Did you know that 100% of funds raised from Charlotte & Théo’s Butterfly Run Ottawa/Gatineau go to Roger Neilson House?
That means that 100% from every cent raised through your registrations and fundraising efforts supports palliative care and bereavement programs at Roger Neilson House. We at The Butterfly Run do not take a single cent of these funds. Instead, we rely on sponsorships and our separate fundraising initiatives (ex. the Silent Auction) to cover the overhead costs of the Run, because we want to ensure that all of your personal registrations and fundraising efforts go directly back to supporting those in our community!
Why do we choose to support Roger Neilson House?
For starters, Roger Neilson House offers palliative care and bereavement programs for parents, grandparents, and siblings who lose a pregnancy after 20 weeks of gestation, a child at birth, or within a year after birth.
Secondly, Roger Neilson House has provided a huge amount of support to our community and many of our Committee members would like to share what this support meant to their families.
“We had never heard of Roger Neilson House. After receiving Charlotte's terminal diagnosis, we met with the Palliative Care Team from RNH to make the best medical decisions for Charlotte. Luckily for us, Charlotte defied the odds and managed to breath on her own. After making it through the night at the NICU we moved to RNH. Expecting to only stay for a matter of hours or a day, we were blessed to live there with Charlotte for 37 days. We were able to live like a family while Charlotte received the medical attention she needed.
During our stay at Roger Neilson House we lived as much as we could, we had late night walks, showers, story time, mommy and me yoga, wished on a shooting star and watched movies. We celebrated Thanksgiving, Charlotte’s 1 month birthday and Halloween, where she got to dress up, decorate a pumpkin and go through a haunted house.
Roger Neilson House will always be Charlotte's home. She now has a star there to mark her place in the house. We are so thankful for our time at RNH, as well as everything they have done for us since. I attended the Perinatal Loss Bereavement Group, received one on one counselling and have recently started going to the Pregnancy After Loss Support Group.
I am honoured to be co-chairing Charlotte and Théo's Butterfly Run, in Charlotte's memory. Knowing every dollar raised goes to RNH and the wonderful programs and supports they offer families in the most difficult times.”
Anne-Marie Warren, Charlotte’s mom and Co-Chair of Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“Roger Nielson house is so much more than a care facility. What they offer is so much more than programming and support. They give hope. They give community and they create legacy.
After our son Théo passed away unexpectedly on October 26, 2017, at only 8 hours old, we were forced to return to our home with empty arms. We were left feeling alone to put back the pieces of our broken hearts and dreams. The loss of our son was devastating. We didn’t know how to move forward in this new reality of life as bereaved parents. Thankfully, a few days later we were put in contact with Carol, a social worker from RNH. Carol made sure we were well supported. She told us about all the different services they provide. We were enrolled in a perinatal loss group, as well as counselling as a couple and independently.
It was in the group where I met my Sisters In Loss, four other women in similar situations to mine who are also on this journey as newly bereaved families. This community has transformed my experience and I have RNH to thank for this.
I can’t imagine this journey without the comfort that Roger Nielson House has provided us. I’ve learned that my grief comes from a place of pure love for my son. I’ve found a place for all that love to go now. It is my hope that through Théo’s Butterfly Run this year, his legacy can be making this support more widely available and accessible.”
Claire Pagé, Théo’s mom and Co-Chair of Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“We lost our our son Carter at 38 weeks to an unexplainable stillbirth. When we started our search for grief support there was only one place that recognized our situation and offered us support and that was RNH. We received family counselling, one on one support and were matched with another bereaved family so we could connect with people who truly understood what we were going through. Carol and her team also provided support during our rainbow pregnancy as that journey (although different) was equally as hard emotionally as our loss journey. I became involved with the Butterfly Run as I knew that every penny raised from the race registrations would go directly back to the team that helped our family heal.”
Julia Winslow, Carter’s mom and Run Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“Roger Neilson House proved to be lifeline in a hopeless situation when my husband and I learned that our son would be born with a severe heart defect. We had made the plan to palliate our son Lachlan, and the doctors and counsellors at Roger Neilson House helped us in this difficult time. Through counselling I prepared for Lachlan's birth and what his short life would look like.
As it turns out, Lachlan would die on the very day he was scheduled to be born. He was born at 38 weeks stillborn. The Roger Neilson House staff continued to provide support to us - arranging a photographer, and doing hand and feet casts for Lachlan and his big sister and brother.
In the months following Lachlan's death my husband and I received both individual counselling for our grief and began attending a group bereavement group at Roger Neilson House. Our 5 year old son Lucas also attends the sibling bereavement group offered, and he loves going and getting to talk about his little brother.
I don't know where we would be without the support and guidance everyone at Roger Neilson House has provided us.”
Emily Cordonier, Lachlan’s mom and Media Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
“We unexpectedly lost our son Trevor at 35 weeks after going into labour and arriving at the hospital to find no heartbeat. Upon delivering the placenta the cause of the Trevor's loss became quite apparent, I had had what is called a silent placental abruption. The doctor told us there was a blood clot almost the size of the placenta and if it had reputed, I very likely would have died as well. In the weeks that followed Trevor's loss I had completely shut down and wasn't functioning. I don't recall much of it or how we were connected but I was put in contact with RNH. At the time a perinatal loss bereavement session was running and Carole told me I could join even though it had started already.
I joined. I met other Moms and a couple who had experienced stillbirth and for the first time I wasn't alone. Yes I had my husband but his way of dealing was to bury himself in work after the funeral.
The weekly sessions continued and I began to open up about Trevor and we talked about how our baby's are still part of our families and ways to honour them and include them. I slowly began to heal. After our session was over my husband who wasn't able to attend the bereavement session and I were able to see a social worker together as a couple. We didn't know how to talk to each about Trevor and I was starting to notice the strain this was putting on our marriage. Our social work was absolutely amazing she helped us is so many ways and ways we didn't even know we needed help.
A star ceremony was held, and a star for Trevor was added to the wall. Every Christmas we go now for the tree ceremony and our two girls, one our rainbow baby and one the big sister make decorations for the tree and then get to place them on the tree.
Even now I will periodically email back and forth with our social worker or I pop in to see Trevor's star on the wall. I hope our oldest will be able to attend the sibling program when she is a little bigger. She is starting to talk about Trevor a lot even though she was only 13 months old when he was born.
