The doctor's at Women's hospital had suggested we return for a follow-up in two weeks time. I dreaded going back, as I did not want to relive my last experience - it was too painful. I couldn't manage any more bad news.
Brendon seemed determined to keep the appointments, and I felt he needed to have the chance to be there and ask some questions. The first ultrasound I had gone alone and the second my mom had been with me, but Brendon had yet to be at any of the appointments.
We headed up to Vancouver late Tuesday night after Brendon got off work. The Burgess' drove up to Kelowna to watch the other kids. We arrived in Vancouver at 2am and were able to sleep for 5 short hours before we needed to be off to the hospital. I felt a little calmer this time going into the ultrasound. I didn't feel like the news would be all bad.
I must have a really efficient urinary system because they kept asking me to go to the bathroom. I explained that I didn't drink the extra water and I had already gone just before the scan. No wonder I had to stop at every rest stop as a child.
She began the scan and I closed my eyes. This scan was for Brendon .... I didn't want to sit there wondering what I was seeing. The routine was the same as the last time. The tech did her scan and took her measurements and Dr. Pugash came in to do some further observation. I did hear some positive things as she explained things to her resident, but what I did look at of the scan didn't seem as clear as the previous scan - which worried me. Once she was finished she sat down to talk to us. She started by saying there were two things that really concerned her. Not again, I thought to myself. How could things get any worse? She explained that Sayde's head circumference had only increased 8 days worth in 14 days. This dropped her to the 12th percentile for head circumference. The percentile was not the concern, but rather the trend. She explained that there can be error in measurements, but felt that the consistency in the tech and the machine from one scan to the next, would have decreased that chance for error. She explained that while this was not yet a big issue, if the trend continued it would be a cause for great concern. I started to fear that my baby was not going to survive. She then explained that she was seeing tiny cysts on the frontal and occipital horns indicative of periventricular leukomalacia. Brendon and I both knew what this was. She seemed very jittery and uncomfortable as she was sharing all of this with us. Brendon, thankfully, asked her outright why she seemed to be holding something back. She admitted that she didn't want to sway us. Sway us how?, was Brendon's response. I then explained that whatever she had to say was not going to influence our decision to keep the baby. She seemed notably relieve and expressed that that made things a lot easier on her. She then more comfortably went on to explain that the signs that she was seeing were still very subtle. She admitted that most other radiologists likely would not have even picked up on them. She explained that things actually looked much better than she expected to see after two weeks. She hoped that the head circumference trend was a red herring and would correct over time. She seemed slightly more positive and we felt the tiny bit of hope we had been praying we would feel. We talked about the plasticity of the brain and the inability to correctly make a prognosis especially this early in the pregnancy. The baby had undoubtedly experience a brain injury. The early effect are evident. Thankfully the effects have remained consistent over time and have not become worse (as they expected they would). The head size remains a concern. The prognosis remains unclear.
The perinatologist was also more optimistic at this meeting and we were able to get many of our questions answered. She was able to help us move forward to the next steps in this pregnancy - regular ongoing care. She felt that at this point, we should plan on delivering the baby in Kelowna as she didn't suspect any special needs at the time of delivery or in the perinatal period. The only thing we need to be aware of is an increase risk of preterm labor due to it still being a twin pregnancy and delivery. This baby needs to cook as long as possible. She also echoed Dr. Pugash's suggestion to return at 30-32 weeks for a follow-up at Women's Hospital to reassess the growth and determine more accurately the needs or expected outcomes for this baby.
She also explained that for better or worse, they know a lot about this pregnancy. Unfortunately there is not much that we can accurately extrapolate from what we know and there is not much that we can do to change anything right now. Most babies who have experienced compromise to their brain in utero go undiagnosed until between 6months and 2 years when they fail to meet regular milestones.
The future for Sayde is still very unclear. Her disability may be significant or it may be very mild. I do feel excited to meet my beautiful little girl and to hold her and love her, and I now feel that despite the worry that I will continue to have, I can enjoy the rest of this pregnancy.
Saturday, May 28, 2011
May 19, Women's Hospital
I felt really uneasy about my appointment at Women's Hospital. Maybe it was because the last time I had had an ultrasound I had received the worst news a parent could hear. I tried to reassure myself that this was just a formality and that maybe it would help answer some of my questions. I hoped to be able to see baby A while it was still in the best possible state. The ultrasound tech in Vernon had avoided showing me baby A altogether.
