Since the time I found out that we had lost one of the babies I had been preparing myself for day the girls would be born. The posts and blogs of many others who had experienced similar situations were particularly helpful. Although the loss was earlier than 20 weeks, the perinatologists at Women's Hospital indicated that baby A would be considered a stillborn as she would have to be birthed at the time baby B was born (in our case 33 weeks). Unfortunately the circumstances surrounding the delivery were less than ideal. Although in the back of my mind I wanted to ask to see the other baby, my thoughts were consumed with Sayde's condition. When the anestesiologist indicated that there was not much to see I didn't inquire further. It wasn't until the night before discharge that I began feeling sad that I had never had a chance to see my baby. That night Rebecca, the nurse that was present for the delivery sat down with Brendon and I and recounted the events of that evening. She told us that she had seen the baby and that it was very much intact. It was a very touching experience to listen as she described our precious angel baby to us. She felt saddened that the situation had not been delt with with more sensitivity towards our loss. She validated our feeling and expressed that although there would be others who would think that we should not grieve as those who had lost a singleton because we did have Sayde, that they were not right. This was our baby and we were right to grieve. She herself had twins and perhaps had a better understanding of our situation. My thought reflected back to the radiologist in Vernon who told me that my baby was dead, but at least I had one baby that seemed to be developing normally. The events that unfolded from that conversation with Rebecca were a great blessing to Brendon and I. We were given a special box for parents who have lost a baby and were put in contact with an amazing social worker who went out of her way to correct the hospital paperwork which documented that Sayde was a singleton - not a twin. She was able to arrange a special experience for us to properly say good bye to our precious angel in a way that we felt comfortable with and will cherish forever. It was a very personal experience that I will not share in detail, but in memory of our little Halle Renae Burgess, and for the benefit of any others who have experience such a loss, I have included this much of our experience. I will forever be grateful to this social worker who went out of her way to give us the memories that we will forever cherish and the hand and footprints that we will keep forever.
Little Footsteps
How very softly
you tiptoed into my world
Almost silently,
only for a moment you stayed.
But what an imprint
your footsteps have left
upon my heart.
- D. Ferguson
Tuesday, August 23, 2011
The NICU
Luckily Brendon was off work the Monday that Sayde was born, so he was able to take care of the other kids. I dreaded the recovery from a c-section. I am not usually one to sit back and "heal". I asked my OB if I would be able to run in the stake half marathon at the beginning of September and he was not impressed - actually I think he thought I was joking. The good news was that they would allow me to stay at the hospital a little longer than I would have otherwise so I could be close to Sayde. I think Breya's 2 week stay at RUH when she was sick with RSV at 2 weeks of age was to prepare me for our NICU stint with Sayde. We had lots of visitors the first few days and I was very grateful. I went down to US with Sayde for her cranial ultrasound and settled in to our every 3 hour feed times complete with weigh-ins. The results of the cranial ultrasound showed one small periventricular cyst which the pediatrician did not seem too concerned about. He suggested another cranial ultrasound to reassess the cyst in a few weeks and possibly a MRI at Children's down the road. Learning quickly from her mom, Sayde soon became very competitive with the other NICU babies showing them all up by keeping her sats high and her feeds up. After approximately 5 days she finally got rid of her IV. She had 2 bouts of phototherapy for mild jaundice and got to chill in the incubator with her fancy eyemax glasses. After approximately one week she was able to transition from the NICU side of the Special Care Nursery to the Nursery side. A few days later she was able to retire her monitor and a few weeks after that she was able to trial life out of the incubator. This was perhaps our biggest hiccup during our stay as she was still under 4 lbs and had a difficult time regulating her temperature. Perhaps if they turned the air conditioning off, or let her go to the beach she may have done better. She was back in the incubator for the rest of the afternoon and then we gave it another go in her cot. She struggled to keep up her feeds during this period, likely because of all of the energy she was expending to keep warm. We tried to suggest that she go back to the incubator, but the perinatologist seemed convinced that with a onsie, a sleeper, 2 blankets, a quilt, a hat and several warmed towels beside her she was fine. We began to joke that they would send her home in a snowsuit just to make more beds in the NICU. After 48hours of managing her own temperature the pediatrician felt comfortable letting her come home. At 35 1/2 weeks weighing 4lbs 6oz Sayde was able to come home yesterday - August 22. It was a bitter sweet homecoming as the funeral home also called for me to come an pick up the Halle's cremains. The girls came home together. We are so delighted to have little Sayde in our lives. The many prayers and miracles that have brought us to this point have been overwhelming. My hope is that each of you who have joined us on this journey will feel forever touched by our Sayde and that you can feel uplifted by the knowledge that you played a part in this miracle. The Lord works in amazing ways. Like I posted in the beginning - when we found out about Sayde I knew that our lives would never be the same. The increased faith and love in our home is amazing. Although we remain uncertain about the future I am encouraged by the words of President Monson at the last General Conference when he said, "Our future is as bright as our faith." I will continue to post on Sayde's progress as I know she yet has much to offer and many more to inspire.
