then announced “It’s a girl!”  I couldn't believe she was a girl. I was so happy. I had thought I was having a boy the entire time I was pregnant. Everyone thought I was having a girl. Old ladies on the subway. Aunties at baby showers".

She had never considered anything other than breastfeeding before Sadye was born and had naively assumed it would be easy if she was committed to doing it. She didn't even have a bottle or pump at home, but Sadye had a pretty significant tongue and lip tie. She was unable to latch at all for the first two weeks. After revision she did latch a few times, but only for a minute or two at a time, and it was incredibly hard and frustrating for both of them. Sanaya turned to pumping and ended up doing so exclusively for 11 months.
 

"Someday I'll tell her about her big brothers. I don't think about them as much as I used to, but they're here with me. Part of me. Shaped me as a mother and wife and friend. That grief is deep and doesn't go away, it just gets folded in to the person I've now become. I've lost so much. And if the twins were here, I would never have met Sadye, which feels incomprehensible. I feel guilty having that thought, but it feels honest".

"I didn't remember how I found this project, but in recent weeks I've realized that it is likely because of TTTS. Happy moms and happy babies look like everything is fine and easy. But nothing is easy, and everyone has a hard story to tell in different ways. It's just figuring out what's gonna be the hard thing for you. Women's bodies are amazing. And it doesn't matter how our children came to being, or what we do professionally, but motherhood is special and so damn hard. Most of my friends and colleagues know about my history, but none of my larger concentric circle of social media friends and acquaintances. We tend to hide loss in the shadows. when I lost the twins, so many women came to me and shared their stories of loss. I want to be honest about my past. And share my story and hope it helps another woman out there."

Amber Cessac

The amazing Amber Cessac, Eden and Noelle (4 - MoDi Identical twins), Selah (3) and Lovelyn (16 mo).

Amber learned 6 weeks into her first pregnancy that she was carrying twins but her OB at the time told her they were DiDi (two placenta's, two amniotic sacs). At Amber's 12 week appointment they check heart tones, measurements and blood pressure, and at 16 weeks they did the same. At 16 weeks, however, she started to experience swelling and began to feel very uncomfortable but they just chalked it up to carrying twins and everything being more difficult with two. Amber went in at 20 weeks, 5 days for her anatomy ultrasound and the sonographer showed her Eden, baby A was flipping around all over the place while Noelle was just sitting there. The sonographer measured Eden and showed Amber all of her limbs and organs but when she went back to Noelle she was silent. Eventually the sonographer left to bring Amber's husband in and when they returned she did another ultrasound quickly to show him. At this point Amber asked if it was normal for one baby to be so active and the other unmoving, the sonographer responded that it was common with twins and the doctor would be in soon to talk to her about how they were growing. Amber immediately told her husband that was not a good answer and started to solidify her sense that something was wrong. 

The sonographer got a radiologist who came to speak with Amber, he reviewed the measurements and she remembers seeing that baby B was only measuring 18.1 weeks while she was 20.5 weeks along. Amber remembers the ceiling tiles in that room vividly as the radiologist performed another ultrasound and whispered to the sonographer. When the radiologist finished the scan, he turned to them and said there was a serious problem and explained Twin to Twin Transfusion Syndrome (TTTS) to her. Her OB was wrong and her twins were sharing a placenta. He said that Noelle would pass soon and Eden probably would as well. He offered selective reduction and then sent her to see her OB. Amber cried like she never had before and had a very somber visit with her OB. He was very worried and wanted to refer her out to his perinatologist/MFM group. She was sent on her way, told to wait for them to reach out to her, and in the mean time, to stay away from the internet. 

That evening, Amber and her husband told everyone so they could rally around them. The next day woke up knowing she had to do something, if her daughters were fighting to stay alive inside her, she had to fight for them. She took to the internet and very quickly found a local TTTS specialist in Houston, Dr Moise, whose website had tons of information on TTTS. She watched videos, read everything she could and immediately called. She spoke with the nurse coordinator who spent an hour on the phone with her and explained all of her options. Once the nurse realized Amber was local, she asked her to send over her records and come into see them that afternoon. When Amber called her doctor for her records, they said no. They wanted her to see his MFM's first and then, if it was warranted go see Dr. Moise. Amber initially said okay, not wanting to rock the boat but hung up and was immediately overwhelmed with the sense that she had to take charge and she wasn't going to take no for an answer. She called back, got her records and went into see Dr. Moise that afternoon. She had a very lengthy ultrasound and they decided to perform laser ablation surgery within 24 hours. 