The ultrasound seemed very long and detailed. She explained everything as she went along. It was good to see the baby moving and to hear the heartbeat and I felt somewhat relieved. She gave me a break and it seemed like she was going to write up her report and get the radiologist. She came back in and said she needed to check a few more things. She began looking at what I knew were the markers for down syndrome. She too talked about getting the films from my 8 week ultrasound from Lions Gate. She then went to get the radiologist, Dr. Denise Pugash. Dr. Pugash came in and spent what seemed like an eternity looking at my babe. She began to focus on the brain and seemed very concerned with getting a good image. I could tell something was not right. The scan quality seemed very clear and I could tell the ventricles were asymmetrical. As she and the tech talked back and forth I could pick up on some of what they were describing. Finally, she finished the scan and explained that they both felt confident that this was not, in fact a dichorionic diamniotic twin pregnancy as it had been diagnosed at Lions Gate at 8 weeks. This was a monochorionic diamniotic twin pregnancy - my identical twin girls. She went on to explain that the reason the radiologist in Vernon had a hard time finding a second placenta was because there was only one. She described the typical twin to twin transfusion complications that can happen with mono di twins, and suspected that this is what happened. The one twin had become the donor and the other the recipient. In such cases the donor baby begins to suffer and can eventually die. The recipient on the other hand, often receives and has to process and excess of fluid. When the first baby died, the was a rapid fall in the blood pressure for the surviving baby and she essentially experienced an ischemic injury to her brain. She demonstrated signs of significant early brain damage, and both the radiologist and the perinatologist who spoke to us later felt that the prognosis would be quite severe. They expected the baby to survive, but expected her to be significantly compromised. I was completely stunned. Some form of cerebral palsy is what they suspected.
The perinatologist offered the possibility to terminate the pregnancy, and seemed a little unprepared when I asked how things would proceed for the rest of the pregnancy. My heart ached for this little girl. I knew all to well, the challenges and difficulties these children and their families face. I also know that there is a huge spectrum of cerebral palsy, that the brain is very plastic, and that so many of the children I work with amaze the doctors all the time. And yet, the impression I got from the doctors was that I should expect the worst case scenario. I left defeated and powerless.
There were so many unanswered questions and so many thoughts and concerns. One thing I did know was that my life would never be the same. I do believe in miracles. I have great faith. A feeling of peace had entered my mind two days before and I couldn't quite explain it because at the time I felt like I had come to an acceptance of the loss of the first baby and I had no reason to expect anything else - why did I need this peace? Yet as I sat in the parking lot of Women's Hospital I now knew why. My life will never be the same, because whether we are never blessed to meet Sayde, whether she live only for a short time, whether she survives with mild or severe disabilities, or whether we experience a more profound miracle, this experience will change me and my family for the better. We will all be stronger, more compassionate, more tolerant, and closer than ever before.
I drove home with Keaton the following morning to be with my family in Kelowna.
The ultrasound seemed very long and detailed. She explained everything as she went along. It was good to see the baby moving and to hear the heartbeat and I felt somewhat relieved. She gave me a break and it seemed like she was going to write up her report and get the radiologist. She came back in and said she needed to check a few more things. She began looking at what I knew were the markers for down syndrome. She too talked about getting the films from my 8 week ultrasound from Lions Gate. She then went to get the radiologist, Dr. Denise Pugash. Dr. Pugash came in and spent what seemed like an eternity looking at my babe. She began to focus on the brain and seemed very concerned with getting a good image. I could tell something was not right. The scan quality seemed very clear and I could tell the ventricles were asymmetrical. As she and the tech talked back and forth I could pick up on some of what they were describing. Finally, she finished the scan and explained that they both felt confident that this was not, in fact a dichorionic diamniotic twin pregnancy as it had been diagnosed at Lions Gate at 8 weeks. This was a monochorionic diamniotic twin pregnancy - my identical twin girls. She went on to explain that the reason the radiologist in Vernon had a hard time finding a second placenta was because there was only one. She described the typical twin to twin transfusion complications that can happen with mono di twins, and suspected that this is what happened. The one twin had become the donor and the other the recipient. In such cases the donor baby begins to suffer and can eventually die. The recipient on the other hand, often receives and has to process and excess of fluid. When the first baby died, the was a rapid fall in the blood pressure for the surviving baby and she essentially experienced an ischemic injury to her brain. She demonstrated signs of significant early brain damage, and both the radiologist and the perinatologist who spoke to us later felt that the prognosis would be quite severe. They expected the baby to survive, but expected her to be significantly compromised. I was completely stunned. Some form of cerebral palsy is what they suspected.