Camping
We returned home to Kelowna on the last Friday of July. The kids and I went shopping and got things together for our next expedition - camping at Shushwap. It seemed like a good idea when we booked the campsite in April, but I was now beginning to question our decision. We completed our preparations Saturday morning and headed up north for our family vacation on Saturday afternoon. The kids were a little disappointed that they had to endure another 2 1/2 hours in the car, but they were excited to get to the campground. Fortunately, Ted and Rosemary and some of Brendon's other family had helped to set up our camp before we arrived. Apparently, our new tent wasn't very popular among the assemblers. My biggest concern coming into the vacation was the potential campfire smoke. This had not been a problem for the past several years due to fire bans across the province; however, after a mild beginning to the season this year, the parks would not invoke the same ban. From past experience, the Scotch Creek campsite gets extremely smoky when the campfire ban is not in effect. I had not anticipated this when we booked our site in April as we had been promised a hot dry summer. Sure enough, the smoke was intolerable. I was prepared to go home for the remainder of the vacation, however, I worried about Brendon taking care of the three kids by himself, and I didn't want to miss out on the kids vacation. Brendon and I discussed our options and checked with the park ranger. We finally decided that I would spend the nights in an overflow area that was removed from the main campground and where the air was clear. We got special permission from the park for me to park there overnight and sleep in the car. We all felt much better about this arrangement, although it was rather inconvenient and my sleeps were less than ideal. Still I enjoyed spending some alone time at night lying down and feeling the baby move. By the following Saturday I was pretty much done with camping. All of our clothes were dirty, we were out of food and I was now completely exhausted. Although we were booked until Tuesday morning we made the decision to go home early. One week was plenty of time for beaches, boating, and camping. I looked forward to getting home and getting some much needed rest in my own bed. We arrived back in Kelowna at midnight and spent a few hours unpacking. That night I had the best sleep I had had in several weeks. We went to church the next day and relaxed. We went for a family walk on the beach and noticed how warm the Kelowna waters felt. We were excited to spent the next 4-6 weeks getting the house organized, preparing for back to school and getting ready for the baby.
That night after getting the kids to bed I went and laid down on my bed. Usually this was the time that I felt Sayde most active. I laid there for 20 minutes waiting to feel her move. When I didn't feel anything I started to get concerned. I began to think back on the day to remember when I had last felt her move. The last time I could recall was at about 11am at church. I remember reading a post on a talk forum about a month earlier from a mom that was concerned about lack of fetal movement. I thought at the time that the mom was being overly cautious. The fellow posters had encouraged her to go in to get things checked out. Although everything was fine, she relayed her positive experience and how the hospital staff had been supportive of her decision to come in. I expressed my concern to Brendon and he initially brushed it off saying - "she is probably just sleeping ... you have an ultrasound booked in a week .... they can check it out then." I had already experienced the tragedy that can occur in a week. I responded by saying that she could be sleeping or she could be dead!!! (I tend to be blunt like that) Brendon agreed that for my own sanity maybe we should go in a get things checked. What we didn't want was to wait in emergency for 4 hours and come home 6 hours later even more exhausted. Brendon called into the hospital to check what would happen if we went in. He was told that we would be sent right to maternity for monitoring. We decided to go to get it checked out. Brendon's cousin Bobby came over to be with the kids and we headed for the hospital. Within a few minutes they had me hooked up to a monitor and we were relieved to hear the heartbeat. The nurse monitored the baby for over 20 minutes and during that time we were able to explain the history of the pregnancy. After 20 minutes the nurse expressed some concern that there was little variation in the heart rate. She suggested having me monitored overnight and then having me sent for an ultrasound and biophysical in the morning. Brendon went home to relieve Bobby and I tried to get comfortable for another night not in my own bed. I suddenly felt a really strong contraction. The nurse came rushing back in and showed immediate concern. The heart rate fell to 60 or 70 and took several minutes to work it's way back to normal. Apparently this is cause for significant concern. The nurse told Brendon several days later that this desat along with the lack of fetal movement indicated that the baby was not getting enough oxygen and that it was going into preservation mode by not moving. This combined with Sayde's history of hypoxia was a emergent concern. Rebecca, the nurse, called the doctor on call and the OB on call. The two doctors reviewed the monitoring sheets and quickly made the the decision to perform an emergency c-section. The OR was free so they began to do the blood work and prepare the IV for surgery. I called Brendon at 2:15 and he quickly came back to the hospital. I began to go into shock with all of the needles and tried to hold it together to sign away my life and make other important decision while the doctors quickly debriefed me on what was about to happen. I have never had surgery before and was completely terrified. I felt like I was taken to the top of a cliff and pushed off. I was extremely concerned about Sayde as things did not look good and I thought there was a good chance that we could loose her. If she did live - every doctor I had talked to so far had told me he chances at 33weeks would not be good. Yet, it seemed as though there was no other choice. As I was wheeled into the OR I felt like I needed to be at peace and trust the doctors. Brendon arrived around 2:30 and by 2:58am on Monday August 8th 2011 Sayde let out her first cry. This was the most beautiful sound I had heard as I knew that this first cry was so important for her. I wanted her to cry, to suck, and to be pink. Her apgar was 8/10 - I couldn't have been happier. She weighed 3lbs 12 