Bethany is due to make her appearance on Wednesday morning. We met with the doctors and midwife yesterday, and after much discussion and many tears, we decided to have a c-section rather than go for a natural birth. There were many factors - her head and abdomen continue to grow at a rapid rate due to excess fluid on the brain and in the kidneys. There was a chance of laboring for days and ending up with an emergency c-section. It was also quite unlikely that she would make it through an induction alive. At Monday's ultrasound, we could see that there is no fluid at all around her, to protect her from the contractions and compression. This will allow us to meet her, for her to be born alive, be baptized, and die in our arms, instead of in my womb.
We've set funeral arrangements for 10:00 am on Tuesday, August 9, at Saint Ursula Church in Parkville. Anyone is welcome to attend.
I'm struggling a bit to keep it together today. This is such a unique experience. I've never known when my babies would be born, nearly to the minute. With Peter we had some hope of hours, maybe even days if we were really lucky. Bethany will likely have only minutes. It's an indescribable feeling, and I am struggling to find that joy today that I want and need to have. I'm so grateful that she will be without pain, without deformities, in the arms of our Lord, just a day from now. But that isn't making her impending death any easier today.
As always, your prayers are so appreciated.
Tuesday, August 2, 2016
Wednesday, July 27, 2016
On suffering, and a brief update
Sacrifice has been on my mind this entire pregnancy. Why are we being asked to bare and give up yet another child? How do I find the value in this sacrifice, this giving up of self? More than a few times I have found myself feeling bitter or frustrated, with 3 months of nausea, constant fatigue since January, insomnia nightly, pregnancy discomforts that make even walking difficult. And I don't have the benefit of knowing at the end of 9 months of sacrificing my own comfort and well-being that I'll have a cute, squishy, delicious smelling baby bringing me joy. I remind myself that all life is precious, all life adds value, even if the value isn't immediately evident, and that this is still my daughter, with as much worth or significance, to me and to God, as any of my other children. But even that fails to speak to the full meaning behind a true sacrifice, one made not with bitterness in ones heart, but out of love and even joyfully. Today I read this in Bishop Robert Barron's Eucharist. I thought it was so beautiful and moving that I read it several times, and then knew I needed to write about it.
The loss of my children is not evil per se. Death or disease is not intrinsically evil, but is the result of a fallen world. Through the act of not only giving up my body for the benefit of my daughter, but ultimately, in the very giving up of my daughter, I am uniting my suffering to that of Christ. Truly, without Christ, suffering has no meaning. Can my small sacrifice be used even for a greater good, to actually address a world gone wrong? A world in which over one hundred thousand babies are aborted each day? A world in which priests are slaughtered while celebrating the Mass? If that is true, then I gladly accept my cross, and I will bear it with joy.
This has been a bit of an emotional week, with seeing Bethany on ultrasound, and finding more about her current development. Her kidneys continue to grow larger than they should be, and there is so much fluid on her brain that her head has reached the size of that of a full-term baby even though I am only at the start of the third trimester. There is nearly no amniotic fluid, and I've been very concerned for several months that she may be experiencing pain or discomfort. So, when on Monday the perinatalogist said we may need to induce labor in the next few weeks, or I'll be facing a c-section due to the size of her head and abdomen, there was some relief. I am ready to meet sweet Bethany, even though it means saying goodbye. I am ready for her to be with Jesus, free of pain, deformities, or illness.
I was recently asked why we keep having babies when we know this can happen. I am sure many people have wondered, but only one person was bold enough to actually ask. My response was that only God knows why life is given and life is taken away. Our vocation as married Catholics means an openness to life, and a trust that God is in control. And just maybe, the lives of these babies we've loved and lost have impacted the world in ways we may never see in this life.
If you're suffering through something right now, I will leave you with this encouraging verse to medicate on:
A world gone wrong can be addressed only through sacrifice, that is to say, through an act of love which takes on evil and reworks it from within. In Jerusalem, the night before his death, Jesus indeed hosted a festive meal at which humanity and divinity were reconciled, but at the heart of the feast was sacrifice, the giving away of his body and blood. An act of self-negating love made possible the communion that they enjoyed.
The loss of my children is not evil per se. Death or disease is not intrinsically evil, but is the result of a fallen world. Through the act of not only giving up my body for the benefit of my daughter, but ultimately, in the very giving up of my daughter, I am uniting my suffering to that of Christ. Truly, without Christ, suffering has no meaning. Can my small sacrifice be used even for a greater good, to actually address a world gone wrong? A world in which over one hundred thousand babies are aborted each day? A world in which priests are slaughtered while celebrating the Mass? If that is true, then I gladly accept my cross, and I will bear it with joy.