The perinatologist offered the possibility to terminate the pregnancy, and seemed a little unprepared when I asked how things would proceed for the rest of the pregnancy. My heart ached for this little girl. I knew all to well, the challenges and difficulties these children and their families face. I also know that there is a huge spectrum of cerebral palsy, that the brain is very plastic, and that so many of the children I work with amaze the doctors all the time. And yet, the impression I got from the doctors was that I should expect the worst case scenario. I left defeated and powerless.
There were so many unanswered questions and so many thoughts and concerns. One thing I did know was that my life would never be the same. I do believe in miracles. I have great faith. A feeling of peace had entered my mind two days before and I couldn't quite explain it because at the time I felt like I had come to an acceptance of the loss of the first baby and I had no reason to expect anything else - why did I need this peace? Yet as I sat in the parking lot of Women's Hospital I now knew why. My life will never be the same, because whether we are never blessed to meet Sayde, whether she live only for a short time, whether she survives with mild or severe disabilities, or whether we experience a more profound miracle, this experience will change me and my family for the better. We will all be stronger, more compassionate, more tolerant, and closer than ever before.
I drove home with Keaton the following morning to be with my family in Kelowna.
Friday, May 27, 2011
Routine 20 week Ultrasound
On May 4th I spent a quiet morning to myself at the pool and eating lunch while Brendon took care of the kids. Just before noon I hopped in the car and drove up to Vernon for my routine 20 week ultrasound. My mind was preoccupied with finding a way to get through the ultrasound without wetting my pants. I am never going to drink the recommended amount of water again. It was such a beautiful day and I felt so lucky to be living in such a beautiful place.
I felt like a seasoned veteran as I sat in the waiting room anticipating a quick ultrasound, where I would find out the gender of my babes, and run for the nearest restroom. The tech seemed friendly, congratulated me on the twins and made small talk as she prepared for the scan. Throughout the scan she seemed to be focused on only one side of my belly. When I questioned whether both of the babies were now on the same side she glossed over the question. I explained that when my doctor had a difficult time finding both heartbeats the week before with the doppler he did a quick in-office scan and felt that he had seen both babies on opposite sides of my belly. She question how and when this occurred and kept on mumbling something about needing to get the 8 week ultrasound report from Vancouver. I assured her that I was sure of the dates. She avoided showing or explaining any of the details of the scan that parents generally love to hear, like here is baby A's profile and here is Baby B's. When she started to clean up I asked if she was able to tell the gender of the babies. She explained that she didn't get a clear image and would check again after I went and emptied my bladder.
I returned to the room and sat for several minutes before the tech came back with the radiologist. He quickly and abruptly stated that he had some bad news. My heart sank. Before my mind could run wild with possible scenarios, he explained that I was pregnant with twins, but unfortunately one of the babies had not survived. He was not sure when this may have happened, possibly 1-2 weeks ago, possibly longer. He did say that the one baby - Baby A - looked much smaller than the other. He seemed confused at the findings and stated that this was a very rare situation for a didi twin pregnancy at this stage in the pregnancy. He tried to make me feel better by saying that at least I had one baby that looked to be developing normally. He said they would contact my OB in Kelowna, the tech pushed some pictures towards me and told me the surviving baby was a girl, and they both left me to deal with my pain in silence. I wasn't even able to cry at first. I took only a few minutes, gathered myself up, grabbed my pictures and somehow managed the 1 hour drive back to Kelowna alone.
I spent the next hour in an examination room waiting to meet with my OB.
When he was finally able to meet with me he looked completely stunned. He was sure that this must have happened within the last 1-2 weeks. When I questioned what had happened when he did the quick scan 1 week ago, he admitted that it was possible that he saw the same baby twice!?! His only suggestion was that we book another detailed ultrasound at Women's Hospital in Vancouver to help answer any questions regarding the demise.
The week that followed was perhaps the most heart wrenching week of my life. I have never felt such complete loss and devastation. Of course my mind went wild reliving the last 2 weeks to try to identify what I had done to cause this to happen to my baby. Was it the two days we had spent dealing with mice when we first moved into our rental; was it when Keaton and I tipped into the railing of the pedestrian overpass while on our bike; was it the stress of my trip back to Vancouver the week earlier; was it the spin class I had attended last week; was it my slackness in taking my prenatal vitamins because every time I did they made me throw up?? It had to somehow be something that I did .... or didn't do. How could this happen while I was happily living my life. What kind of mother was I. My fairytale was shattered and I felt lost and confused.