oz which looked bigger than I thought it would. I told Brendon to stay with Sayde. I asked the Anaesthesiologist if he could see the other baby at all. He told me there was not much to see, so I left it at that. I sat in recover for several hours and was finally taken up to see our precious Sayde. She was so beautiful and perfect. She had been breathing on her own from the beginning, with only a little supplemental oxygen which they quickly discontinued. She had already overcome so many obstacles and exceeded every expectation. We were told to expect to be there at least until 37weeks. Her requirement for discharge were: 1) to maintain her oxygen sats and heart rate 2) to talk all of her feeds orally and 3) to maintain her temperature. She was placed in an incubator and hooked up to an IV for antibiotics and a monitor to assess her oxygen sats, pulse rate, and heart rate. We were initially told they she would spend the first few days taking her feeds by NG, since 33weekers are not typically successful at breastfeeding. Within a few hours Sayde breastfed for the first time. The nurses were amazed. They inserted an NG tube just in case, but after Sayde pulled it out for the 3rd time they didn't bother putting it back in. Neurologically she presented normally. Dr. Ranchod, the pediatrician ordered a cranial ultrasound for the next day.
That night after getting the kids to bed I went and laid down on my bed. Usually this was the time that I felt Sayde most active. I laid there for 20 minutes waiting to feel her move. When I didn't feel anything I started to get concerned. I began to think back on the day to remember when I had last felt her move. The last time I could recall was at about 11am at church. I remember reading a post on a talk forum about a month earlier from a mom that was concerned about lack of fetal movement. I thought at the time that the mom was being overly cautious. The fellow posters had encouraged her to go in to get things checked out. Although everything was fine, she relayed her positive experience and how the hospital staff had been supportive of her decision to come in. I expressed my concern to Brendon and he initially brushed it off saying - "she is probably just sleeping ... you have an ultrasound booked in a week .... they can check it out then." I had already experienced the tragedy that can occur in a week. I responded by saying that she could be sleeping or she could be dead!!! (I tend to be blunt like that) Brendon agreed that for my own sanity maybe we should go in a get things checked. What we didn't want was to wait in emergency for 4 hours and come home 6 hours later even more exhausted. Brendon called into the hospital to check what would happen if we went in. He was told that we would be sent right to maternity for monitoring. We decided to go to get it checked out. Brendon's cousin Bobby came over to be with the kids and we headed for the hospital. Within a few minutes they had me hooked up to a monitor and we were relieved to hear the heartbeat. The nurse monitored the baby for over 20 minutes and during that time we were able to explain the history of the pregnancy. After 20 minutes the nurse expressed some concern that there was little variation in the heart rate. She suggested having me monitored overnight and then having me sent for an ultrasound and biophysical in the morning. Brendon went home to relieve Bobby and I tried to get comfortable for another night not in my own bed. I suddenly felt a really strong contraction. The nurse came rushing back in and showed immediate concern. The heart rate fell to 60 or 70 and took several minutes to work it's way back to normal. Apparently this is cause for significant concern. The nurse told Brendon several days later that this desat along with the lack of fetal movement indicated that the baby was not getting enough oxygen and that it was going into preservation mode by not moving. This combined with Sayde's history of hypoxia was a emergent concern. Rebecca, the nurse, called the doctor on call and the OB on call. The two doctors reviewed the monitoring sheets and quickly made the the decision to perform an emergency c-section. The OR was free so they began to do the blood work and prepare the IV for surgery. I called Brendon at 2:15 and he quickly came back to the hospital. I began to go into shock with all of the needles and tried to hold it together to sign away my life and make other important decision while the doctors quickly debriefed me on what was about to happen. I have never had surgery before and was completely terrified. I felt like I was taken to the top of a cliff and pushed off. I was extremely concerned about Sayde as things did not look good and I thought there was a good chance that we could loose her. If she did live - every doctor I had talked to so far had told me he chances at 33weeks would not be good. Yet, it seemed as though there was no other choice. As I was wheeled into the OR I felt like I needed to be at peace and trust the doctors. Brendon arrived around 2:30 and by 2:58am on Monday August 8th 2011 Sayde let out her first cry. This was the most beautiful sound I had heard as I knew that this first cry was so important for her. I wanted her to cry, to suck, and to be pink. Her apgar was 8/10 - I couldn't have been happier. She weighed 3lbs 12 oz which looked bigger than I thought it would. I told Brendon to stay with Sayde. I asked the Anaesthesiologist if he could see the other baby at all. He told me there was not much to see, so I left it at that. I sat in recover for several hours and was finally taken up to see our precious Sayde. She was so beautiful and perfect. She had been breathing on her own from the beginning, with only a little supplemental oxygen which they quickly discontinued. She had already overcome so many obstacles and exceeded every expectation. We were told to expect to be there at least until 37weeks. Her requirement for discharge were: 1) to maintain her oxygen sats and heart rate 2) to talk all of her feeds orally and 3) to maintain her temperature. She was placed in an incubator and hooked up to an IV for antibiotics and a monitor to assess her oxygen sats, pulse rate, and heart rate. We were initially told they she would spend the first few days taking her feeds by NG, since 33weekers are not typically successful at breastfeeding. Within a few hours Sayde breastfed for the first time. The nurses were amazed. They inserted an NG tube just in case, but after Sayde pulled it out for the 3rd time they didn't bother putting it back in. Neurologically she presented normally. Dr. Ranchod, the pediatrician ordered a cranial ultrasound for the next day.