Eden's deepest vertical pocket was 18cms and Noelle's was 0. Amber was taken for surgery at 6am and after draining about 2.5 liters of fluid and severing 9 or 10 placental vessel connections, her surgery was considered successful. She was monitored overnight in hospital, discharged and put on bed rest for a week, and had weekly ultrasounds thereafter. There were slow improvements in her girls every time the checked in. Amber transferred OB's who monitored her weekly until 30 weeks when she began to also have weekly non-stress tests. Eden's heart was enlarged due to the TTTS but echoes showed that it was okay. At 32 weeks 1 day, Eden failed her biophysical profile and NST, so Amber was sent to Labor and Delivery for 24 hour monitoring and steroids. She was monitored for 3-4 days and then sent home. At 33 weeks, Noelle failed her biophysical profile and NST and the decision was made, that they had already beaten the odds, they may as well get their babies earth side.

Amber delivered via cesarean and she says the entire operating room was a celebration. Eden was born weighting 4lbs 13 oz and Noelle was 3lbs even. Both girls were taken to NICU but were breathing independently from the moment they were born and only needed to stay in NICU to learn to feed and grow. Eden was in NICU for 18 days and Noelle came home after 33. Amber was able to pump and breastfeed the girls until their first birthday and produced so much milk she was also able to donate over 300oz. Amber's girls dealt with a lot of anxiety and heightened emotions their first three years of life but they've been able to work through it and are doing really well today.

When the girls were about three months old, Amber became involved in the online TTTS community to reach other parents carrying twins at risk for TTTS. She and other parents began the online group TTTS Hope and Connections as well as Mono-Di Twins to reach, raise awareness, and advocate for other families through providing support and resources. Amber says she doesn't know why her TTTS went unnoticed for so long and her girls are still here, or why surgery was the perfect answer for them. She says, it's not survivors guilt but in her girls lives she feels the weight of every baby who is lost to this disease.  

Amber and her husband knew they wanted to be young parents and wanted to have a big family so they conceived again around the twins first birthday. She called her new OB to let them know she was pregnant and that she needed to have an ultrasound at 6 weeks to make sure there was only one baby and that everything looked good. Amber knew she wanted to have a VBAC but they were moving and she needed to find a new provider. She had a list of people to interview and on her first interview, the OB she met with at 11 weeks said, "Why wouldn't you, VBAC?" She was thrilled to not have to look any further.

Amber carried to 40 weeks, 5 days and went into labor independently in the middle of the night. Her contractions were every 10 minutes through the night but the next day they slowed down to every 20-30 minutes. The next night they got very intense so she called her doula and they went into the hospital. She was only 1cm so while everyone was very supportive, they sent her home. Amber went to her OB the next morning to find she was 3-4 cm and 80% effaced so she went into the hospital. She labored there all day and her care transferred from her provider to the on-call OB. As the new OB checked her she was 6cms and her water broke during the check. As they headed into the evening, Amber had been resistant to the epidural but her doula suggested that it may be a good idea since she was headed into her third night of labor without resting. 

Amber chose to go ahead with the epidural but was incredibly uncomfortable once it set in and felt tied down with the catheter, pulse ox, blood pressure and all the extra "stuff" she suddenly had to have. Then her blood pressure started to drop, as did the baby's heart beat. They rushed in to give Amber medication to allow her blood pressure to recover and Selah also recovered but her contractions stopped. The OB came to check and she was still 6cms so she suggested a repeat cesarean. Amber asked for another hour to try. They sat her bed up, she pumped to try to stimulate contraction and hour later she was still a 6. Amber asked to try a little bit of Pitocin to see what happened and they agreed to one final hour. The charge nurse, who had a VBAC herself, said everyone deserves a chance to try and helped position Amber on the bed so she had on leg up and her pelvis hanging down. An hour later she was 10cms and in four pushes Amber was able to push Selah out just as the OB came back in the room. The moments following were so peaceful and they were able to delay cord clamping and measurements. Selah nursed right away and Amber says the experiences sealed the deal on her feeling empowered. She is in control of her body and her babies and feels like she can accomplish anything. 

