Monday, May 3
Tuesday, February 23
Lily Emke's funeral and burial will be Thursday, February 25th
Dear family and friends,
The funeral for Lily Emke Visser will be Thursday, February 25, 2010 at 10:00 a.m. at our parish, St. John the Baptist Ukrainian Catholic Church, 952 Green Valley Crescent. The church will be open from 9:00 a.m. for visitation. The funeral will be followed by refreshments in the church basement. Lily will then be brought to Capital Memorial Gardens, 3700 Prince of Wales Drive (just past Woodroffe Avenue on the right) for burial. Upon entering the cemetery, keep to your left.
Wednesday evening, Lily will be brought to the church at 7:00 p.m. for a Panakhyda (short memorial service) followed by a time of vigil where the Psalter will be prayed over her body. The casket will be open and remain open until the end of the funeral service the next day.
May Lily's memory be eternal!
P.S. If you sent us an email after Sunday at 7:00 p.m. or before Monday at 8:00 a.m., we unfortunately did not receive it due to a technical issue.
The funeral for Lily Emke Visser will be Thursday, February 25, 2010 at 10:00 a.m. at our parish, St. John the Baptist Ukrainian Catholic Church, 952 Green Valley Crescent. The church will be open from 9:00 a.m. for visitation. The funeral will be followed by refreshments in the church basement. Lily will then be brought to Capital Memorial Gardens, 3700 Prince of Wales Drive (just past Woodroffe Avenue on the right) for burial. Upon entering the cemetery, keep to your left.
Wednesday evening, Lily will be brought to the church at 7:00 p.m. for a Panakhyda (short memorial service) followed by a time of vigil where the Psalter will be prayed over her body. The casket will be open and remain open until the end of the funeral service the next day.
May Lily's memory be eternal!
P.S. If you sent us an email after Sunday at 7:00 p.m. or before Monday at 8:00 a.m., we unfortunately did not receive it due to a technical issue.
Sunday, February 21
Our baby Lily is at peace
Dear family and friends,
After sending our email yesterday, we went to Vespers as we normally do on Saturdays, which this Saturday was followed by a meal at the church. We arrived home close to 9:00 p.m., watched some of the Olympics, and the kids were ready for bed when Rebecca's water broke at 9:50 p.m. We had been concerned that her size might cause her to bleed when her water broke, but everything was normal.
When we arrived at the hospital, she was dilated 2 cm with regular contractions. We had the baby heart monitor attached so we could hear Lily's heartbeat. Her heart rate was low and slowly decreasing. Close to midnight, we were moved to a different room away from the other deliveries so that we wouldn't hear babies crying, and when the heart monitor was attached again, it could only pick up Rebecca's heartbeat. A portable ultrasound was brought in which confirmed that Lily's heart was not beating. We don't know the exact time of death, but we think it was just after midnight, Sunday, February 21st. The doctor and nurse left us so that we could grieve together, and we called our parents and some close friends.
My wonderful Rebecca now had to finish labour in the knowledge that the joy of holding Lily alive was gone. Her labour progressed much like her past ones have, and at 1:57 a.m., Lily Emke was born. We were not blessed to hear her cry but we cried for her and with her. She weighs 4 lbs., 2 ou. (1880 grams) and is 50 cm (almost 20 in.) long. She is beautiful. I was able to bath her and blessed all the parts of her body with the holy water we had hoped to baptize her with. A photographer came, and a nurse followed to take foot and hand molds that will be set in plaster. At 7:30, after a couple hours of sleep, I left for home so that I could tell the kids, and Rebecca has hopefully been able to have her first real sleep. She is physically doing well. When I arrived home, only Nico was awake, with Emmie. The other kids awoke at around 8:30, and I was able to tell them at around the same time the sad news and prepare them for their visit with Lily.
After Lily was born, we called our parents. My dad was about to leave for the airport for an overnight flight to Ottawa and is due to arrive at 9:20 a.m. Rebecca's parents are flying in at 2:00 p.m. Emmie, the kids, and I will pick up my dad from the airport and then go to the hospital to see Rebecca and Lily. As I write this email, our son Auke is playing Brahm's Lullaby on the piano. It is a piece he played once before right after one of our difficult conversations about Lily. May God help our children find their way to grieve.
We can often struggle to understand why things happen when they do. In one sense, we had hoped that Lily would be born March 1st: there were many reasons it made practical sense for us and it would have given us more time with her. We have a real peace, however, that this was truly Lily's time. It was important for us, especially Harold, to send the email we did yesterday; our friend completed the burial gown for Lily yesterday and gave it to us at Vespers; after Vespers, we picked up our mail, and a blanket that Rebecca's mom had made had arrived; yesterday, we picked up the last materials we need for the boys to make their lily mosaic and visited a cemetery where we may bury Lily; yesterday at Vespers, we were given the last text we needed for Lily's funeral service: God knew what we needed to have arranged before Lily arrived.
It our time of grief, we are also thinking of Stefan and his family. Soon after Lily was born, both of us, at the same time, had an image of Stefan holding Lily in heaven. May God bless them both in His presence.
After sending our email yesterday, we went to Vespers as we normally do on Saturdays, which this Saturday was followed by a meal at the church. We arrived home close to 9:00 p.m., watched some of the Olympics, and the kids were ready for bed when Rebecca's water broke at 9:50 p.m. We had been concerned that her size might cause her to bleed when her water broke, but everything was normal.