RNH has become such an important place in our families lives. I support them and the Butterfly Run so that no family experiencing loss has to be alone and has access to such an amazing resource and community.”
Sarah Dykstra, Trevor’s mom and Fundraising Director for Charlotte & Théo’s Butterfly Run Ottawa/Gatineau
Thank you for supporting Charlotte & Théo’s Butterfly Run. It is our hope that through fundraising and awareness building, we can better support individuals and families who experience miscarriage, the loss of a child, or infertility.
In hopes of supporting other families in their grief, we make an effort to share personal loss stories from our Committee and members of our community. Today Melina, a local member of our community, shares her story about the loss of her daughter Rosa. Please read her story, in her words:
Our Angel Baby
The minute I found out I was pregnant for the first time, I was in love. Words cannot describe how happy my husband and I were. My first pregnancy, a baby girl, healthy, strong, and very active! We named her Rosa Leia as in Princess Leia.
For the first month we didn’t tell anyone because we wanted to wait for Christmas to surprise just our immediate families. So for my family we were all sitting down for Christmas eve dinner, I stand up saying I want to take a picture of everyone. They ask what about you? I say well I like taking pictures not being in them. So they let that go and little did they know I was videotaping. Now that everyone’s ready, I say everybody say Melina’s pregnant. Everyone went silent, and then they freaked out once they realized what I said and that it wasn’t a joke. Lots of excitement! For my husband’s family it wasn’t the greatest situation as we were with his family at his grandmother’s funeral. We didn’t want to say anything right then because we didn’t want to take any focus off of her. But my mother in law was too excited and she made an announcement, but it brought a smile to their faces.
Everything was perfect, three months in we are in the clear yyayyy!!! (So we thought) So we announced it to all of our friends and family on Facebook. We did Facebook live for the gender reveal even though my husband and I already knew, it was a surprise for everyone else. She was very active in the ultrasounds, and her heart was very strong. She was still too small for me to really feel her though, only once I felt butterflies and one time I felt a kick, so it was nice to see her move in the ultrasounds.
Everything was going well until nineteen weeks. We had an ultrasound and she was active and healthy but little did we know until a couple weeks later, (it was so long due to poor paper work at the ultrasound office.) We found out that she was behind in several measurements, so I was told to book a follow up ultrasound at The Civic hospital which is where they send you when they are worried about the baby, which I didn’t find out until afterwards. So I was worried but didn’t think anything too bad and I pushed the fears as far down as I could so I wouldn’t stress. I talked to several moms and they said their babies were smaller on the scales as well and they came out perfectly healthy. Also I kept feeling her move, well what I thought was her moving at the time ended up that it was just her tiny little body moving downwards as my body I guess knew that she was supposed to come out. So sitting in the waiting room for our ultrasound, I rub my belly and say I know you are ok, everything’s ok. So we finally get called in and we were asked why we were there, so we tell her because her measurements were behind, but we didn’t find out until weeks later due to poor paper work otherwise we would have come in earlier. She says ok no problem let’s take a look. So she puts the screen on and starts moving the camera around and she’s not saying anything but she had just started. I asked oh is that her femor, she is still silent and in a low voice, yes it is. She clicks a few buttons, takes a measurement, I think looking back now taking the measurement was just for show. She says I’ll be right back I have to go get the doctor so she can talk to you. And I ask is everything ok? She says the doctor will go over everything with you. My husband instantly says something is wrong, I just kept say no no, everythings ok. So we ended up having to wait over an hour or so for the doctor to come talk to us. So the doctor arrives and she sits down and the nurse closes the door. She looks at me and says I’m sorry I have to tell you this but your baby doesn’t have a heartbeat. I looked at her and said what do you mean, she says it looks like she has been gone for a while. I was in complete shock, then boom I lost my mind and cried like crazy. My husband hugged me and rubbed my back and I just couldn’t breathe properly because I was crying so hard. Once I finally calmed down a little, I asked what happened to her. The doctor couldn’t answer that since you can only see so much in an ultrasound. She said once they do an autopsy they will hopefully be able to tell you what happened. I was past 20 weeks so I had to give birth to her. She then asked me if I wanted to wait or get induced right away. I said right away as I felt she did not belong in my belly anymore. So I was to be induced the next morning. After we left the hospital, I started calling my immediate family, so one by one I said the same thing. “We lost the baby.” I was so numb, yet couldn’t stop crying. We stopped in to see a family friend who we know had a miscarriage many years ago, to get hugs and a little advice. When we got home my sister was already at our house, I went straight to my room with the first teddy bear we bought for Rosa and just squeezed it and laid on the bed crying while my sister rubbed my back. All I could say was why would God give her to me and wait so long before taking her from me. She was healthy, what happened? I don’t understand, I’m so angry!! What did we do to deserve this? I just don’t understand! The rest of my family came over to show support and give big hugs, thankfully we have a very good support system.
May 24, 2017 exactly three months before Rosa’s official due date, we go into the hospital at 10 am to be induced which wasn’t until 12. As we walk in on our door was a picture of Angel wings so people knew not to just walk in and disturb us. My parents met us there and spent the whole day with us. My sister, brother, sister in law and one of my closest cousins came to support us. Contractions were pretty far apart and pretty easy for quite a while, but at one point I had to get shot for the pain cause they were getting pretty strong. As everyone was still there with us, the nurse came in and asked if I wanted to hold her once I delivered her, I looked over and my cousin started crying and left the room, everyone else started crying. I said I am going to go with your experience/judgment call. If you think she looks so bad that you think it would scar us for life (because well we weren’t quite sure how long she was gone for so we didn’t know how she would look.) If you think it’ll be ok for us to see her then I definitely want to hold her. As my contractions started to get stronger everyone left, except my parents. It got to the point the pain was very intense so the nurse called for an epidural but it was too late. It was one big contraction, so my mom ran to tell the nurse its time. The nurse cancelled the epidural came in with what she needed and she had enough time to put that pad to catch liquids under me, and turned the light off and closed the curtain, as she sat down I gave a good push and out came my baby girl. Still in the sac. The nurse had to break the sac to examine Rosa which took a bit of time but I couldn’t see anything cause my legs were still up. The nurse said she looks really good do you want to hold her, and I shot my hands out to grab her. The first thing I did was cry really hard and just tell her how sorry I was for not being able to protect her like I felt I should of; I was her house and I felt like I didn’t do the one thing I was supposed to be able to do. Then once my eyes dried up and I really looked at her, she was absolutely beautiful. Even though I knew she was gone I had stopped crying and I was content in that moment holding my daughter. I stared at her and looked at my husband and I said “she has your nose”. I had to convince my father to come around the curtain to see her as he was so hesitant to, but he did and he said she looked like my husband. She was absolutely perfect. Physically there was nothing wrong with her, she was just tiny 1lb, 11 inches long. And already had thick black hair. No wonder I had heart burn. The nurse took pictures of her and took her hand and foot prints for us. I held her for 12 hours and all I could do was stare at her all night. I was so scared something would happened to her, so I kept her cuddled in my arms and I continued to stare.