Amber and her husband started the process of becoming licensed foster parents after Selah was born and thought they may foster to adopt and perhaps have other biological children in the future if it was in the cards for them. On Selah's first birthday, Amber had been feeling off and asked her husband to bring home a pregnancy test for her so she could rule it out before they went out. It was positive and she was shocked. She immediately started to worry about how far along she was and how many babies she was carrying. Her husband was really positive and eventually she knew that they would be just fine. Four kids, under four would be a new adventure for them and she was excited. Amber knew she wanted to have another VBAC but they had moved again and she needed to find another doctor. She found a supportive OB and things were going well until she learned that Lovelyn had an umbilical cord with a single artery. She was incredibly worried and overwhelmed with the news and what it could mean and it brought back a lot of emotions from her pregnancy with her twins. Amber called Dr. Moise for info and his opinion and he was willing to scan her for reassurance. She went to Houston for an anatomy scan and everything looked perfect, the MFM her doctor referred her to thought the same and she was able to let go of some of her fears and find peace about it. 

 Amber had a few extra ultrasounds with MFM's as she progressed and started in-office NST's twice weekly at 32 weeks. She had all scenarios swirling in her mind if something went wrong but none of that had to happen. She went into labor at 39 weeks 5 days in the middle of the night. They decided to take their kids to the Children's Museum the next day where she contracted every 15-20 minutes. Amber continued to labor at home and contractions eventually got to 3-5 minutes. She was 6cms dilated when they checked into the hospital and she labored with her husband. Amber chose not to hire a doula this time, since she'd done it before and says that maybe wasn't the best choice in hindsight. She was determined to do things without medication and the staff was really supportive. The OB broke her water at 8cms and guided baby down as she did it. At around 9cms, things started to get really tough, and Amber realized she wanted an epidural more than anything. She says she didn't regret anything more in that moment than not getting an epidural. They tried to tell her it was too late, but eventually said they would try to get anesthesia to come. She labored through it and once the anesthesiologist finally arrived she was 10cms and ready to push. Amber was worried the pushing phase would take much longer than last time but it went quickly and smoothly and Lovelyn was born without complication, the exact same weight as Selah. Amber was a little disenchanted with her unmedicated birth initially but would do it a gain, just with a doula next time. Lovelyn was breastfed for a year and is such a sweet addition to their family.

Amber says that with four under 4, she took all the pressure off of herself to be super mom and is having so much fun with her girls. Motherhood is where she has found herself. The experiences that she has gone through took away everything the world put on her about who she was supposed to be and forced her to come to this place of surrender and rawness to discover who she was and what she truly believes. 

Amy Wrzesinski

The amazing Amy Wrzesinski, Maleia Lynn and Maya Grace (2.5). When Amy was 19 she had an ovarian cyst that ruptured and the scar tissue had wrapped around her ovary, pinching it. After months of pain she found a doctor who was willing to go in to explore and fix it and he also found endometriosis. She was told to start saving for fertility treatments if she ever wanted to have children because it would be very difficult if it was even possible at all. Still, knowing she wasn't quite ready at that stage of life was able to put it out of her mind quite a bit.

After getting married, Amy and her husband began to think about having children and much to their surprise on their very first try they conceived. When she was 9 weeks pregnant, they went in for their first visit and ultrasound. Right away they were concerned that the babies had a very large size discrepancy and sent her for a more complete ultrasound where they learned they had a 1 week size difference. The had looked at her ovaries and said they could see where two separate eggs had been released so they assumed that she was carrying fraternal twins that had been fertilized and were growing at different rates. They went back a few weeks later to learn that both girls were growing well and continued with the pregnancy thinking that she may even be carrying a boy and a girl due to the differences in heartbeat.

The morning of her 18 week appointment she got a call that her genetic testing had come back with a marker for Spina Bifida. Later that day at her first MFM appointment she learned that she was carrying identical twin girls and that they had Twin To Twin Transfusion Syndrome (TTTS). She was asked to come back the following day for confirmation which they did. After confirming TTTS they were sent to Children's Hospital for testing and ultimately chose to have laser ablation surgery to sever placental vessel connections between her girls. They severed over 30 vessels and removed 2.5 liters of amniotic fluid from Maleia's sac. After surgery she was put on bed rest at home. She was put on medication due to thickening in Maleia's heart and a follow up fetal echo at 19 weeks revealed that Maya had a heart defect they couldn't see previously due to her stuck position. Maya was diagnosed with tetralogy of fallot which meant she had four defects all in one. They weren't able to determine how this was affect her only that she would need open heart surgery following her birth. Amy's doctors were very cautious with her continuing the pregnancy and twice she was give the option to selectively reduce which wasn't an option for her.