When we arrived at the hospital, she was dilated 2 cm with regular contractions. We had the baby heart monitor attached so we could hear Lily's heartbeat. Her heart rate was low and slowly decreasing. Close to midnight, we were moved to a different room away from the other deliveries so that we wouldn't hear babies crying, and when the heart monitor was attached again, it could only pick up Rebecca's heartbeat. A portable ultrasound was brought in which confirmed that Lily's heart was not beating. We don't know the exact time of death, but we think it was just after midnight, Sunday, February 21st. The doctor and nurse left us so that we could grieve together, and we called our parents and some close friends.
My wonderful Rebecca now had to finish labour in the knowledge that the joy of holding Lily alive was gone. Her labour progressed much like her past ones have, and at 1:57 a.m., Lily Emke was born. We were not blessed to hear her cry but we cried for her and with her. She weighs 4 lbs., 2 ou. (1880 grams) and is 50 cm (almost 20 in.) long. She is beautiful. I was able to bath her and blessed all the parts of her body with the holy water we had hoped to baptize her with. A photographer came, and a nurse followed to take foot and hand molds that will be set in plaster. At 7:30, after a couple hours of sleep, I left for home so that I could tell the kids, and Rebecca has hopefully been able to have her first real sleep. She is physically doing well. When I arrived home, only Nico was awake, with Emmie. The other kids awoke at around 8:30, and I was able to tell them at around the same time the sad news and prepare them for their visit with Lily.
After Lily was born, we called our parents. My dad was about to leave for the airport for an overnight flight to Ottawa and is due to arrive at 9:20 a.m. Rebecca's parents are flying in at 2:00 p.m. Emmie, the kids, and I will pick up my dad from the airport and then go to the hospital to see Rebecca and Lily. As I write this email, our son Auke is playing Brahm's Lullaby on the piano. It is a piece he played once before right after one of our difficult conversations about Lily. May God help our children find their way to grieve.
We can often struggle to understand why things happen when they do. In one sense, we had hoped that Lily would be born March 1st: there were many reasons it made practical sense for us and it would have given us more time with her. We have a real peace, however, that this was truly Lily's time. It was important for us, especially Harold, to send the email we did yesterday; our friend completed the burial gown for Lily yesterday and gave it to us at Vespers; after Vespers, we picked up our mail, and a blanket that Rebecca's mom had made had arrived; yesterday, we picked up the last materials we need for the boys to make their lily mosaic and visited a cemetery where we may bury Lily; yesterday at Vespers, we were given the last text we needed for Lily's funeral service: God knew what we needed to have arranged before Lily arrived.
It our time of grief, we are also thinking of Stefan and his family. Soon after Lily was born, both of us, at the same time, had an image of Stefan holding Lily in heaven. May God bless them both in His presence.
Saturday, February 20
February 20, 2010
Dear family and friends,
We have been wanting for a few weeks to write an update on our little girl, but the busyness of life coupled with our own need to come to terms with what we may be facing have together delayed this email. To family and friends whom we have not been in contact with, we regret that it has taken us two months to provide additional news. To everyone who has supported us in prayer or in practical ways: thank you so much. Your support has helped us see God's blessing throughout the last three months.
About a month ago, we finally decided on a name for our baby girl: Lily Emke. Rebecca had liked the name Lily in the weeks leading up to our decision, and when we connected it to Christ's description of the lilies of the fields, it seemed perfect: "Consider how the lilies grow: they neither labour nor spin, yet I tell you, not even Solomon in all his splendour was arrayed like one of these." (Luke 12:27) Lily is at perfect peace in Rebecca's womb, growing as God has planned, more beautiful than anything humanity could ever create. Emke is the official name of Harold's youngest sister, Emmie. Like Lily, she is the seventh child and third girl in her family.
We purposely avoided any appointments over the Christmas break so that we could focus on our time together as a family. The evening of our last email in December, Harold flew by himself to Vancouver to celebrate his parents 40th wedding anniversary with his family, coming back on Monday the 21st in time for Joachim's birthday dinner. It was wonderful for Harold to share some time with his family, both for the celebration with the family, which Rebecca and Emmie (from Holland) took part in through Skype, and also to share some of his sadness. He was also blessed to meet his newest nephew, Johannes and Susan's seventh child, Timothy.
The first and most significant doctor's appointments since our last email were on January 7th, three weeks after that email. We have been blessed to have the same obstetrician for all our appointments, always on a Thursday, and on January 7th, we met her first, where the primary concern was the size of Rebecca's womb. Lily is almost certainly not swallowing amniotic fluid, but Rebecca's body continues to produce it nonetheless. In the three weeks since the last appointment with the obstetrician, Rebecca grew larger than she had ever been in any other pregnancy, even though she was only seven months, and besides the discomfort, she also had growing back pain which had made it almost impossible for her to function. After our appointment with the obstetrician, we had an appointment scheduled with the neonatologist, so it was decided to follow that with an amnio reduction. Similar to amniocentesis, a needle - in this case, larger - is pushed into the womb, but instead of taking a small amount of amniotic fluid for testing, large amounts of fluid are withdrawn into bottles. The hope had been to take out two litres, but the procedure was so painful for Rebecca that they had to stop after 1.2 litres. The main issue was that the needle was causing her uterus to spasm. Rebecca also began having contractions, so they decided to keep her at the hospital for observation for a couple hours until her body settled down. The procedure was very unpleasant, but it did give Rebecca immediate relief from her back pain. We had anticipated that we would need to have the amnio reduction done again at the beginning of February, but even though Rebecca is now larger than she was before the procedure, the back pain has thankfully not returned.