In the morning they asked if we wanted someone to come in like a priest. We had a minister come in to say some words to send her little soul to heaven. I looked at my husband and said you need to give me a time we need to leave otherwise I will not be able to let her go. The nurses said we could take all the time we needed. But we knew the longer she was out of me the faster she wouldn’t look like herself. So he said 1pm, so as it got close I put her down for a minute so I could go to the bathroom and get changed. Even that one moment hurt my heart being away from her. Once I came back out I held her in my arms again staring at every single inch of her body. Wiggling her toes and kissing her nose. My husband held me as I held her and we both told her we loved her so very much and that we will miss her and that we would see her again one day and hoped that she would look over us. As I was crying again I kissed her several times and put her down so the nurse could take her away. The nurse asked if we were sure we were ready and I said yes cause if it’s not now I’ll never leave. The nurse took her out of the room, my husband and I just held each other and cried. We left the hospital and went straight to the funeral home to choose an urn for her. Once we were down there, we stopped at a plant nursery and we choose a beautiful baby lilac tree, so it’ll grow over the years as Rosa would have, we also bought an angel statue for our garden.
Once we received our daughters ashes, we planned a memorial service in our back yard in front of her tree with the same minister that sent her soul to heaven. Lots of friends and family came to support us to say hello and goodbye to our Rosa Leia. Once we finished outside everyone followed my husband, Rosa, and I as I was holding her little heart urn. We stood in front of the fire place and had everyone light a candle that laid out to spell her initials. The light ceremony would light the way so she knew where she could come to visit us. As the last words were spoken by the minister, I was numb the rest of the day, just going through the motions. Thankful for everyone who came, we were also glad that it was just us now. Be able to mourn without people saying how sorry they were, and their “advice” and “comforting words”. I told everyone to tell everyone to not message or call us until we were ready because we did the memorial for Rosa to say goodbye but too also be able to get all that out in one day and not have to deal with the sorrys constantly every day. Well that didn’t work, everyone finding out wanted to pass on their condolences and their “advices” anyways. We knew that it was all coming from their hearts and loving place but when you are so sad/hurt/angry you don’t’ want to hear any of it. Especially that “Oh you can have another one” “Oh I know someone who had ex amount of miscarriages and now they have healthy babies” Well good for them, at this point I don’t care I’m sad and nothing anyone says will change that I lost my daughter, she is not an accessory that I can just go buy another one. I created that beautiful girl and she is no longer with us and I don’t understand. “Oh shouldn’t you have known, did you feel her stop moving, did you this or that” If I for one second thought there was something wrong with my baby girl I would have been straight to the emergency room. As I did at 6ish weeks when I had a major cramp that scared me, so I freaked out and we went to the hospital. So thank you for making me feel worse then I already do because you didn’t take the time to really think about the words that are coming out of your mouth, and take into consideration of what my husband and I are going through. I have gone through every minute of my pregnancy through my head, trying to figure out what I think I may of done wrong or could have done wrong or could have done differently through the process. Over and over again, so I’m putting myself through enough punishment on top of my mourning, I don’t need people that have never experienced what we are going through putting their two senses in. I know that seems harsh but that’s exactly how I felt at the time. But I know I followed everything to the book, the doctor said I did nothing wrong and she was healthy, so I’d still like to know why would all of a sudden God would take her from me, maybe one day we will know.
We went to the doctor’s to find out the results of the autopsy, and results from my blood work. We were lucky and I say that cause I know there are many people who don’t find out what happened to their babies. It ended up being what the doctor said was like winning the lottery in a bad way, it was a very rare occurrence that happened. The umbilical cord was longer than normal and because she was so active and so small and had so much room to move around, she ended up twisting the umbilical cord into a small knot somewhere along the cord to the point that she was no longer able to receive what she needed. Also the doctor reassured me there was nothing I could have done, and that I did nothing wrong. My blood work was all perfect, I didn’t pass anything on to her, it was just pure bad luck. No matter how much the doctor told me, and science told me I did nothing wrong, and there was nothing I could of done to avoid the situation, it still didn’t take away the feeling of guilt. I felt like I should have been able to save her, to protect her. Still to this day over a year after her passing I still feel like something could have been done to save her, especially if we received the results from the ultrasound at 19 weeks when she was still alive. I truly believe we could have at bare minimum had a fighting chance to save her.
Two weeks after giving birth to Rosa I went to see my psychologist to let everything out and to make sure I was dealing and mourning in a healthy way. I was so very numb and went through crying spells every day. I didn’t want to talk to anyone or see anyone, I just wanted my baby girl. Our first grocery trip was pretty bad, we were good until we past the baby section and I just completely broke down. Then seeing people with their babies for the longest time just killed me and I would just cry and want to scream. As much as everyone close to me wanted to make things better they couldn’t, I just had to emotionally and mentally get to a place that I could think about Rosa and be sad but be able to start moving forward with life. My husband kept telling me she wouldn’t want us to be sad all the time because it’ll make her sad. I think about her every day. She stole a piece of my heart and took it with her to Heaven.