Knowing that Maya was baby B and would come out second they decided to deliver via cesarean to make things easiest on her heart when the time came. Amy was allowed to come off of bed rest a bit after she passed 24 weeks and she began having weekly non-stress tests. At 29 weeks she started to have leaking and bleeding that her MFM said was normal fluids and no cause for concern. The fluid continued through the weekend and her regular OB discovered she had premature rupture of membranes in Maleia's sac. She was immediately sent to the hospital and put back on bed rest for the next 10 days. She was taken to labor and delivery multiple times thinking she was going to deliver and was put on magnesium for 12 straight hours.

At 31 weeks + 1 day she started to labor but hadn't realized what was happening. Having planned for a cesarean she never imagined laboring on her own. She labored on her own for 6-7 hours before everyone realized what was happening and she was taken to delivery. Her girls were born exactly two months early, Maleia weighing 3lbs 3oz and Maya weighing 2lbs 3 oz. She was able to see them for seconds before they were swept away to NICU. Her only updates were from her parents and husband who were all terrified. While in recovery she was put next to another mother who had just delivered twins but had her twins with her to feed and hold which left Amy feeling helpless and lost. That night she was able to go to NICU to see her daughters and held Maleia for the first time, she had to wait over 10 days before holding Maya.

All things considered her daughters did very well with their breathing and stabilizing after birth, they had issues with jaundice but did better than anyone expected. Amy had really low blood pressure and swelled up a lot after her birth, they were concerned about blood clots but after ultrasounds and scans she was allowed to go home. After two weeks she left the hospital for the first time without her daughters. A week later her cesarean wound opened three inches and she had to have a nurse come to her house twice a day to pack and change her dressing which made scheduling visits to see her daughters even more difficult. A month later she was finally healed enough to be discharged from wound care.

After 44 days of learning to eat and grow in NICU Maleia was able to come home and has done very well since. Amy was able to take Maleia back to the NICU with her daily to see Maya. Around Maya's 60th day of life she started to have a lot of difficulties and had several major events where she dropped her oxygen, heart rate and saturations but no one knew why. They had hoped she'd come home and have her first heart surgery at around 6 months old but realized that they needed she was in the early stages of heart failure and they had to intervene. On her 63 day of life she was transferred to Children's Hospital by ambulance where she was intubated for several days to build strength and on her 72nd day of life she had open heart surgery to repair a large hole in her heart, scraped part of her heart where it was thickened and enlarged and the little bit of a pulmonary valve that she did have they removed entirely which leaves her blood flowing openly between her heart and her lungs. She can handle the shunting now but will need to have a valve placed down the road. The 7 hour procedure was one of the most difficult days of Amy's life as well as the days after when Maya was incredibly sick.  After 10 days she moved to a step down unit from the Cardiac ICU and after she healed they were able to focus on other things such as her difficulty feeding. They ultimately decided to have a G Tube placed after working with feeding therapists in hospital. After 97 days in NICU Maya came home on oxygen and her G Tube. She was thrilled to finally have them both home.

Life became busy with two babies at home and therapies starting. They continued trying to feed Maya by mouth but after she became very resistant they had a swallow study done which showed she had been silently aspirating and had likely been doing so since birth further damaging her lungs. Maya went on strict G tube feeds and the learned she was also having trouble with delayed emptying. The transition and sorting out how to keep Maya fed was an incredibly difficult time but she kept growing and continued to do better. She's now just getting one tube feed at night but is otherwise eating by mouth. In May, Maya had another hole in her heart closed and will require another open heart surgery in the next couple of years to place her pulmonary valve.

Most importantly Amy says that her girls are busy and happy, so much of which she attributes to the therapy work they've done. Physical therapy and glasses to correct astigmatisms for both girls and speech and feeding therapy for Maya has made a world of difference in their lives.

Amy has PTSD as a result of her pregnancy and NICU experience and has dealt with a lot of anxiety and triggers associated with all of her daughters doctors appointments, tests and visits. People tell her so often she's so strong but she doesn't always feel that. While she's had a lot of support she's also felt very alone and isolated in her pregnancy and first year home with her daughters. In hindsight she thinks that people close to her were so scared at the fragility of all that was happening it pushed them away. She's feeling herself get better as her daughters continue to thrive.