Before the amnio reduction, we had a very important appointment with the neonatologist to discuss options after Lily was born. She was very clinical and unfortunately found it unnecessary to discuss with us any real options other than comfort measures. She was a young doctor who was specializing in neonatology, and she did not give us the sense that she viewed Lily as a real human being. Harold in particular wanted to explore every possible option to help her live, and since she couldn't answer a few of our questions, she brought in the staff doctor who thankfully spoke in language that affirmed that Lily was truly a human being. She was able to explain that with Trisomy-18 and CDH (congenital diaphragmatic hernia), intervention for one condition was limited by and negatively impacted the other condition. For the first time, we clearly appreciated how it was the combination of both issues that severely hampered Lily's chance at life out of the womb. Even the most basic procedure of intubation - inserting a tube down the throat to give air, and the main option under consideration - would cause Lily pain, it would take time, and it would also require a partial paralysis to control her muscles. With intubation, Lily would likely still only live for a short time, and it became quickly clear to us that it would be better to spend whatever time we have with Lily without her attached to machines and able to respond to our touch. It was a very sobering realization that there was really nothing we could do, especially for Harold, who, as a father, finds it difficult to accept that he is powerless to do anything practical to help his child. If Lily survives birth, the only intervention we expect is for her mouth to be suctioned and for her to possibly be given intermittent oxygen through a mask. We have accepted that she may only live for only a few minutes.
Another option we had to consider is whether to do a caesarian section. This could allow Lily live longer, but because of the affect on Rebecca and also the fact that the procedure would make it difficult for her to interact with Lily right after, we are planning for a natural birth even if Lily's condition deteriorates during labour. Rebecca is scheduled to be induced on Monday, March 1st, five days before her due date, although we would not be surprised if she goes into labour before that date. Rebecca's parents and Harold's dad are hoping to be in Ottawa for the birth.
When Emmie heard of Lily's condition, she offered to come and help us, which we happily accepted. She has twice before, when she was 12 and 15, spent an extended time with us helping take care of our kids. This time, however, she had to come from Holland where she was working and preparing to attend school. She will be staying with us until Friday, March 19th, at which time she will go to Vancouver for a spell and then back to Holland to work at the cafe of Harold's dad's sister (also named Emke) and her husband. We are honoured that she agreed to allow us to use her name as Lily's middle name, unsure initially whether she would find the potential sadness connected to Lily difficult. This is Emmie with Miriam at Harold's brother Auke's wedding last summer:
We have also been blessed to have had Rebecca's brother Nathan living with us recently. He was between jobs in the U.S. and arrived the week we received the initial news of Lily's condition. He found a new job in January and left for New York two days before Emmie arrived: the timing was truly providential.
For a couple of weeks now, both of us have been relatively peaceful about what may be coming. Harold's lowest point so far was the second last weekend of January. Rebecca had been encouraging him to read a book that she had found helpful, and on the Saturday, he finally did. It is about a couple whose baby girl had a lethal condition that meant she would not survive birth, and the story was recommended to us by Ida, Harold's sister. The book is "Shaming the Strong: The Challenge of an Unborn Life", written by the mother Sarah Williams. She describes the same suggestions we faced that the pregnancy should be "terminated" to avoid suffering. She had the same issue of amniotic fluid retention, although not given the option of a large withdrawal of fluid: the excessive fluid ended up complicating the birth. We relate strongly to her honest description of her suffering and that of her husband Paul, and in reading the book, Harold was able to come to terms with many of the emotions he was experiencing.
The following weekend, we were blessed to have Harold's dad visit. He unfortunately attended the funeral earlier in the week in New Brunswick of his last living uncle or aunt. It was wonderful to have him with us. The highlight was skating on the Rideau Canal on Sunday before he left for the airport to fly back to Vancouver. Ten days after the initial diagnosis back in November, we were also blessed to have had Rebecca's parents visit for 11 days. Their time with us had been planned before we knew of Lily's condition, and we were able to get away for five days, our longest time alone since we started having kids. We are thankful that our parents have been able to be with us through this process.
Two weekends ago, our friends Andrew and Veronika Baklinski, who live a couple hours outside Ottawa, visited. We are godparents to their sixth child, Basil, born this past November. We had been thinking before Lily's diagnosis of asking them to be godparents of our latest blessing, but with Lily's likely short life, we were unsure if having godparents was appropriate. The main role of godparents is to encourage their godchild to grow in the faith, praying for them as they go through life, and just like we were originally unsure about asking Emmie if we could use her name for Lily, we did not want godparents for Lily to feel awkward about the fact that their godchild may not live, or even that they might not get a chance to meet her. Spending time with them, however, made it clear to us how much they valued Lily and her life. They blessed us with the temporary use of a beautiful icon Veronika painted eleven years ago (see the picture below of the four of us and our godson Basil). It is an icon that they have given to others to use in times of sorrow. Veronika is a gifted iconographer who since having kids has found less time to paint, so we are thankful that they have allowed us to pray with one of her holy images. We have it hanging in our living room with a candleholder for seven candles underneath, one for each of our children. We light the candles most evenings as we pray for Rebecca and Lily together as a family. At the conclusion of our prayers, each of us places a hand on Rebecca's womb and quietly prays for both of them. We feel blessed that Lily will have such wonderful godparents. Veronika is hoping to come into Ottawa for the birth.