I spent several days trying to deal with this confusing loss while accepting that I would continue to carry this baby for another 20 weeks. Would it be a miscarriage or a stillbirth? Would I have a baby to hold, or would it be gone? Would I have to decide what to do with the body? Would we name the baby? Would it harm the other baby?
Initially, I had a very difficult time even thinking about the surviving baby. She moves a lot and occasional would give me a good kick as if to say, "Mommy, I'm still here .... don't forget about me." However, my mind during these first few days was focused on my grief and loss.
Two days later I stopped my car next to the Mission Creek bridge and got out. I walked over to the railed pedestrian side walk. I remember thinking I should probably get off my bike and walk it across and then deciding the rails were close enough that if I went slow I could grab onto one of the rails if I needed to. Just as I approached the bridge my handlebar unexpectedly hit the left side of the rail and the bike tipped over to the right side. I quickly put my foot down to stop the bike and my torso bumped against the rail. Keaton, who was on the baby seat behind seemed to take the worst of it, but also seemed fine. I relived this event and wondered if this was what caused my baby to die. I didn't have any scratches or bruises, I didn't even really fall, but something had to be the cause. As I looked into the water I had a feeling that this was not my fault. This was something bigger than me. This was always the plan for this baby from before it was conceived. Although, my mind has gone back to this self blame occasionally, when I remember this experience I do feel some peace.
One day, within the first week, while I was lying in bed, I felt as if Baby A said to me, "Mommy I'm all right. Tell Sayde I love her and that I'm so sorry."
That is when I decided on the name Sayde, and I felt that she must be a pretty special girl to have her own guardian angel escort her to this earth.
My parents came up that weekend to help out and everyone tried their best to make Mother's Day less difficult for me.
I planned to return to Vancouver the next week with my Mom for my appointment at Women's - hoping to find some answers.
I felt like a seasoned veteran as I sat in the waiting room anticipating a quick ultrasound, where I would find out the gender of my babes, and run for the nearest restroom. The tech seemed friendly, congratulated me on the twins and made small talk as she prepared for the scan. Throughout the scan she seemed to be focused on only one side of my belly. When I questioned whether both of the babies were now on the same side she glossed over the question. I explained that when my doctor had a difficult time finding both heartbeats the week before with the doppler he did a quick in-office scan and felt that he had seen both babies on opposite sides of my belly. She question how and when this occurred and kept on mumbling something about needing to get the 8 week ultrasound report from Vancouver. I assured her that I was sure of the dates. She avoided showing or explaining any of the details of the scan that parents generally love to hear, like here is baby A's profile and here is Baby B's. When she started to clean up I asked if she was able to tell the gender of the babies. She explained that she didn't get a clear image and would check again after I went and emptied my bladder.
I returned to the room and sat for several minutes before the tech came back with the radiologist. He quickly and abruptly stated that he had some bad news. My heart sank. Before my mind could run wild with possible scenarios, he explained that I was pregnant with twins, but unfortunately one of the babies had not survived. He was not sure when this may have happened, possibly 1-2 weeks ago, possibly longer. He did say that the one baby - Baby A - looked much smaller than the other. He seemed confused at the findings and stated that this was a very rare situation for a didi twin pregnancy at this stage in the pregnancy. He tried to make me feel better by saying that at least I had one baby that looked to be developing normally. He said they would contact my OB in Kelowna, the tech pushed some pictures towards me and told me the surviving baby was a girl, and they both left me to deal with my pain in silence. I wasn't even able to cry at first. I took only a few minutes, gathered myself up, grabbed my pictures and somehow managed the 1 hour drive back to Kelowna alone.
I spent the next hour in an examination room waiting to meet with my OB.
When he was finally able to meet with me he looked completely stunned. He was sure that this must have happened within the last 1-2 weeks. When I questioned what had happened when he did the quick scan 1 week ago, he admitted that it was possible that he saw the same baby twice!?! His only suggestion was that we book another detailed ultrasound at Women's Hospital in Vancouver to help answer any questions regarding the demise.
The week that followed was perhaps the most heart wrenching week of my life. I have never felt such complete loss and devastation. Of course my mind went wild reliving the last 2 weeks to try to identify what I had done to cause this to happen to my baby. Was it the two days we had spent dealing with mice when we first moved into our rental; was it when Keaton and I tipped into the railing of the pedestrian overpass while on our bike; was it the stress of my trip back to Vancouver the week earlier; was it the spin class I had attended last week; was it my slackness in taking my prenatal vitamins because every time I did they made me throw up?? It had to somehow be something that I did .... or didn't do. How could this happen while I was happily living my life. What kind of mother was I. My fairytale was shattered and I felt lost and confused.