Amy has also been dealing with a lot of uterine pain and after seeing a pelvic pain specialist has been rediagnosed with endometrosis and possibly has adenomyosis. will be undergoing a procedure in January to explore and see what is going on and remove what they can. She hopes that it doesn't go beyond that and opens the door for future fertility without difficulty should they decided to have more children.

Amy has realized that all stories are unique, as unique as the people that come out of it. Amy feels that her story is one that she has needed to share in her struggles and their triumphs. She struggled with her body image both before and after children. After all they went through she disliked her body for not doing what she felt it should have done. Slowly she's been able to accept it and love her body again. Her daughters saying she's beautiful and just loving her, has helped reinforce that worth.

Jennika Coleman

The amazing Jennika Coleman with her identical twin boys Josiah and Malachi (3). She is also mother to Christopher (12). With her first pregnancy, she was young, single mom and did everything her doctor told her to do without much say in her birth experience. She was able to have a vaginal delivery and breastfed for 8 months.  Her second pregnancy was completely different and she was able to advocate for herself and her babies. When she learned she was having twins, she was told that she was carrying Monochorionic-Diamniotic "MoDi" twins which carried a lot of risks. She was scared but appreciated the information. She learned at her next appointment just 4 weeks later that her boys had Stage III Twin to Twin Transfusion Syndrome (TTTS) and she was rushed from Hawaii where her husband was stationed (Active Duty Air Force) to California for laser ablation surgery. After waiting the first 24 hours to see if her boys would survive the surgery, it was deemed successful. She had a cerclage placed due to cervical shortening and was able to return to Hawaii. The remainder of her pregnancy went well other than the fact that her providers were adamant about delivering via cesarean. She didn't feel it was necessary and fought to have a vaginal birth. She was able to deliver her boys vaginally without complication at 37 weeks, 1 day after cerclage removal and induction. Her boys were a healthy weight and able to come home with her. Jennika tried to tandem nurse but found it extremely painful so she pumped exclusively and supplemented with formula for their first 7 months. Jennika chose to participate because there isn't enough education or knowledge of Twin to Twin Transfusion Syndrome. She says, "There is nothing like learning your babies are in trouble when four weeks prior, you never knew that thing existed. I want people to know this exists and I want there to be more funding and research so that people don't have stories that are so different from my own."

Alexa Bigwarfe

The amazing Alexa Bigwarfe with her son Braedan (8), and daughters Ella (5), and identical twins Charis (3) and Kathryn (photograph). Alexa had a wonderful first pregnancy. She was able to conceive without issue and was healthy throughout but went on to have a difficult delivery. Braedan was face up and had a nuchal cord they didn't know about. He had to be suctioned and pulled out and was born barely alive. He spent his first 8 hours of life in the NICU which interrupted the immediate bonding she'd hoped for. Alexa wasn't producing enough milk for him and the first 2 weeks were very difficult. She started supplementing with formula and pumping but at 4 months her milk dried up completely. Alexa's experience with Ella was exactly the opposite, she had a very difficult pregnancy with a lot of joint pain and swelling but an easy delivery. She was born vaginally after 45 minutes of pushing and Ella latched right away without issue. She did develop a milk soy protein allergy but Alexa was able to nurse and pump for her first year. Alexa was diagnosed with Lupus after Ella was born which shook things up for her quite a bit.

Soon after, she learned she was pregnant with her twins which came as quite a surprise. Just as they'd grown accustomed to the idea of having 4 children aged 4 and under they learned at 20 weeks that her girls had Twin to Twin Transfusion Syndrome (TTTS) and they were already at Stage IV. Kathryn was baby A at the time and their recipient baby. She already had excess fluid building in her abdomen and around her heart. The doctor told her that both babies were going to die and she was admitted to labor and delivery. She had an amnioreduction and was able to stay pregnant for the next 10 weeks, 5 weeks of which were on full hospital bedrest with continuous monitoring. Alexa's girls were born at 30 weeks 5 days and Kathryn had to be resuscitated at birth but they were able to stabilize her. The fluid levels in her belly due to Hydrops were so built up that her lungs never had a chance to grow down to where they should be and she could not sustain life on her own. Kathryn lived for 48 hours before passing away. Alexa had hoped to have a good breastfeeding relationship this time but with all that had happened she was unable to pump for the first two days and then could barely get anything once she started. Charis was born growth restricted at only 1lb 10oz, however, and the doctors kept telling her that she needed her breastmilk, it was crucial medicine for her. Alexa kept at pumping 2 hours round the clock for weeks and was able to provide her daughter with the milk she needed. Charis spent 84 days in the NICU and has done very well. She had a difficult time coordinating her suck swallow breathe so Alexa was never able to breastfeed directly but was able to pump for a year. Charis needed a G-tube placed until she could learn to eat from a bottle but they were able to remove it at around 6 months. Other than a little speech delay, Charis is totally caught up. Alexa, like many twin loss moms, has struggled with how to grieve and also raise a child. With NICU life and the busyness of everyday, once they were home she didn't feel she got to grieve until almost a year after Kathryn had died.  The bittersweet reality of having a surviving identical twin who she knows looks just like her daughter she lost has been both a blessing and a curse.