Saturday, August 13, 2011
A busy summer
Our summer has been a whirlwind of activities so far. I have neglected my blog mainly because I haven't had more than a few moments to sit down since the kids got out of school in June. Our first project in July was to move from our rental house to the house that we actually purchased. Of course that involved all of the bluster of activity that surrounds any move: mortgage papers being signed, financing being finalized, cleaning, moving, setting things up, and of course dealing with getting - or not getting our damage deposit back from a completely impossible landlord. Needless to say it was an very exhausting and emotionally draining week. On top of it all I had my regular ultrasounds and doctors appointments in Kelowna. The two ultrasounds that I had in Kelowna went as well as could be expected. Since the radiologist in Vancouver had indicated that most of the subtle changes that she had been monitoring may not be picked up by the average radiologist, I wasn't expecting much from the ultrasounds other than to monitor her growth and head size. Both time the radiologists indicated that aside from a smaller than normal head size, everything looked fine. I now take everything that anyone tells me with a grain of salt. We continued on hoping and praying that everything would work out for Sayde. Carrying this huge worry this pregnancy has not been easy. There have been many times that I have felt completely overwhelmed with the prospect of dealing with whatever the future might hold. Yet none of us knows what our future might hold. None of us knows what challenges these precious children that we bring into the world may experience. None of us can adequately prepare ourselves for the unexpected challenges that life throws at us.
Mom and my nephew Ross came to help with the move for several days - along with the Ted and Rosemary. Everyone worked extremely hard moving, cleaning, painting and doing other odd jobs. We were so grateful for all the help. By the end of the week most of the important stuff was in place, but we still had a garage full of boxes. I had been planning on taking the kids down to the coast for a few weeks for a vacation, but we decided to pause for a few minutes and settle into our new home. Keaton, in particular, seemed a little confused by it all. He kept making comments about his new house and his rental house, and didn't seem quite sure where he belonged.
A week later we did make our trip to Vancouver to visit with family. Over all, it was a fun and enjoyable trip - aside from the fact that some passer by took a key or a rock to the side door of our car and made quite a mess. The kids had a great time with their cousins. Still it was exhausting, adding to my already exhausted state. The main reason for our trip, however, was to attend our 30 week ultrasound at Women's Hospital. I felt confident going into this appointment, as I had been reassured over and over that things would work out well for Sayde; however, I still felt guarded given our history of receiving bad news. Brendon came down to Vancouver for a few days and met me at the hospital. We went in for the ultrasound. First a resident went through the scan and took the measurements and then the ultrasound tech repeated the procedure attaining similar measurements. Dr. Pugash came in briefly and explained that she was having a hard time juggling her time and was trying to finish up with a meeting she was involved in, but wanted to spend the appropriate time explaining thing to us and being thorough with the exam. She asked if we could wait for twenty minutes so that she could then sit down with us and give us her full attention. After twenty minutes we returned to the ultrasound examination room and Dr. Pugash spent a good deal of time scanning Sayde's brain. When she was finished she explained that things looked quite good. She told us that the migration of the brain tissue (which occurs as the brain grows and develops) looked appropriate, the gyration and sulcation (folding of the brain tissue) looked normal, and that she could not see any cysts or calcification in the periventricular area!!! She also indicated that the ventricles seemed symmetrical and appropriately sized. This was all a little confusing and Brendon questioned, "So what about the cysts that were seen in the previous ultrasounds?" Dr. Pugash sat back and took a deep breath and then relayed something significant. She explained that she had spent a significant amount of time reviewing the previous films and felt concerned that perhaps she had over-diagnosed and had perhaps felt she had seen more that was actually there. She expressed deep remorse for concern she had invoked. She did indicate that with maturity the skull had begun to ossify making it more difficult to see the interior brain structures, but she had tried to be a thorough as possible to give us a adequate picture of Sayde's condition. She expressed cautious optimism for a better outcome than anticipated. From what she could see of the brain structures things looked much better than originally thought. Still there was this overwhelming concern for the small size of Sayde's head and brain (she had now fallen to the 3rd percentile). Brendon question the effect this might have on a possible prognosis. She mentioned possible developmental delay, motor delay, or a normal/appropriate outcome. Brendon and I felt a great deal of relief, however, with the ups and downs of this journey we remained cautious. We felt overwhelming gratitude for what we felt was the beginning of a miracle. Something more significant than a radiographic error had occurred and we felt so blessed for all of the faith, prayers, and thoughts that had gone out on our behalf. At the same time we felt the continued need for these prayers. This had indeed been a glimpse into the medical miracle that I had been assured of even before I found out the agonizing news from the first ultrasound.
