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.
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