Losing Rosa was not only difficult for my husband and I but both our families as well and we all mourn differently. I went to see my psychologist to make sure I was mourning in a healthy way, and just having that ear to talk to that isn’t part of the situation made things a little easier, having his advice opened my eyes a little more. So I wrote Rosa a letter and made keep sakes, for instance I have a necklace with her last ultrasound picture on it with her name with a little angel wing. I also bought a ring with her name and birthstone, I also bought a second urn so when we decide to, we can bury one and keep the other. I also created a memory box, to put the keepsakes, and first things we bought for her. Signing up for a run, Aaron’s Butterfly run, to help raise money for other families like ours was absolutely amazing. Not only did we help raise money but we walked for Rosa and her memory as we are doing again this year and every year the run is on. Soon once I am officially done breast feeding I am going to get a tattoo in her memory, she will always be in my heart but I want to where something proudly every day for the rest of my life to represent her beautiful life. I’d rather have her then keepsakes but if that’s what I have and I can do to make it easier for myself I will do it. I am doing and will continue to do what’s best for myself to get through the day without my daughter. Everyone will have their opinion about when you should be done mourning, or when you should be moving on, or how you should be mourning but you know what, you do what’s best for you and it may take longer from someone to be “ok” then it was for me but it’s no one’s business to tell that person to move on before they are ready to. It's all about learning to live a new normal. My life will never be the same and nothing will fill the void. So all I can do is continue doing the things I have doing like making her birthday special each year.
Rosa’s first birthday was this past May 24th 2018, we went outside and stood in front of her beautiful lilac tree and wished her a very Happy birthday and told her how much we miss her and love her. We bought her a little cake and on it one candle lit. As I was holding her little brother who was 6 days old, my husband got me to blow out the candle. We put the candle in front of her urn that sits on our fireplace and as I looked into my son’s eyes I broke down and cried. He has my husband’s nose as Rosa did, so when I look at his nose I think of her. We will continue do make her birthday special no matter how much time has past.
When people ask is this your first, talking about my rainbow baby. I look at them and say my first living baby, I delivered my daughter stillborn last year. To be honest I don’t care if it makes other people sad or uncomfortable, they asked how many children I have and I have two. One is an Angel baby and the other is a rainbow baby. My daughter will never be forgotten, I will make sure to make her passing mean something. I will not sweep this under the rug as it never happened, I will talk about her proudly and I will make sure her little brother, knows all about his big sister in Heaven.
Every day is hard because I’m missing a piece of my life, a piece of my heart. There are days I still break down, and just hug my husband and say I want her back. When I am in the kitchen I always stare out at her lilac tree, and it always make me smile. No matter where I go or do I think I would have loved bringing her here, and this would have been her first this or that. I wonder all the time what her personality would be like and who she’d end up looking like. All the things I’ll be able to do with my son I will always think I would have loved to be able to do this with her. My son keeps me busy but in no way has he replaced Rosa, but without her, my son may never have come to be. God has a plan and I know Rosa is looking over Landon as his guardian Angel. I still and will forever love her unconditionally and miss her so very much. I have my moments where I break down and cry because I want her here with me but it makes it a little easier knowing she is with lots of loved ones in heaven that are taking care of her and keeping her safe.
To my baby girl Rosa Leia,
I never thought I could feel so heart broken. As I watched my tummy grow and felt the little butterflies, my love for you grew stronger and stronger. I delivered you at 10:40pm on May 24, 2017 and once you were put into my arms I couldn’t let you go. You have your Papa’s nose, such a cute little nose. I wiggled your tiny fingers and tiny toes. I’ve never felt so content in a moment as much as the moment I first held you. I feel so empty without you. But just know Mama misses you and loves you with every fibre of her body and soul. God has a greater plan for you even though I don’t understand nor do I like it. I have faith that you are in good hands in Heaven with all your family and friends. As you were so loved here on earth you are so loved in heaven. Please watch over us baby girl. Until we meet again my sweet daughter, my beautiful Rosa Leia!
Thank you Melina for sharing your story with us. xo
Unfortunately, many of our Committee members know all too well the pain of the issues we support - pregnancy loss, child loss, pregnancy loss, and infertility...
Sarah Dykstra is the Director of Fundraising for Charlotte & Theo's Butterfly Run Ottawa/Gatineau. She chose to share her personal story of her struggles with infertility, the loss of her son Trevor, and her difficulty with pregnancy after loss.
Thank you for sharing Sarah. And thank you for doing so much work to support Charlotte & Theo's Butterfly Run Ottawa/Gatineau!
Here is her story:
Our journey began after we were married in 2007. A year or two after I finally went to the doctor because my periods were crippling and up to that point everyone's solution had been the birth control and I was put on the “pill”, kinda counterproductive if you want to start a family. My doctor sent me for and ultrasound. After the ultrasound the nurse at the doctor's office called and told me I would never be able to have kids and set up an appointment to talk to the doctor. The doctor told me I had a heart shaped uterus and that would prevent me from having children but he was sending a referral to the Ottawa Fertility Clinic to see a fertility doctor. I was devastated! At the time we weren't ready for a family but also weren't preventing it to happen.
My husband Kevin and I went to see the fertility doctor and he said that everything looked normal with my uterus, the top was very slightly curved in but not enough that it would affect my ability to carry a baby. He proceeded to run the standard battery of fertility tests on both of us. It was discovered that I had PCOS (poly cystic ovarian syndrome) and I would likely need help to induce ovulation when we were ready to start our family.
We contacted the fertility clinic in 2012 and it took almost a year to get in. I started fertility treatments which involved taking a drug called Femera. Femera is a breast cancer drug that was discovered to have a side effect of inducing ovulation, we had to sign a whole pile of waivers because we were using the drug off label and because it carries an increased risk for birth defects. The first two rounds were unsuccessful. The third round we got pregnant. We started ultrasounds to make sure everything was good, the first ultrasound showed the baby's heart rate was 78 bpm and I was so thrilled and excited to see the tiny little heart beating. Then we went upstairs for the follow up with our fertility doctor only to have my excitement shattered. Our doctor told us the heartbeat was too low and that there was a very high probability that we would lose the baby. He scheduled a follow up ultrasound the following week. On April 16, 2013 we went to the ultrasound very anxious about the outcome. The ultrasound was devastating. It showed that the baby had stopped growing 3 days before and there was no heartbeat. I was devastated, the ultrasound tech was amazing and she took us up the back stairs to a private room to wait to talk to the fertility doctor. He came in to see us a while later. He explained to us that it was most likely a chromosomal problem and the pregnancy terminated because the baby wouldn't have survived and stressed it was absolutely not my fault and there was nothing I could have done to prevent it. Then he asked how I wanted to proceed and gave me the options to have a D&C, wait for the miscarriage to occur on its own or drug induce it. I opted to drug induce it because I didn't want to wait for the miscarriage to happen in its own.