Mom and my nephew Ross came to help with the move for several days - along with the Ted and Rosemary. Everyone worked extremely hard moving, cleaning, painting and doing other odd jobs. We were so grateful for all the help. By the end of the week most of the important stuff was in place, but we still had a garage full of boxes. I had been planning on taking the kids down to the coast for a few weeks for a vacation, but we decided to pause for a few minutes and settle into our new home. Keaton, in particular, seemed a little confused by it all. He kept making comments about his new house and his rental house, and didn't seem quite sure where he belonged.
A week later we did make our trip to Vancouver to visit with family. Over all, it was a fun and enjoyable trip - aside from the fact that some passer by took a key or a rock to the side door of our car and made quite a mess. The kids had a great time with their cousins. Still it was exhausting, adding to my already exhausted state. The main reason for our trip, however, was to attend our 30 week ultrasound at Women's Hospital. I felt confident going into this appointment, as I had been reassured over and over that things would work out well for Sayde; however, I still felt guarded given our history of receiving bad news. Brendon came down to Vancouver for a few days and met me at the hospital. We went in for the ultrasound. First a resident went through the scan and took the measurements and then the ultrasound tech repeated the procedure attaining similar measurements. Dr. Pugash came in briefly and explained that she was having a hard time juggling her time and was trying to finish up with a meeting she was involved in, but wanted to spend the appropriate time explaining thing to us and being thorough with the exam. She asked if we could wait for twenty minutes so that she could then sit down with us and give us her full attention. After twenty minutes we returned to the ultrasound examination room and Dr. Pugash spent a good deal of time scanning Sayde's brain. When she was finished she explained that things looked quite good. She told us that the migration of the brain tissue (which occurs as the brain grows and develops) looked appropriate, the gyration and sulcation (folding of the brain tissue) looked normal, and that she could not see any cysts or calcification in the periventricular area!!! She also indicated that the ventricles seemed symmetrical and appropriately sized. This was all a little confusing and Brendon questioned, "So what about the cysts that were seen in the previous ultrasounds?" Dr. Pugash sat back and took a deep breath and then relayed something significant. She explained that she had spent a significant amount of time reviewing the previous films and felt concerned that perhaps she had over-diagnosed and had perhaps felt she had seen more that was actually there. She expressed deep remorse for concern she had invoked. She did indicate that with maturity the skull had begun to ossify making it more difficult to see the interior brain structures, but she had tried to be a thorough as possible to give us a adequate picture of Sayde's condition. She expressed cautious optimism for a better outcome than anticipated. From what she could see of the brain structures things looked much better than originally thought. Still there was this overwhelming concern for the small size of Sayde's head and brain (she had now fallen to the 3rd percentile). Brendon question the effect this might have on a possible prognosis. She mentioned possible developmental delay, motor delay, or a normal/appropriate outcome. Brendon and I felt a great deal of relief, however, with the ups and downs of this journey we remained cautious. We felt overwhelming gratitude for what we felt was the beginning of a miracle. Something more significant than a radiographic error had occurred and we felt so blessed for all of the faith, prayers, and thoughts that had gone out on our behalf. At the same time we felt the continued need for these prayers. This had indeed been a glimpse into the medical miracle that I had been assured of even before I found out the agonizing news from the first ultrasound.