Since January 14th, we have been blessed to have the support of Roger's House (www.rogershouse.ca), a palliative care home beside the hospital that helps families with children who are gravely ill or dying. They have helped us with a birth plan and walked us through some of the many steps we may face if Lily dies. They also offer support programs after a child dies for parents and siblings that we expect to take advantage of if Lily passes away.
We have also appreciated our contacts with Prenatal Partners for Life who sent us a wonderful care package. Their website has many stories of children like Lily. We relate in particular to the story of Nathaniel (http://www.prenatalpartnersforlife.org/Stories/Trisomy18_Nathaniel.htm).
Facing the imminent possibility of death, we have for the first time had to think of the practicalities of funerals and burial. We have made some preliminary preparations in case Lily passes away and close friends have made a burial gown, hat, and booties for Lily. We also plan to have holy water with us that was blessed this past Theophany (Epiphany on the Western calendar), when we commemorated Christ's baptism. Harold will baptize Lily as soon as she comes out of the womb. On November 21st, we celebrated the Sacrament of Healing at our parish for Rebecca and Lily and hope to do so again, possibly next Saturday if the plan to induce Rebecca goes ahead on March 1st.
Roger's House has arranged for a professional photographer to be available right after Lily is born to take pictures, either before and/or after she were to pass away. Wanting to remember Lily in a special way, we were blessed to have a friend offer to pay for photos of our family to be taken through Theresa Maguire Photographic Art (her contact information is available on Facebook). Here are some of our favourite shots, taken January 25th:
For our obstetrical appointment on the 4th of this month, we brought our kids and Emmie along so that they could hear Lily's heartbeat for the first time. We had initially thought that this would be the day Rebecca would have her second amnio reduction, a procedure that uses ultrasound, and that our kids could see some ultrasound images before the procedure started. When we decided not to have the reduction, we asked if we could still have an ultrasound for the kids', and our, sake, and they thankfully agreed. Even if Lily should die before the kids get to meet her - we do hope to have them see Lily minutes after she is born - they at least had the opportunity to see her alive. We were blessed to see her open her eyes a couple of times while she was "looking" at us, a beautiful moment experienced in the knowledge that this may be the only time we see her with her eyes open. We were also blessed to see Lily in 3D. This visit was especially beneficial for the children as it has been difficult to feel Lily outside of the womb because she is so small (less than five pounds) in a large amount of fluid. Rebecca thankfully has felt Lily a lot, although less as her amniotic fluid has expanded.
Our children are handling the potential death of their sister well, although the significance of her death may not be clear to them, as it will likely not be for all of us, until after she should die. Madeleine knit a small cuddle blanket and is finishing a cross-stitch for Lily. Miriam prays the most for her little sister, constantly asking God that He "will help her not die". The boys have expressed occasional sadness and questions, and the three oldest are working on a mosaic of a lily with Rebecca to help them connect to her. Nico, now two years and three months old, talks about "baby Lily" a lot, but he is obviously the most unaware of what may be coming. He is, however, a constant joy to us and a welcome distraction. He still sleeps in a crib in our room, and we regularly wake up in the morning to him quietly asking, "Are you awake?" We had planned on having him out of our bedroom by now, but having him close helps cushion the possible loss we may be facing.
We do still think in terms of what we "may" be facing, not "will" be facing. We understand that Lily's prognosis is not good, but we serve a great God for Whom everything is possible. We don't have faith that God will necessarily heal Lily in this life; we do have hope that He will. If complete faith in God's action was always required then hope would never be necessary. More than our faith and hope, though, it is love that matters. We love Lily; God loves Lily, and we pray that His love will be sufficient no matter what comes. "My grace is sufficient for you, for my strength is made perfect in weakness." (2 Cor. 12:9)
As we enter the final days before Lily's birth, we ask that you continue to pray for us. Pray especially that the labour goes well and that it does not come suddenly: Rebecca has a history of fast labours. Pray for Rebecca's body, that the extra strain she has experienced so far will not make the labour more difficult. Pray that Lily is positioned well for delivery: she could easily flip because of her small size and the excessive fluid. Pray that God will give us as much time as possible with her. We thank Him for the time He has already given us. Pray for our children as they come to terms with what may be coming. Pray that Harold will have the strength to be the support Rebecca needs. Pray for our friends and family as they journey with us.
This has been a difficult time in our lives, but we have gone through it with a greater awareness of how much suffering there is in the world. We have had peaceful time to prepare for our tragedy, a luxury not many people have. There are those who suffer on a grand scale, as in Haiti, and then much closer to home. In particular, we think of all our friends who have had miscarriages and also of the untimely death of Rebecca's cousin Stefan in Holland three days ago from complications after routine surgery, leaving a wife and three young children behind. We pray that God will give his entire family His consolation. Our cross is small compared to what so many have suffered. We are especially blessed to be going through this with six healthy children: we feel particular sadness for those who go through a similar experience to ours when it is their first child. While the busyness of our life has limited our time to reflect on our experience, it has also brought welcome distractions and comfort.
We want to especially thank Emmie for her help since she arrived: life would have otherwise been so much more difficult right now. She is wonderful with the kids, helps Rebecca with housework, and is a joy and wonderful sister and friend to have around. Thank you again to everyone else who has been supporting us, especially our church and school communities and other close friends. We have been given many meals, and our school community has been helpful with rides and care after school during appointments. In the middle of December, our church community blessed us with a book containing prayers and best wishes and a prayer blanket where different people knit small squares that were then sewn together. We were also given a prayer shawl, where every one of the numerous beads was added with a prayer, and the final image we will leave you with (from Theresa Maguire) in this long email is of Rebecca wearing the shawl, blessed with child.