Alexa has struggled with her body image for some time and has felt that at a such an important time her body failed her. Still, she has been inspired by so many others and wants to send a positive message and spark a positive conversation with her children about their bodies strength and beauty.

Alexa has devoted much of her life to raising awareness of Twin To Twin Transfusion Syndrome, Prematurity and Loss. She has just recently published an amazing book, "Sunshine After the Storm: A Survival Guide for Grieving Mothers"

Marisa James

The magnificent Marisa James with her identical twin daughters Isla Blake and Thea James (20 months). Marisa is a self described planner and she gave herself three months to conceive during her final year of Law School. She was able to get pregnant quickly and learned very early on that she was carrying twins. She was able to continue her schooling throughout her pregnancy and feels it's important for women to realize that they don't have to choose between career and family, they can do both. She didn't particularly enjoy her pregnancy and never had any expectations of a vaginal birth. While it may have been an option she liked that she could know the date her babies would be born and avoid the pain of labor. Marisa learned that she was having identical girls and that they had a bit of growth difference. They were diagnosed with Twin to Twin Transfusion Syndrome (TTTS) but didn't move past Stage I. Despite hoping to plan all that she could she ended up on hospital bed rest and would have been there for about 6 weeks but her girls decided to come early after Thea broke her water at 35 weeks. Marisa's birth went well and her daughters went to NICU where Thea spent her first 7 weeks of life and Isla came home after an 8 week stay. She says that the NICU stay was good in that she got time to recover and the nurses helped to get her girls on a schedule but having to leave them every night was difficult. Marisa finished Law School about a year ago and will be taking her bar exam in just a few days.

Kaye Parker

The amazing Kaye Parker. Kaye is mom to identical twin boys William (pictured - 3) and Tyler, who passed away due to complications from Twin to Twin Transfusion Syndrome (TTTS). She was very sick throughout her pregnancy and by her second trimester, was measuring very large for dates with her boys and was painfully suffering from Polyhydraminos (excess amniotic fluid). Kaye searched for answers with her medical team, and they eventually referred her to a hospital in Auckland where she was diagnosed with TTTS at 19 weeks. She was referred for laser ablation surgery and drainage of fluid, both of which were successful. At 22 weeks she was diagnosed with pre-eclampsia and was told that she might have to deliver, and her boys would not be able to survive. The goal was to get them to at least 24 weeks and 500 grams before delivery. At 23 weeks they were both over 600 grams and if they had to deliver they'd attempt to save them. Shortly after, her suspected pre-eclampsia went away, leading doctors to believe it may have been a mirror syndrome related to her laser surgery. Everything was going well from then until 27 weeks. Kaye had a midwife appointment on the 5th of January, where there were two heartbeats, and everything was fine. Two days later she had a scan and learned that her son Tyler's heart had stopped. William had suffered from increased blood flow and enlarged ventricles in his brain due to Tyler's passing. They booked her for an MRI and the morning of, she went into labor at just under 30 weeks. The boys were born via emergency cesarean with William needing forceps assistance and weighing 1.6 kilos and Tyler weighing just 935 grams. William had to spend the next 10 weeks in the NICU and had a difficult journey learning to grow and breathe and eat on his own. He coded completely and had to brought back to life just as his brother Tyler was being buried. Kaye has a had an understandably difficult emotional recovery. Physically, she has struggled with thyroid and iron issues since the birth of her boys. She is hoping that her participation in the project will help mark the start of a new, positive and healthy beginning for herself and William.