Thursday, June 30, 2011
My Kids
This whole experience with Sayde has given me a new appreciation for each of my children. First of all, I feel like I can understand and appreciate their uniqueness better than ever before. I guess when I decided to have kids, I thought they would be just like me. When Bryson showed no interest in being the best on the team, or found no satisfaction in finishing as many workbooks as possible, or could care less if he made his sister cry I was shocked. They were all suppose to be dedicated overachievers who wanted nothing more than to please their parents. How were my parents so lucky!!! And why did all the clones of me go to my brother??? Each child is different. When we choose to have children, we really never know what we are going to get. What we will get, undoubtedly, is a education in love, patience, understanding, and personal growth. My children have taught me so much. They are each amazing and, thankfully, not clones of me. My favorite time is when I go into their rooms when they are sleeping and kiss them goodnight and stare at their beautiful faces.
It amazes me how my children have seemed to adjust seamlessly to our move, our unsettled living arrangements, and all of these complicated issues, which I discuss on a daily basis with all of them. Not only are they managing or adjusting, but in many circumstances they seem to be thriving. Bryson hasn't batted an eye at the transition into his new school. His social behaviour and reading skills have actually begun to improve. Breya, as always, continues to make friends where ever she goes (except with Bryson). She told me the other day that she always makes a friend everywhere she goes. "I may not know their name and we may not actually say that we are friends, but I just know they are my friend and we play together." Keaton hasn't had any setbacks in his amazing potty training, which I did in the throws of our move. I feel very grateful and blessed for these little miracles.
All of my children have a special love for Sayde. Keaton repeats his catch phrase for Sayde again an again - "Hold me, hug me, don't let me go." Bryson loves to hug Sayde aka my belly. Keaton often tried to look into my distorted belly button to see Sayde and asks for her to come out. Breya is just happy that there will now be 3 girls and 3 boys in the family (including Brendon and I) and that she won't have to share a room with Keaton anymore.
Breya makes sure that Sayde is blessed in every prayer or blessing on the food. Keaton has begun to pray that everyone's brains will grow. Bryson has begun to pray for other small miracles that he feels are needed - like that dad will find the library DVD we lost.
Children can teach us so much. I am so grateful for each of mine. They are not perfect, but they are mine.
It amazes me how my children have seemed to adjust seamlessly to our move, our unsettled living arrangements, and all of these complicated issues, which I discuss on a daily basis with all of them. Not only are they managing or adjusting, but in many circumstances they seem to be thriving. Bryson hasn't batted an eye at the transition into his new school. His social behaviour and reading skills have actually begun to improve. Breya, as always, continues to make friends where ever she goes (except with Bryson). She told me the other day that she always makes a friend everywhere she goes. "I may not know their name and we may not actually say that we are friends, but I just know they are my friend and we play together." Keaton hasn't had any setbacks in his amazing potty training, which I did in the throws of our move. I feel very grateful and blessed for these little miracles.
All of my children have a special love for Sayde. Keaton repeats his catch phrase for Sayde again an again - "Hold me, hug me, don't let me go." Bryson loves to hug Sayde aka my belly. Keaton often tried to look into my distorted belly button to see Sayde and asks for her to come out. Breya is just happy that there will now be 3 girls and 3 boys in the family (including Brendon and I) and that she won't have to share a room with Keaton anymore.
Breya makes sure that Sayde is blessed in every prayer or blessing on the food. Keaton has begun to pray that everyone's brains will grow. Bryson has begun to pray for other small miracles that he feels are needed - like that dad will find the library DVD we lost.
Children can teach us so much. I am so grateful for each of mine. They are not perfect, but they are mine.
June 30 Ultrasound
We had an appointment with my obstetrician, Dr. Benoit, here in Kelowna a few weeks ago. I have learned, at this point to take everything the doctors say with a grain of salt, as we have been told so many conflicting things throughout this pregnancy. Although the perinatologists at Women's Hospital did not voice any concerns about having me deliver in Kelowna, and did not suggest any reason that this baby would come prematurely, Dr. Benoit seemed to think otherwise. He told us that he has never seen a TTTS complication this early in pregnancy and seemed to indicate that he thought it naive to think that the rest of this pregnancy would go without complication. He also voiced his concerns about delivering this baby in Kelowna. Since he is thought to be the best OB in Kelowna, I guess we will be coming to Vancouver to deliver Sayde. I, myself, remain confident that Sayde will be able to go until close to full term. With my luck, she will probably be two weeks late. Dr. Benoit's main concern is that the baby will reach a point where she will no longer be growing sufficiently and will need to be taken early. A preterm baby who already has known complications was more than he felt comfortable with, given the resources here.
I am suppose to be followed for ultrasounds every two weeks to monitor Sayde's growth and development. This morning I went for my first ultrasound in a month (every 2 weeks from here on in). This time I only had to drive a few blocks. A wonderful friend joined me as Brendon had to work. I now dread ultrasounds and don't wish to be alone to experience any more hurt and pain.