May God bless you this Lenten season, and may you know the joy of Christ's Resurrection.
We have been wanting for a few weeks to write an update on our little girl, but the busyness of life coupled with our own need to come to terms with what we may be facing have together delayed this email. To family and friends whom we have not been in contact with, we regret that it has taken us two months to provide additional news. To everyone who has supported us in prayer or in practical ways: thank you so much. Your support has helped us see God's blessing throughout the last three months.
About a month ago, we finally decided on a name for our baby girl: Lily Emke. Rebecca had liked the name Lily in the weeks leading up to our decision, and when we connected it to Christ's description of the lilies of the fields, it seemed perfect: "Consider how the lilies grow: they neither labour nor spin, yet I tell you, not even Solomon in all his splendour was arrayed like one of these." (Luke 12:27) Lily is at perfect peace in Rebecca's womb, growing as God has planned, more beautiful than anything humanity could ever create. Emke is the official name of Harold's youngest sister, Emmie. Like Lily, she is the seventh child and third girl in her family.
We purposely avoided any appointments over the Christmas break so that we could focus on our time together as a family. The evening of our last email in December, Harold flew by himself to Vancouver to celebrate his parents 40th wedding anniversary with his family, coming back on Monday the 21st in time for Joachim's birthday dinner. It was wonderful for Harold to share some time with his family, both for the celebration with the family, which Rebecca and Emmie (from Holland) took part in through Skype, and also to share some of his sadness. He was also blessed to meet his newest nephew, Johannes and Susan's seventh child, Timothy.
The first and most significant doctor's appointments since our last email were on January 7th, three weeks after that email. We have been blessed to have the same obstetrician for all our appointments, always on a Thursday, and on January 7th, we met her first, where the primary concern was the size of Rebecca's womb. Lily is almost certainly not swallowing amniotic fluid, but Rebecca's body continues to produce it nonetheless. In the three weeks since the last appointment with the obstetrician, Rebecca grew larger than she had ever been in any other pregnancy, even though she was only seven months, and besides the discomfort, she also had growing back pain which had made it almost impossible for her to function. After our appointment with the obstetrician, we had an appointment scheduled with the neonatologist, so it was decided to follow that with an amnio reduction. Similar to amniocentesis, a needle - in this case, larger - is pushed into the womb, but instead of taking a small amount of amniotic fluid for testing, large amounts of fluid are withdrawn into bottles. The hope had been to take out two litres, but the procedure was so painful for Rebecca that they had to stop after 1.2 litres. The main issue was that the needle was causing her uterus to spasm. Rebecca also began having contractions, so they decided to keep her at the hospital for observation for a couple hours until her body settled down. The procedure was very unpleasant, but it did give Rebecca immediate relief from her back pain. We had anticipated that we would need to have the amnio reduction done again at the beginning of February, but even though Rebecca is now larger than she was before the procedure, the back pain has thankfully not returned.
Before the amnio reduction, we had a very important appointment with the neonatologist to discuss options after Lily was born. She was very clinical and unfortunately found it unnecessary to discuss with us any real options other than comfort measures. She was a young doctor who was specializing in neonatology, and she did not give us the sense that she viewed Lily as a real human being. Harold in particular wanted to explore every possible option to help her live, and since she couldn't answer a few of our questions, she brought in the staff doctor who thankfully spoke in language that affirmed that Lily was truly a human being. She was able to explain that with Trisomy-18 and CDH (congenital diaphragmatic hernia), intervention for one condition was limited by and negatively impacted the other condition. For the first time, we clearly appreciated how it was the combination of both issues that severely hampered Lily's chance at life out of the womb. Even the most basic procedure of intubation - inserting a tube down the throat to give air, and the main option under consideration - would cause Lily pain, it would take time, and it would also require a partial paralysis to control her muscles. With intubation, Lily would likely still only live for a short time, and it became quickly clear to us that it would be better to spend whatever time we have with Lily without her attached to machines and able to respond to our touch. It was a very sobering realization that there was really nothing we could do, especially for Harold, who, as a father, finds it difficult to accept that he is powerless to do anything practical to help his child. If Lily survives birth, the only intervention we expect is for her mouth to be suctioned and for her to possibly be given intermittent oxygen through a mask. We have accepted that she may only live for only a few minutes.
Another option we had to consider is whether to do a caesarian section. This could allow Lily live longer, but because of the affect on Rebecca and also the fact that the procedure would make it difficult for her to interact with Lily right after, we are planning for a natural birth even if Lily's condition deteriorates during labour. Rebecca is scheduled to be induced on Monday, March 1st, five days before her due date, although we would not be surprised if she goes into labour before that date. Rebecca's parents and Harold's dad are hoping to be in Ottawa for the birth.
When Emmie heard of Lily's condition, she offered to come and help us, which we happily accepted. She has twice before, when she was 12 and 15, spent an extended time with us helping take care of our kids. This time, however, she had to come from Holland where she was working and preparing to attend school. She will be staying with us until Friday, March 19th, at which time she will go to Vancouver for a spell and then back to Holland to work at the cafe of Harold's dad's sister (also named Emke) and her husband. We are honoured that she agreed to allow us to use her name as Lily's middle name, unsure initially whether she would find the potential sadness connected to Lily difficult. This is Emmie with Miriam at Harold's brother Auke's wedding last summer:
We have also been blessed to have had Rebecca's brother Nathan living with us recently. He was between jobs in the U.S. and arrived the week we received the initial news of Lily's condition. He found a new job in January and left for New York two days before Emmie arrived: the timing was truly providential.