A month and a half to two months later I got my period again and I called the fertility doctor and we decided to go ahead and start treatments again because we didn't know when I would next get my period. This time we were successful on the second round. The first ultrasound revealed twins!!! We went for a follow up ultrasound 2 weeks later and it was discovered we had lost one of the twins a few days earlier. My first reaction was relief because I had no idea how I was going to manage twins, then I had overwhelming guilt for feeling relief. I was upset that we lost the twin but was also very relieved and happy the other one was doing very well. We trucked along with the pregnancy with horrible morning sickness and tons of vomiting until just after Christmas 2013, I was due April 17th, 2014. Jan 27th, 2014 I woke up in the middle of the night and felt like I peed the bed, being super tired I fumbled to the bathroom in the dark. By the nightlight in the bathroom I could tell when I wiped the colour was wrong and I turned on the light and it was blood soaked and there was blood on the floor and a trail down the hallway to our bedroom.
I screamed for Kevin to find my pants and I put on a pad and grabbed a towel for the car seat. We drove to the Civic Hospital in dead silence both of us fearing we had lost the baby for sure. We got to triage and I told the nurse I was bleeding. She took me into triage and asked how bad. I pulled down my pants and they were soaked. She had me put them back on and took me to another room immediately where they did an ultrasound, confirmed my water broke but that baby was still alive. They gave me the first steroid shot for the baby's lungs, at that point I was 27 weeks and 6 days. I was transferred by ambulance to the General because the Civic can't handle babies under 30 weeks and they wanted me at the General before I delivered. The ride was bumpy and of course the highway on ramps were closed for snow removal that night. At one point the nurse landed on top on me in the ambulance and I went into labour in the ambulance. I arrived at the General, was admitted and completely terrified. At that point I was constantly on monitors and told they hoped I could make it 48 hours so I could get the second dose of steroids for the baby's lungs. At some point during the night I have a complete meltdown and the nurse came in to calm me down while Kevin was so exhausted he was asleep in the chair. I told her we didn't even have a name yet for the baby and what if he/she died all between sobs. She gave me a huge hug and said for now the baby looked great and that my contractions had stopped which were all good signs. She said the next goal was for me to make it to 30 weeks before delivering because then baby would have a really good chance for survival and likely not need to be on a ventilator very long if at all. Well time passed and I bounced back and forth between labour and delivery and the mother baby unit. I made it home twice on antenatal homecare, where a nurse came to my house every other day to check my vitals and monitor the baby. The first time I made it home for 3 days before I started bleeding again and had to go back to the hospital. The second time I made it home for 2 days and on Valentine's day I was admitted again because of bleeding. I spent the weekend in labour and delivery, Sunday they had discharged me from labour and delivery around 4pm but I told the nurse I was cramping really really bad. They decided to keep me and by 8:30pm I was 5cm. I asked for an epidural and the anesthesiologist was asking me questions while the nurse was trying to put a clip on the baby's head because they couldn't keep he/she on the monitor. Kevin was answering the questions for the epidural because I was having back to back contractions and couldn't talk. The nurse got the clip on the head and then said I needed to push because the baby was tachycardic. I didn't know how to push being a first time mom, the nurse told me what to do, well 2 pushes later she was out born at 9:07pm February 16, 2014. She was immediately wrapped in a towel and run by the nurse to the NICU and we had no idea if she was alive or dead or a girl or boy. I went into shock, the resident couldn't stitch my tear because of how badly I tore and it was an hour before the fellow could come to stitch me up and by that point the freezing had worn off. They refroze me and stitched me up. I showered and then I was wheeled down to the NICU to meet our baby. I was terrified, I didn't want to go, I still didn't know what our baby was. We met our daughter for the first time with tubes and wires running all over. We named her Elizabeth because that was the only girl's name we agreed on. It was 47 hours after our daughter was born when I got to hold her for the first time. It was the first time I was able to feel any connection to her. Her CPap had been removed so we could see her face finally. She was tiny but at 4lbs 4oz she was big for 31 weeks and 3 days gestation. We spent the next 5 plus weeks making daily trips to the NICU to deliver milk and for the hope that this feed we would be able to feed her or that she would take her bottle. March 22nd, 2014 Elizabeth graduated from the NICU and came home from the hospital for the first time.
It was amazing and terrifying all at the same time. I had no idea how to look after a baby especially a preemie. We muddled through, we battled with reflux and later severe milk protein allergy. Trips to CHEO for dehydration when she would get sick and needed ivs to rehydrate her. Now she is almost 4.5 and she is healthy, full of life, personality, crazy energetic, fiercely independent and incredibly smart.
June 16th, 2014 my dad was diagnosed with cancer at 56. The secondary cancer was bone cancer and it was in skull, spine, ribs and pelvis. He was admitted on a Wednesday to start radiation on his back to help alleviate some of the pain. In hospital he rapidly declined. We went to visit him. On Wednesday July 16th, 2014 when Elizabeth turned 5 months old he passed away, just one week after being admitted to hospital.