As I suspected the tech had no background on my pregnancy prior to the scan. I asked her right away what she knew, because I wanted to avoid an awkward and uncomfortable situation. From what she knew, it was still a viable twin pregnancy. I quickly corrected her and gave her the coles notes of my complicated situation. It sure made a difference in the mood in the room. For the first time she talked openly throughout the scan about what she saw and asked me questions as well. Sayde was relatively quite throughout the scan, but her heart rate was at it's normal 155bpm. The tech was concerned about her lack of movement, until she finally started her regular boxing match with my bladder. She has now moved into a transverse position with her bum on the left and her head on the right - sprawling across my upper abdomen. This leaves her arms and legs in the perfect position to pound on my bladder and pelvis. It took awhile to get her into a good position to get all of the necessary measurements, but she finally cooperated. We were only able to get a frontal view of her face this time, which I always find a little creepy.
I asked to have the radiologist come in and give me any insights he had immediately after the scan. As I anticipated, he said that were it not for my report and the fact that there was one non-viable fetus, he would have viewed this as a normal single pregnancy. This was what the radiologist at Women's hospital had told us may happen. He said that the isolated head circumference measurement did appear to be on the small side compared to the rest of the baby's growth, however, without Sayde's history, he would not have otherwise flagged this as a concern. He did indicate that the head circumference measurement were under the 10th percentile. This was my biggest concern as, given the previous measurements, it may indicated a continued lag in the growth and development of the brain. For now we can feel happy that the fluid levels, body growth and other organ development appear normal. As Dr. Pugash from Women's Hospital indicated, most other radiologist would not be able to picked up on the very subtle changes that she identified. It makes me wonder how things may have been different if we hadn't been sent to Women's. After all, the radiologist in Vernon tried to comfort me by telling me that I still seemed to have on normally developing baby. Hopefully, the signs remain subtle and the subsequent effects on Sayde remain minimal. My continued hope and prayer is that this little girl's brain keeps on growing.
I am suppose to be followed for ultrasounds every two weeks to monitor Sayde's growth and development. This morning I went for my first ultrasound in a month (every 2 weeks from here on in). This time I only had to drive a few blocks. A wonderful friend joined me as Brendon had to work. I now dread ultrasounds and don't wish to be alone to experience any more hurt and pain.
As I suspected the tech had no background on my pregnancy prior to the scan. I asked her right away what she knew, because I wanted to avoid an awkward and uncomfortable situation. From what she knew, it was still a viable twin pregnancy. I quickly corrected her and gave her the coles notes of my complicated situation. It sure made a difference in the mood in the room. For the first time she talked openly throughout the scan about what she saw and asked me questions as well. Sayde was relatively quite throughout the scan, but her heart rate was at it's normal 155bpm. The tech was concerned about her lack of movement, until she finally started her regular boxing match with my bladder. She has now moved into a transverse position with her bum on the left and her head on the right - sprawling across my upper abdomen. This leaves her arms and legs in the perfect position to pound on my bladder and pelvis. It took awhile to get her into a good position to get all of the necessary measurements, but she finally cooperated. We were only able to get a frontal view of her face this time, which I always find a little creepy.
I asked to have the radiologist come in and give me any insights he had immediately after the scan. As I anticipated, he said that were it not for my report and the fact that there was one non-viable fetus, he would have viewed this as a normal single pregnancy. This was what the radiologist at Women's hospital had told us may happen. He said that the isolated head circumference measurement did appear to be on the small side compared to the rest of the baby's growth, however, without Sayde's history, he would not have otherwise flagged this as a concern. He did indicate that the head circumference measurement were under the 10th percentile. This was my biggest concern as, given the previous measurements, it may indicated a continued lag in the growth and development of the brain. For now we can feel happy that the fluid levels, body growth and other organ development appear normal. As Dr. Pugash from Women's Hospital indicated, most other radiologist would not be able to picked up on the very subtle changes that she identified. It makes me wonder how things may have been different if we hadn't been sent to Women's. After all, the radiologist in Vernon tried to comfort me by telling me that I still seemed to have on normally developing baby. Hopefully, the signs remain subtle and the subsequent effects on Sayde remain minimal. My continued hope and prayer is that this little girl's brain keeps on growing.
June Fast
I have been neglectful in my posts over the past month. We have not had much in the way of updates, and every time I consider posting personal thoughts or feelings I wonder if it is appropriate or respectful to Sayde or my family to do so. That and I have felt so many emotional ups and downs over the past month that I have been trying to figure out how I am suppose to cope with the various emotions that sometimes smother me. I have realized that none of us know how to respond to events like this in life. When the radiologist in Vernon first told me that baby A was no longer viable I sat there wondering how I was suppose to react - was I suppose to break down? was I suppose to hold it together? was I suppose to need 1/2 an hour to sit and let it soak in? was I suppose to want them to call my family? was I suppose to run and hide? What is someone suppose to do when they find out that the baby they have been bonding to for the past 4 1/2 months is gone? I have wondered when watching television shows or movies where people are faced with tragedy, how I would react in such a situation. I guess in the end I just carried on: I walked out the door; I drove to the doctors office; I waited my turn; I drove home; and then I cried and cried until the tear no longer came. There is not book of instructions; no suggested etiquette for these sorts of things. We fumble through them the best we can. That is the state in which I have found myself over and over for the past two months - fumbling. People have mention how strong we seem - I have appreciated the thoughts and comments. Do I feel strong? Perhaps all of your thoughts, words, prayers, and fasting have made me stronger.