I spent several days trying to deal with this confusing loss while accepting that I would continue to carry this baby for another 20 weeks. Would it be a miscarriage or a stillbirth? Would I have a baby to hold, or would it be gone? Would I have to decide what to do with the body? Would we name the baby? Would it harm the other baby?
Initially, I had a very difficult time even thinking about the surviving baby. She moves a lot and occasional would give me a good kick as if to say, "Mommy, I'm still here .... don't forget about me." However, my mind during these first few days was focused on my grief and loss.
Two days later I stopped my car next to the Mission Creek bridge and got out. I walked over to the railed pedestrian side walk. I remember thinking I should probably get off my bike and walk it across and then deciding the rails were close enough that if I went slow I could grab onto one of the rails if I needed to. Just as I approached the bridge my handlebar unexpectedly hit the left side of the rail and the bike tipped over to the right side. I quickly put my foot down to stop the bike and my torso bumped against the rail. Keaton, who was on the baby seat behind seemed to take the worst of it, but also seemed fine. I relived this event and wondered if this was what caused my baby to die. I didn't have any scratches or bruises, I didn't even really fall, but something had to be the cause. As I looked into the water I had a feeling that this was not my fault. This was something bigger than me. This was always the plan for this baby from before it was conceived. Although, my mind has gone back to this self blame occasionally, when I remember this experience I do feel some peace.
One day, within the first week, while I was lying in bed, I felt as if Baby A said to me, "Mommy I'm all right. Tell Sayde I love her and that I'm so sorry."
That is when I decided on the name Sayde, and I felt that she must be a pretty special girl to have her own guardian angel escort her to this earth.
My parents came up that weekend to help out and everyone tried their best to make Mother's Day less difficult for me.
I planned to return to Vancouver the next week with my Mom for my appointment at Women's - hoping to find some answers.
In the Beginning
What a surprise it was to us all when I went for an ultrasound in early February and found out that baby I was expecting was not only fine, but there were actually two babies. I never expected to have twins. I wasn't sure if I should laugh or cry. After all, we had just purchased a new 3 bedroom home in Kelowna. Where were we going to store 5 kids. As we contemplated the fact that we were expecting 2 more precious bundles we became increasingly excited - and I became increasingly sick. I was told the babies were fraternal twin and we optimistically expected one boy and one girl (we really wanted Breya to have a little sister). Secretly, I wished for identical twin girls, but realized that this would not be the case.
We began to prepare our minds and our hearts for these sweet babies and felt undeservedly lucky. Still I felt cautious about my pregnancy and a little uncomfortable admitting it to others. Doctors reassured me that I was in for an exciting by likely uneventful pregnancy.
With a knee injury hampering my athletic pursuits, my focus turned to a busy year of moving and pregnancy to occupy my mind and my hands.
Having successfully endured a house sale and purchase, a 3 month period alone with my kids as Brendon started his new job in Kelowna, and a stressful move into our current rental home I felt the dust had finally settled. We felt we had managed a smooth transition into our new lives. I was ready to hunker down for the remainder of this pregnancy and enjoy a warm(??) Okanagan summer meeting new friends and trying new things.
We began to prepare our minds and our hearts for these sweet babies and felt undeservedly lucky. Still I felt cautious about my pregnancy and a little uncomfortable admitting it to others. Doctors reassured me that I was in for an exciting by likely uneventful pregnancy.
With a knee injury hampering my athletic pursuits, my focus turned to a busy year of moving and pregnancy to occupy my mind and my hands.
Having successfully endured a house sale and purchase, a 3 month period alone with my kids as Brendon started his new job in Kelowna, and a stressful move into our current rental home I felt the dust had finally settled. We felt we had managed a smooth transition into our new lives. I was ready to hunker down for the remainder of this pregnancy and enjoy a warm(??) Okanagan summer meeting new friends and trying new things.
Sayde's Story
I have created this blog to share our journey with the many friends and family who have been thinking of and praying for our little Sayde Baby. It has been overwhelming to me to see the outpouring of love and compassion from many of the wonderful people whom I have the privilege of calling my friends. Each of you have been a strength to us. I hope this blog can be an inspiration to many .... as Sayde has already become such an inspiration to us.
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