We had a trip planned to Indiana already and my Mom told us to go even though it was shortly after the funeral. We went to Indiana to visit close friends and go to Gen Con. I wasn't feeling well and Maddie, my friend and also a nurse told me to take a pregnancy test. I said no way I am pregnant. Well when we got home I was still feeling crappy so I did. Kevin and I had had one night of comfort sex and voila I was pregnant. The pregnancy was nerve wracking. I was always worried something would go wrong and the baby would come early again like Elizabeth. At 23 weeks I lost my mucous plug and the next day I started having contractions. I went back to the hospital and they gave me steroids for the baby's lungs just in case and because I had already had a preterm delivery. I was on put on modified bed rest. I had an OB appointment at 35 weeks on a Friday. The baby’s heart rate was around 125bpm significantly lower than I had scene it before, normally it was around 160-170bpm but my OB reassured me that it was still well within normal limits as it was above 120 bpm. Everything looked great I hadn't had contractions in weeks and baby was looking good on the ultrasounds. Saturday night Elizabeth (“Ellie”) was up all night with a horrible fever and Kevin and I were taking turns cuddling with her. I hadn't noticed that the baby had stopped moving. Sunday morning I started having bad contractions again. It was March 22nd 2015, we had Ellie dressed up in a green onesie with a cupcake and a tutu on it to celebrate her being home from the hospital for 1 year. I told Kevin we needed to go to the hospital, he had breakfast, we left Ellie with his parents (we had spent the night at their place). We got to the hospital and in a triage room and the nurse went to put me on the monitor to check baby and she couldn't find a heart beat. I wasn't worried as this baby was always hard to find. She came back a while later and tried again, still nothing and she said she was going to have the resident come in with the ultrasound machine. By that point I was getting worried but not panicked yet. The resident came in and searched for what seemed like an eternity and finally said "I am sorry but your baby is dead." I started crying. They told us they would give us some time alone and then would come back in and talk to us. Kevin and I both cried and barely spoke to each other and both called our parents to deliver the devasting news. The resident came back in and told us we could go home until labour progressed. It was at this point I found my voice, piped up and said I was not leaving the hospital carrying a dead baby. We had to wait until after 3pm for an ultrasound tech to come from the General to the Civic to do an official ultrasound to verify the baby was deceased. After the ultrasound we called our minister. He came to the hospital around 6pm to start making funeral arrangements. The nurse was going to start the induction once Kevin and our minister left to hash out some of the finer details. The nurse checked me and I was about 3 cm. I went into full on labour before the nurse was able to get the IV in for the induction. The nurse called the doctor and then called our minister as Kevin's cell phone was dead. About 10 minutes after the nurse checked me and I was 3cm our baby was born at 7:03pm before Kevin made it back to the room. We had a baby boy and the doctor put him on my chest right away. He was beautiful and he looked identical to his sister Elizabeth except that he was much longer and skinnier. We named him Trevor after my Dad. His full name was Trevor Elijah Dykstra, his initials formed T.E.D. after my Dad who although his name was Trevor he had been called Ted since birth. We spent the night with Trevor and held him as long and as often as we wanted. Over night the nurse had cleaned and dressed him and made molds and prints of his tiny hands and feet. He was born at 35 weeks and 2 days weighing 4lbs 15.5oz. The delivery room was so quiet you could have heard a pin drop with the exception of my labour sounds. The doctors and nurses didn't say anything. I was trying desperately to cross my legs to keep the baby in long enough for Kevin to get back to the room but that was not meant to be. Trevor came out on his own after going from about 3cm to delivery in about 10 minutes. After I delivered the placenta the doctor told me I had had silent placental abruption, there was a blood clot almost the size of the placenta and it must have been between the placenta and uterine wall as it didn’t show up on the ultrasound. The doctor told me based on the condition of Trevor's skin the abruption had happened within the previous 24 hours. There were no warning signs and no bleeding.
Almost immediately after delivery my blood pressure sky rocketed and I developed post partum preeclampsia. I was put on medication for it. By the next afternoon after our parents had left and we had reluctantly said goodbye to Trevor, we left the hospital again without our baby, however this time permanently. This time heading to the funeral home to plan his funeral and burial.
We had a private funeral for our parents, siblings and grandparents. I don't remember much other than all the mud, the casket rocking back and forth on the green straps used to lower it into the ground and being terrified his tiny coffin would fall in that tiny hole. I remember the one line from our Minister’s message about how the rest of the world keeps on passing by like the traffic on the road in front of the cemetery oblivious to what has happened. I remember looking around at everyone else and everyone except Kevin and I were crying and Kevin was holding our 13 month old Elizabeth because she was fussy in the stroller.
Losing Trevor was devastating, I was angry at the world, I was pissed off with God for letting my unborn child die. I was totally unprepared for the resentment I felt towards Elizabeth for surviving at 31 weeks when Trevor died at 35. I blamed myself for not noticing that Trevor had stopped moving. We moved in with Kevin's parents for over a month after we lost Trevor because I was not functioning, I couldn't look at Elizabeth because Trevor looked so much like her all I saw was him when I saw Ellie. It took a long time for me to get over the resentment towards Ellie.
We wanted to try again right away for another but I had to wait for my gall bladder surgery because I was having weekly attacks that were landing me in emerge to control the pain. I developed gallstones while pregnant with Trevor.
We started fertility treatments again as soon as I was recovered from the surgery. We were fortunate and got pregnant on the first try. It was a singleton pregnancy which was also a relief. The getting pregnant was honestly the easiest part of the entire pregnancy for me. A few weeks in I started spotting so I went for a few early ultrasound to make sure everything was ok with the baby, it was thankfully. My fertility doctor referred me to an absolutely amazing high risk OB, Dr. El-Chaar. I was very apprehensive the first time waiting to meet her, absolutely dreading having to tell my whole history to yet another doctor who couldn't be bothered to read a damn chart. She asked me a few questions and I looked at my friend who had come with me, to find the will to tell my history one more time. After I started my OB interrupted me, not rudely but said she wanted to tell me what she knew and then I could fill in the blanks or missing information. I was floored, pretty sure my jaw actually hit the floor! I filled in a few minor details and then she proceeded to tell me what her plan was for monitoring of the pregnancy and extra testing she wanted to do because of the placental abruption. I was amazed and immediately trusted her, which surprised me because I felt severely let down by my old OB when I brought up concerns with Trevor they were just brushed aside.
The pregnancy proceeded with minimal complications and I have all the regular tests done, I had IPS testing done at the request of my OB. It was negative, my ultrasounds were good. I was nauseous and had horrible heart burn. In January around the anniversary date of when my water broke with Elizabeth my anxiety levels started going up and I was having horrible dreams all the time where something would go wrong with the pregnancy. My dreams later turned into PSTD nightmares. They nightmares were horrible, they were so real, I would wake up sweating, shaking and sobbing and sometimes screaming. One of the nightmares was I had gone to a regular prenatal appointment and my OB looked at me and said I didn’t look good. She put me in a wheel chair and wheeled me down the operating room. The room was ice cold and insanely bright and full of all kinds of people. She did an emergency c-section and there was no time so she just sliced me open and I could feel the incision and felt her pull out my baby and our baby was completely blue and which point I would wake up with goose bumps, ice cold, shaking and sobbing. My sleep began to dwindle, to the point where I was only getting at max 2 hours of sleep a night and having nightmares several times a week. After 2 months of this I was having headaches all the time. I had a headache that was on day 5 and Elizabeth was being exceptionally trying one Friday in March. I called Kevin at work and told him he needed to come home and watch Elizabeth because I just couldn’t handle any more. He came home, I went to the hospital to get help. I was admitted to hospital and stayed there for almost a week. I saw a psychiatrist who started me on anxiety medication. I was admitted the week before what would have been Trevor’s first birthday. I was given a day pass on Trevor’s birthday, we went to build-a-bear and built Trevor a teddy bear. Then we went to a florist to pick up yellow daisies to take to the cemetery when we went to visit his grave. After the cemetery we returned to the hospital and Kevin’s parents brought Elizabeth and we had cake to celebrate. I was released the next day I think.