For a couple of weeks now, both of us have been relatively peaceful about what may be coming. Harold's lowest point so far was the second last weekend of January. Rebecca had been encouraging him to read a book that she had found helpful, and on the Saturday, he finally did. It is about a couple whose baby girl had a lethal condition that meant she would not survive birth, and the story was recommended to us by Ida, Harold's sister. The book is "Shaming the Strong: The Challenge of an Unborn Life", written by the mother Sarah Williams. She describes the same suggestions we faced that the pregnancy should be "terminated" to avoid suffering. She had the same issue of amniotic fluid retention, although not given the option of a large withdrawal of fluid: the excessive fluid ended up complicating the birth. We relate strongly to her honest description of her suffering and that of her husband Paul, and in reading the book, Harold was able to come to terms with many of the emotions he was experiencing.
The following weekend, we were blessed to have Harold's dad visit. He unfortunately attended the funeral earlier in the week in New Brunswick of his last living uncle or aunt. It was wonderful to have him with us. The highlight was skating on the Rideau Canal on Sunday before he left for the airport to fly back to Vancouver. Ten days after the initial diagnosis back in November, we were also blessed to have had Rebecca's parents visit for 11 days. Their time with us had been planned before we knew of Lily's condition, and we were able to get away for five days, our longest time alone since we started having kids. We are thankful that our parents have been able to be with us through this process.
Two weekends ago, our friends Andrew and Veronika Baklinski, who live a couple hours outside Ottawa, visited. We are godparents to their sixth child, Basil, born this past November. We had been thinking before Lily's diagnosis of asking them to be godparents of our latest blessing, but with Lily's likely short life, we were unsure if having godparents was appropriate. The main role of godparents is to encourage their godchild to grow in the faith, praying for them as they go through life, and just like we were originally unsure about asking Emmie if we could use her name for Lily, we did not want godparents for Lily to feel awkward about the fact that their godchild may not live, or even that they might not get a chance to meet her. Spending time with them, however, made it clear to us how much they valued Lily and her life. They blessed us with the temporary use of a beautiful icon Veronika painted eleven years ago (see the picture below of the four of us and our godson Basil). It is an icon that they have given to others to use in times of sorrow. Veronika is a gifted iconographer who since having kids has found less time to paint, so we are thankful that they have allowed us to pray with one of her holy images. We have it hanging in our living room with a candleholder for seven candles underneath, one for each of our children. We light the candles most evenings as we pray for Rebecca and Lily together as a family. At the conclusion of our prayers, each of us places a hand on Rebecca's womb and quietly prays for both of them. We feel blessed that Lily will have such wonderful godparents. Veronika is hoping to come into Ottawa for the birth.
Since January 14th, we have been blessed to have the support of Roger's House (www.rogershouse.ca), a palliative care home beside the hospital that helps families with children who are gravely ill or dying. They have helped us with a birth plan and walked us through some of the many steps we may face if Lily dies. They also offer support programs after a child dies for parents and siblings that we expect to take advantage of if Lily passes away.
We have also appreciated our contacts with Prenatal Partners for Life who sent us a wonderful care package. Their website has many stories of children like Lily. We relate in particular to the story of Nathaniel (http://www.prenatalpartnersforlife.org/Stories/Trisomy18_Nathaniel.htm).
Facing the imminent possibility of death, we have for the first time had to think of the practicalities of funerals and burial. We have made some preliminary preparations in case Lily passes away and close friends have made a burial gown, hat, and booties for Lily. We also plan to have holy water with us that was blessed this past Theophany (Epiphany on the Western calendar), when we commemorated Christ's baptism. Harold will baptize Lily as soon as she comes out of the womb. On November 21st, we celebrated the Sacrament of Healing at our parish for Rebecca and Lily and hope to do so again, possibly next Saturday if the plan to induce Rebecca goes ahead on March 1st.
Roger's House has arranged for a professional photographer to be available right after Lily is born to take pictures, either before and/or after she were to pass away. Wanting to remember Lily in a special way, we were blessed to have a friend offer to pay for photos of our family to be taken through Theresa Maguire Photographic Art (her contact information is available on Facebook). Here are some of our favourite shots, taken January 25th:
For our obstetrical appointment on the 4th of this month, we brought our kids and Emmie along so that they could hear Lily's heartbeat for the first time. We had initially thought that this would be the day Rebecca would have her second amnio reduction, a procedure that uses ultrasound, and that our kids could see some ultrasound images before the procedure started. When we decided not to have the reduction, we asked if we could still have an ultrasound for the kids', and our, sake, and they thankfully agreed. Even if Lily should die before the kids get to meet her - we do hope to have them see Lily minutes after she is born - they at least had the opportunity to see her alive. We were blessed to see her open her eyes a couple of times while she was "looking" at us, a beautiful moment experienced in the knowledge that this may be the only time we see her with her eyes open. We were also blessed to see Lily in 3D. This visit was especially beneficial for the children as it has been difficult to feel Lily outside of the womb because she is so small (less than five pounds) in a large amount of fluid. Rebecca thankfully has felt Lily a lot, although less as her amniotic fluid has expanded.