In response to my self-questioning as to whether I should be writing our personal thoughts and feelings, I have come to the conclusion that this has happened for a reason. Many have commented on how our story has touched them. If relaying Sayde's story to others is able to offer hope and inspiration to others, then maybe all of our struggling and sorrows are worth it. This little child is an inspiration to us, and if her story, her miracles, her accomplishments are and inspiration to others as well, then I will continue to write. I owe her that. Sometimes I feel like this little girl could not wait to get here to make a difference in this world.
As far as an update, I first wanted to thank everyone for their thoughts, prayers and fasting. We have had friends from all over the world offering thoughts and prayers on Sayde's behalf and I am so grateful for every single one. At the beginning of May, several friends and family joined us in a special fast for Sayde. Fasting is a voluntary abstinence of food and water for a period of time, which we feel, when coupled with prayer can bring greater peace, clarity and understanding. It is a small show of humility and sacrifice. The first Sunday of the month is typically a time that we set aside to fast for whatever or whomever we feel inclined. In my experience there is great strength gleaned from the combined prayers and fasting of many people for a solitary purpose. As I am pregnant, it would be unwise for me to go without food for 2 meals. For this reason I felt dependent on others for this. Brendon and I sat down later that evening and tried to list the families that had actually indicated to us that they would like to take part in this. We calculated between 150 and 300 people. Even my 5 year old suggested that she and her brothers skip one of their snacks to help Sayde. We were deeply touched that so many people would be so willing to make this sacrifice for us. I have been meaning to thank everyone for their thoughts, prayers and fasting. Every bit of spiritual strength and positive energy is appreciated.
I have thought that if there is meant to be a miracle - surely the love and prayers that have been sent out on Sayde's behalf will bring with them miracles. I know in many ways and forms they already have.
I will continue to pray everyday for Sayde. I have promised her that I will no let her down. Our families plan to continue to fast the first Sunday of the month as well, until she is born. I have felt awkward asking others to join in, but then I think of the many Sunday's of fasting that I would have loved to have the opportunity to feel my efforts were of service to someone else.
In response to my self-questioning as to whether I should be writing our personal thoughts and feelings, I have come to the conclusion that this has happened for a reason. Many have commented on how our story has touched them. If relaying Sayde's story to others is able to offer hope and inspiration to others, then maybe all of our struggling and sorrows are worth it. This little child is an inspiration to us, and if her story, her miracles, her accomplishments are and inspiration to others as well, then I will continue to write. I owe her that. Sometimes I feel like this little girl could not wait to get here to make a difference in this world.
As far as an update, I first wanted to thank everyone for their thoughts, prayers and fasting. We have had friends from all over the world offering thoughts and prayers on Sayde's behalf and I am so grateful for every single one. At the beginning of May, several friends and family joined us in a special fast for Sayde. Fasting is a voluntary abstinence of food and water for a period of time, which we feel, when coupled with prayer can bring greater peace, clarity and understanding. It is a small show of humility and sacrifice. The first Sunday of the month is typically a time that we set aside to fast for whatever or whomever we feel inclined. In my experience there is great strength gleaned from the combined prayers and fasting of many people for a solitary purpose. As I am pregnant, it would be unwise for me to go without food for 2 meals. For this reason I felt dependent on others for this. Brendon and I sat down later that evening and tried to list the families that had actually indicated to us that they would like to take part in this. We calculated between 150 and 300 people. Even my 5 year old suggested that she and her brothers skip one of their snacks to help Sayde. We were deeply touched that so many people would be so willing to make this sacrifice for us. I have been meaning to thank everyone for their thoughts, prayers and fasting. Every bit of spiritual strength and positive energy is appreciated.
I have thought that if there is meant to be a miracle - surely the love and prayers that have been sent out on Sayde's behalf will bring with them miracles. I know in many ways and forms they already have.
I will continue to pray everyday for Sayde. I have promised her that I will no let her down. Our families plan to continue to fast the first Sunday of the month as well, until she is born. I have felt awkward asking others to join in, but then I think of the many Sunday's of fasting that I would have loved to have the opportunity to feel my efforts were of service to someone else.
Saturday, May 28, 2011
May 25, Women's Hospital follow-up
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.
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.
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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