The next bump in the road was during an ultrasound, when PACs were discovered. This required a non-stress test and an echocardiogram on the baby. During the echocardiogram it was discovered that the right side of our baby girls heart was bigger than the left and at that gestation they should have been the same size and she was also still having the premature atrial contractions. The pediatric cardiologist met with us and said we needed to have a follow up to see if anything changes. The follow up echo did not have any more PACs but the right side of the heart was still bigger than the left. The cardiologist wasn’t worried since the 2 ultrasounds between the 2 echos did not have any PACs either. The cardiologist said that as long as our baby passed the physical exam when she was born then no follow up would be needed.
We had episodes of tachycardia during other ultrasounds that would result in more NSTs (non stress tests). I finally got to a point in the pregnancy where I told my OB I could not continue with the pregnancy any more and we discussed induction. She wanted me to get to 37-38 weeks and I wanted our baby girl out before 35 weeks when lost Trevor. I told my OB that I trusted the NICU team to keep my baby girl safe and alive more than I trusted my own body. Our compromise to get past the 35 weeks was to schedule an ultrasound when I was 35 weeks and 2 days, the point where we lost Trevor. Around 34 weeks I was to the point where I needed and end date, a point where the pregnancy would be over so we set the induction date. It was set for June 19th. Sunday morning around 8:30am we got the call from the hospital saying we could come in for the induction. We got to the hospital and they put me on the monitor to see how baby was doing, she was tachycardic again. Then they resident brought in the ultrasound machine since our baby girl was acrobatic and would not stay head down, fortunately she was head down. Baby girl’s heart rate finally started to settle down so they proceeded with the induction. About 11:30am they started the cervidil to start the induction. They checked me again about 12 hours later to see how I was progressing and decided they needed to leave it in. I was getting uncomfortable and wasn’t progressing much so I sent Kevin home to sleep in a real bed, also so I didn’t have to listen to him snore. The nurse gave me pain meds so hopefully I could sleep overnight. They doctor checked me again in the morning and took the cervidil out and left me to see what my body would do on its own. I walked a fair bit. The doctor sent me for a big walk around lunch time, when we got back I went for a nap. I woke up around 3 and they decided to start oxytocin since they couldn’t break my water because the baby’s head wasn’t engaged and they didn’t want to chance the cord coming out if they broke my water. Around 5 I had a breakdown, I was sobbing, I was terrified that something was going to happen during labour and that the baby would die. The nurses sent the doctor away while this was happening to give me space and time to recompose. Around 6pm the pain was insane, about as intense as full blow labour with Elizabeth and Trevor and was only getting worse. I talked with my doula and my nurse (who I loved, she was amazing) and agreed with what they were saying that taking the epidural would take one stressor away and allow me to conserve my energy to cope with the other stressors. By 7 or 7:30 the anesthesiologist was there to do the epidural. Once through all the questions I was back on the bed and they had the bed jacked way up to do the epidural when over the PA system there was a message for the owner of vehicle such and such colour with licence plate such and such to move their vehicle. Just seconds after that message the anesthesiologist got a page that only Kevin noticed and he ran out of the room saying he had an emergency and he would be back. I was in agony at that point and asked for the other drugs. Within 5 minutes the guy was back to do the epidural his emergency was cancelled. Once the epidural was in and I started to get relief things changed so much. Everyone was talking and laughing. I was telling stories and making everyone laugh. Around 9:30pm my nurse called the doctor and they checked me, I was 9.5cm with just a lip holding my water in. The resident told me she wasn’t allowed to break my water without consulting the on call OB, she went to do that. She returned and then proceeded to break my water, it was the weirdest feeling ever, the resident was soaked because when she broke my water I was in the middle of a contraction and it sprayed everywhere. Shortly after that I told the nurse the baby was coming and she said she needed 5 minutes to finish up her paperwork and her prep for the delivery. My doula took a quick peak and told the nurse to get the doctor and NICU team in the room ASAP cause this baby was coming. They passed her up under my hospital gown and put her on my chest and she opened her eyes and looked right at me. They poked and rubbed her until she cried. I held her for an hour and she rooted immediately and started to nurse a little bit. My doula cut the cord. We named our precious baby girl Aurora Laelynn Marijke Dykstra. Aurora meaning dawn, and Laelynn flower of hope. We wanted a name that reflected new beginnings and the hope we had that things would be ok and safe with our new baby. Aurora spent the night in the NICU to monitor her heart to make sure that the arrhythmias she was having during the labour didn’t persist after she was born. Her blood sugars dropped so they brought her back to me in the delivery room to nurse her. Once she fed I showered and headed to my room in the mother baby unit. Our stay after that was uneventful and I couldn’t wait to go home. The morning we got to go home was super emotional for me, it was the first time that we were leaving the hospital after delivering our baby with our baby!
Please join us on Saturday October 13th, 2018 to honour Théo and all other butterfly babies gone too soon.
Today on the blog, one of our Committee members, Rachel Samulack (who was last year's co-Chair along with her husband Rob for Aaron's Butterfly Run), shares her thoughts on pregnancy after loss...
When Rob and I (Rachel) organized Aaron’s Butterfly Run in 2017, the committee wanted the run to be sustainable. Rob and I feel passionate about sharing Aaron’s story, but we know that there are many other parents out there who would like to share their butterfly babies. Our vision was that the run would have new chairs every year. This year, the Butterfly Run Ottawa/Gatineau is being held in honour of babies Charlotte and Théo. We are happy to see the run continue and the organizing committee is doing an amazing job of pulling the run together.