Our children are handling the potential death of their sister well, although the significance of her death may not be clear to them, as it will likely not be for all of us, until after she should die. Madeleine knit a small cuddle blanket and is finishing a cross-stitch for Lily. Miriam prays the most for her little sister, constantly asking God that He "will help her not die". The boys have expressed occasional sadness and questions, and the three oldest are working on a mosaic of a lily with Rebecca to help them connect to her. Nico, now two years and three months old, talks about "baby Lily" a lot, but he is obviously the most unaware of what may be coming. He is, however, a constant joy to us and a welcome distraction. He still sleeps in a crib in our room, and we regularly wake up in the morning to him quietly asking, "Are you awake?" We had planned on having him out of our bedroom by now, but having him close helps cushion the possible loss we may be facing.
We do still think in terms of what we "may" be facing, not "will" be facing. We understand that Lily's prognosis is not good, but we serve a great God for Whom everything is possible. We don't have faith that God will necessarily heal Lily in this life; we do have hope that He will. If complete faith in God's action was always required then hope would never be necessary. More than our faith and hope, though, it is love that matters. We love Lily; God loves Lily, and we pray that His love will be sufficient no matter what comes. "My grace is sufficient for you, for my strength is made perfect in weakness." (2 Cor. 12:9)
As we enter the final days before Lily's birth, we ask that you continue to pray for us. Pray especially that the labour goes well and that it does not come suddenly: Rebecca has a history of fast labours. Pray for Rebecca's body, that the extra strain she has experienced so far will not make the labour more difficult. Pray that Lily is positioned well for delivery: she could easily flip because of her small size and the excessive fluid. Pray that God will give us as much time as possible with her. We thank Him for the time He has already given us. Pray for our children as they come to terms with what may be coming. Pray that Harold will have the strength to be the support Rebecca needs. Pray for our friends and family as they journey with us.
This has been a difficult time in our lives, but we have gone through it with a greater awareness of how much suffering there is in the world. We have had peaceful time to prepare for our tragedy, a luxury not many people have. There are those who suffer on a grand scale, as in Haiti, and then much closer to home. In particular, we think of all our friends who have had miscarriages and also of the untimely death of Rebecca's cousin Stefan in Holland three days ago from complications after routine surgery, leaving a wife and three young children behind. We pray that God will give his entire family His consolation. Our cross is small compared to what so many have suffered. We are especially blessed to be going through this with six healthy children: we feel particular sadness for those who go through a similar experience to ours when it is their first child. While the busyness of our life has limited our time to reflect on our experience, it has also brought welcome distractions and comfort.
We want to especially thank Emmie for her help since she arrived: life would have otherwise been so much more difficult right now. She is wonderful with the kids, helps Rebecca with housework, and is a joy and wonderful sister and friend to have around. Thank you again to everyone else who has been supporting us, especially our church and school communities and other close friends. We have been given many meals, and our school community has been helpful with rides and care after school during appointments. In the middle of December, our church community blessed us with a book containing prayers and best wishes and a prayer blanket where different people knit small squares that were then sewn together. We were also given a prayer shawl, where every one of the numerous beads was added with a prayer, and the final image we will leave you with (from Theresa Maguire) in this long email is of Rebecca wearing the shawl, blessed with child.
May God bless you this Lenten season, and may you know the joy of Christ's Resurrection.
December 17, 2009
Dear family,
It has been over five weeks since we sent out our news about our little one. We have not had any more news until last week when we finally started in on the round of specialists. There was a mix-up and our information did not make it to the high-risk unit until we started calling around ourselves, but in the end this was a blessing as we had a very peaceful month, lifted up by the prayers of others, praying for healing and trusting in God.
The appointment started with an hour-long ultrasound (see the two attached pictures), where we received confirmation that our baby is indeed a girl, followed by an appointment with an obstetrician. The ultrasound was very uplifting: it was wonderful to see our baby in three-dimensions, looking so beautiful. The results, however, were not positive. The doctor, rather than focussing on the diaphragmatic hernia as we had anticipated, was primarily concerned with apparent chromosomal issues, what we had originally considered a secondary issue. Her concerns were enough for us to decide to do an amniocentesis, which occurred on Tuesday, preceded by an appointment with a geneticist on Monday.
We received the results of the amnio yesterday, and it is with great sorrow that we were told that our baby has trisomy-18, a fatal condition. Trisomy refers to three strands in a chromosome, instead of two, and when this occurs in either the 13th or 18th chromosome, as is the case with our baby, significant abnormalities occur. The other possibly trisomy is 21 and is the cause of Down's Syndrome. A child with either trisomy 13 or 18 can die in utero or during labour, and if our baby is blessed to leave Rebecca's womb alive, we pray that God allows us the time to both bond with her and also prepare to let her go.
Because of the concerns raised before the amnio, we had anticipated that our little girl had one of the two serious trisomy conditions, so the news yesterday did not come as a shock. Since last Thursday, we have sensed that we were entering a time of sadness, but it is a sorrow accompanied by the joy of knowing our little girl, even if it ends up being for too short a time.
Today we had another appointment with the same high-risk pregnancy physician as last Thursday. We are not focussed on the particular symptoms our baby is facing right now because they could change somewhat, but as we get closer to birth, we will need to decide what degree of intervention we want to make. We are not inclined to do anything heroic, but certain procedures may extend her life for long enough that the procedures are worthwhile. Surgery in Toronto seems unlikely now. Please pray that God will give us the wisdom to make the right decisions.