We lost our first pregnancy at 10 weeks in 2013. I first heard the term “rainbow baby” during our second pregnancy with our son Gabriel in 2014. What does the term rainbow baby mean? According to The Bump, "a rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come."
It took Rob and I time to decide to have another baby after Aaron’s loss shortly after birth in June 2016. We focused much of our grief and energy into Aaron’s Butterfly Run in October 2017, which was amazing as we met so many other bereaved parents and community was formed to support those experiencing infertility, pregnancy or infant loss. After the run was over, I experienced another early pregnancy loss in November. These losses have changed my life in more ways than I could have imagined.
Rob and I are now expecting another rainbow baby who is due in early October. I am conflicted about using the term “rainbow baby” with this pregnancy because I don’t think that Aaron’s life and death was a storm. My little boy taught me that we can love deeply without regret. He taught me that life can be hard, but that a mother’s love for her child transcends life on earth. I learned that we live in a balance. Life is so fragile and precious. Aaron was held and loved as he left this earth, which is all that any of us can ask for in our final moments. Gabriel asks about his little brother often and knows that they are both loved.
As I feel the flutters of our new rainbow baby, I am both scared and excited for the future. We went into our 20 week ultrasound with baited breath. The ultrasound technician knew about Aaron’s loss and quickly pointed out our baby’s kidneys (at 19 weeks' gestation we found out that Aaron was missing both kidneys which is incompatible with life after birth). The tears flowed down my cheeks for the rest of the ultrasound. Gabriel has asked us repeatedly if we will get to keep this baby. Honestly, I don’t know how to answer his questions.
Pregnancy after loss is challenging. People expect that you will be “fixed” because of the subsequent pregnancy, but that is not how it works. I have had a couple of people remark how happy we must be because we are now in the “safe zone.” Through my experiences and those of other bereaved parents, I have learned that there is never a safe zone. This pregnancy has been full of anxiety and I know that labour and delivery will have its own set of challenges. We are so blessed to have our families and friends, amazing midwives, our doula and the social workers at Roger Neilson House who have been supporting us through this pregnancy.
Carol Chevalier, one of the social workers at Roger Neilson House, along with students from the Master of Social Work program at Carleton University have recently completed a needs assessment on support for pregnancy after loss for bereaved parents who are considering pregnancy or are pregnant after perinatal loss. I have included an excerpt from the study below:
I am so thankful for the perinatal hospice and bereavement programs that Roger Neilson House provides for bereaved parents and look forward to hearing more about the creation of a program for subsequent pregnancy after perinatal loss.
On Gabriel's due date (he was four days late), Rob and I went for a walk and saw a beautiful double rainbow over our neighbourhood. I had no idea at that time that there would be another rainbow baby in my future. I am hoping that both of our rainbow babies will be with us to celebrate the lives of our butterfly babies at Charlotte and Théo’s Butterfly Run on Saturday, October 13 2018.
More resources for pregnancy after loss:
Amanda, our Director of Communications on our Executive Committee, has shared her story publicly a few times before. You may recall some of her past posts which you could check out here, here, here and here, if you’d like to catch up on her story.
Here’s what she more recently had to say:
Ps: Do you notice that we’re smiling in these photos? Although infertility really sucks, it does not take away from the fact that I still love my life. I have an amazing husband, dog, family, friends, job, live in an incredible city and country, and I still have lots of amazing experiences in my life! Infertility does not discount that and it does not define me. But at the same time, just because I have a good life, it does not make infertility any easier. In my mind, there is no “at least”... because growing our family is what we want most in this world. But with that said, don’t worry about us too much - we are good to go! I just wanted to explain how much infertility can really suck, even if life appears to still be all sunshine and rainbows in all other aspects.
THANK YOU so much to National Capital Doulas for sponsoring Charlotte & Théo's Butterfly Run Ottawa/Gatineau 2018!
We wanted to send them a big shout out of thanks, especially since we're excited to announce that they are our first official sponsor this year!
Want to know more about National Capital Doulas?
National Capital Doulas provide support during pregnancy, labour, birth, and parenting. Their professional teams work together in pairs to provide seamless support to women and their families in Ottawa and the surrounding area. With National Capital Doulas, you can expect the best in in-depth education, professional birth doula support, reliable rentals, caring postpartum doula services, and safe placenta encapsulation. They are modern doulas for the modern family. For more information, check them out on social media or on their website.
Interested in sponsoring Charlotte & Théo's Butterfly Run Ottawa/Gatineau 2018? Check out our sponsorship opportunities.
As you you know, the 2nd annual Butterfly Run Ottawa/Gatineau is scheduled for Saturday October 13, 2018. In keeping with last year's tradition, we've chosen to honour new families for this year's Run. As you most likely remember, last year's Run was Aaron's Butterfly Run, in honour of Rachel and Rob Samulack's son Aaron who passed away 100 minutes after birth. This year, we will be honouring babies Charlotte and Théo, along with their families, and of course, all other butterfly babies who were lost too soon. So please join us on Saturday October 13, 2018, for Charlotte and Théo's Butterfly Run / La course Papillon de Théo et Charlotte.
Charlotte's mother Anne-Marie Warren and Théo's mother Claire Pagé will be the Co-Chairs on our Executive Committee for the 2018 Run. Both Anne-Marie and Claire have chosen to share their stories about their beautiful babies gone too soon, in hopes of raising awareness around perinatal loss and supporting other families in our community.
Thank you Anne-Marie and Claire, for sharing your babies with us, and for helping us remember all butterfly babies who were gone too soon.
Special thanks to our graphic design partners:
Roger Neilson House is seeking feedback from members of the community on their experience with pregnancy following a perinatal loss. Their aim is to gather data that they will use to inform support services specifically developed to serve this population of parents.
Who can participate?
Participation is voluntary. Any parent can participate who is considering pregnancy, currently pregnant, or has been pregnant following the loss of a child and has completed a bereavement group at Roger Neilson House.
What is involved in participating?
You will be contacted via phone to answer questions regarding your loss and current status on your journey to have more children, which should take roughly 10-15 min. Following this phone questionnaire, you will be assigned to a focus group with other parents who are at similar points in their parenting journey.
If you are interested in participating in this research study, please contact:
613-523-6300 ext. 622