We are still praying for God to heal our baby, but if God does not bring healing now, He will do so after death, and in both cases, it is a miracle. It is not a question of whether she will be healed, but when. Our baby will be dancing in His presence sooner or later. While we hope and pray that God will heal her now, our prayer is primarily that God would give our baby a death that is painless and peaceful while still hoping for a miracle on this side of heaven. We also pray that our other kids, especially our older ones, have the grace to prepare for whatever is to come.
We thank all of you who have offered support, both in prayer, in words of encouragement, and in practical ways. We miss not having our family close in times like this, but we thank God for the amazing community He has blessed us with in Ottawa.
Our baby girl continues to be very active in the womb, which is a great comfort. We have not yet named her, but hope to do so soon. When we do, we will let you know. We do not have another appointment scheduled until after the New Year, and we will pass along any updates.
As we prepare for Christmas, we know that Christ came into the world to bring life. His Life is present in our little girl, and for that we give thanks through our tears.
November 9, 2009
Dear family and friends,
The pregnancy has been progressing well, with the baby due March 6th, and his past Friday, we had our first ultrasound. The ultrasound, however, indicated some possible medical issues, and we were scheduled for a more detailed ultrasound this morning where the issues were confirmed.
The most serious issue is a Congenital Diaphragmatic Hernia (CDH). The diaphragm separates the lower organs from the chest cavity, and in the case of a CDH, there is a hole in the diaphragm that allows the lower organs to move into the chest cavity. This affects the lungs, possibly delaying their development, which principally happens between the 20th to 26th weeks. Rebecca started her 24th week last Saturday. For more information on CDH, see http://www.childrenshospital.org/az/Site476/mainpageS476P0.html. For about ten years, one possible remedy was in utero surgery, but this is no longer practiced as it was not found to increase health outcomes. Current practice is to deliver the baby through c-section as early as possible and perform immediate surgery to fix the hole and give medical help to the lungs. In our baby's case, the hole is quite large, which increases the likelihood that the lungs will not develop. The ultrasound doctor's prognosis is that the baby has less than a 50% chance of surviving birth.
There is also a second issue. There are at least six indications that there may be a chromosomal issue, would likely mean that the baby has Down's Syndrome. None of the indications on its own is of great concern, but together indicate an increased possibility. The six indications our child has are a hole in the heart (which is not uncommon and can close naturally), two cysts in the brain (which, too, are not uncommon and can disappear naturally), extra fluid in the brain, clenched fists during the ultrasound (baby's will naturally clench their fists, but a child with Down's will do this more consistently), the baby is quite small, and there are only two blood vessels in the umbilical cord when there should be three.
Both the ultrasound doctor and our wonderful, pro-life family doctor recommended getting amniocentesis in a few weeks, when the procedure no longer poses any real risk to the baby, to clarify the chromosomal question. At that time, an ultrasound would also provide better information on the baby's lung development and whether any of the chromosomal indications persist.
We don't normally find out the sex of our babies until they are born, but in light of this news, we did ask, and the baby is likely a girl, which is how we are now calling her. When amniocentesis confirms the sex of the baby, we will likely name her so that we can bond with her as much as possible throughout this whole process.
The ultrasound doctor did mention the possibility of terminating the pregnancy, but he accepted our decision to do whatever we can to help our child live. It is possible that her condition will be severe enough that medical intervention would be fruitless, in which case we would likely deliver her naturally and enjoy whatever time God gives us with her. This possibility that our newest princess will not live is real to us, but until we have greater clarity in a few weeks, we are praying and hoping that the baby's condition improves.
We normally deal with the Civic location of the Ottawa Hospital, but in order to be close to the Children's Hospital of Eastern Ontario (CHEO), Rebecca is being admitted to the high risk unit at the General location. We are preparing ourselves for many visits to obstetricians, pediatric specialists, and geneticists and look forward to occasional reassuring visits with our family doctor. The baby would likely have to be operated on at Sick Kid's in Toronto, and our family doctor raised the possibility of even moving there already because he knows two excellent high risk obstetricians who practice there. If our baby's health would benefit from such a temporary move, we would consider it, but a more likely scenario is transferring to Toronto about a month before the birth, delivering the baby there so that we are close to the pediatric specialists, and making day trips for appointments leading up to the birth. The alternative is delivery at the General, stabilization of the baby at CHEO, and then a transfer to Toronto for surgery. If the baby does have surgery in Toronto, we would likely stay in Toronto while it recovers.
We shed a number of tears on Friday and more this morning, especially as we walked from the ultrasound to our family doctor's office. We thankfully had to wait a little while to see him, which allowed us to calm down, and he was much more positive than the ultrasound doctor had been. As we were waiting, Harold heard the refrain of a song playing on the radio that repeated the words "beautiful girl". The song probably had a romantic connection, but for him, the words encapsulated how we view our latest blessing: she is a beautiful girl, our beautiful girl, no matter what happens. She was very active in the womb, and we take comfort in the fact that she is not suffering.
We told our children some preliminary information on Friday and will be keeping them up-to-date on the most important news. We are praying about this as a family and will come through this as a family.
We apologize for the impersonal nature of this email, but it is difficult, and time-consuming, for us to repeat our sad news to everyone who cares about us. We appreciate your prayers, especially in the crucial few weeks ahead, and we will send out follow-up emails with any updates.
To God be glory in all things.
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