This has been a bit of an emotional week, with seeing Bethany on ultrasound, and finding more about her current development. Her kidneys continue to grow larger than they should be, and there is so much fluid on her brain that her head has reached the size of that of a full-term baby even though I am only at the start of the third trimester. There is nearly no amniotic fluid, and I've been very concerned for several months that she may be experiencing pain or discomfort. So, when on Monday the perinatalogist said we may need to induce labor in the next few weeks, or I'll be facing a c-section due to the size of her head and abdomen, there was some relief. I am ready to meet sweet Bethany, even though it means saying goodbye. I am ready for her to be with Jesus, free of pain, deformities, or illness.
I was recently asked why we keep having babies when we know this can happen. I am sure many people have wondered, but only one person was bold enough to actually ask. My response was that only God knows why life is given and life is taken away. Our vocation as married Catholics means an openness to life, and a trust that God is in control. And just maybe, the lives of these babies we've loved and lost have impacted the world in ways we may never see in this life.
If you're suffering through something right now, I will leave you with this encouraging verse to medicate on:
We know that all things work for
good for those who love GOD,
who are called according to
His purpose. Romans 8:28
Even our greatest sufferings, most painful tragedies, and most difficult crosses can work for good if God wills it, if we accept it gladly, and we follow His will.
Thursday, June 9, 2016
It's a girl! And the genetic test results.
It's a girl! I don't always trust my intuition, but I had a really strong feeling that this baby was a girl. I feel like God named this baby. From early on in the pregnancy, I knew she was a Bethany. It's not a name that has ever been on one of my baby name lists, so it was a bit of a surprise. But it seems fitting for this baby, to be named after the city where Jesus spent so much time, and where he raised Lazurus from the dead. It means House of Song and House of Affliction, which also seems appropriate as I pray that Bethany isn't suffering, and know that Jesus will raise her from the dead and take her to live with him and her siblings. Julie is choosing the middle name, and is still undecided, but Faith is on the short list.
The bigger shock was the results from the CVS test we had two weeks ago. We were fully expecting to receive a diagnosis of full trisomy 13 based on clinical findings on ultrasound. The brain, kidney, and heart abnormalities are hallmarks of full trisomy 13. But it's only partial. She has the same genetic makeup as Natalie. My first thought was what a miracle Natalie is. Natalie is so healthy, and yet Bethany is so sick. Aside from some minor issues as a newborn, and needing to have her tonsils and adenoids removed due to obstructive apnea, she has not had any health problems. Her presentation of partial trisomy 13 has been nearly all developmental. It's really astonishing that the same genetic disorder can lead to such severe symptoms leading to death in one child, and yet Natalie can be well enough to ask for french fries on her iPad as she gets off the school bus. Genetics are a really interesting, sometimes confusing and terrifying, and always fascinating thing.
Bethany is really moving a lot. I find myself worrying about her frequently, whether she is in any pain from the lack of fluid. I know she is very tightly curled in my uterus. I have prayed to God through tears to take her now if she is suffering at all. But for now, the pregnancy continues, and we prepare to meet her, and say goodbye, and bury her with Molly, Peter, and Sarah, who we lost at 7 weeks. Some days I can't believe we are going down this road again. Some days I even let myself wallow in self pity, just for a while. And then I remember how lucky we are that losing so many babies IS rare, that generations of mothers before me probably took it for granted that not all their children and nieces and nephews would make it to adulthood. That doesn't make the grief any easier, any less, but somehow it makes me feel less alone.
For now I try not to think about it too much. I know we have to purchase another cemetery plot, and hope the one next to Peter has remained reserved for us. I have to choose readings, and songs, and burial garments all over again. I remember acutely doing all of this the first time. I remember all the people I reached out to, the organizations that exist for no other reason than to support people in my position. But I haven't done that this time. Why? I am not sure. Other than that I feel like a veteran. I not only carried Peter for 42 weeks, but then Molly for 19 weeks. What could they tell me that I don't already know? Somehow it feels sort of like how the second babies rarely get baby showers. Sure you don't need the gifts, but why don't we celebrate their lives as well? Oh, you're losing another baby? That must be tough. I wonder to myself, does that make it easier, or harder? Should I be able to deal with this smoothly and unemotionally, because I've already done it? Somehow I think its the opposite. If I really think about it, if I really, really, consider that I'm going through all this yet again, I would completely crumble. So I build a small wall. I go about my daily life, and lie to myself a little. I tell myself it's really not THAT big of a deal because I came through this once, so clearly I can make it through it again. But then I spend so much time NOT focusing on what's happening, that I forgot it's not just happening to me. This baby has sisters, a father, grandparents. And then I remember how completely crappy and unfair this entire thing is.
The bigger shock was the results from the CVS test we had two weeks ago. We were fully expecting to receive a diagnosis of full trisomy 13 based on clinical findings on ultrasound. The brain, kidney, and heart abnormalities are hallmarks of full trisomy 13. But it's only partial. She has the same genetic makeup as Natalie. My first thought was what a miracle Natalie is. Natalie is so healthy, and yet Bethany is so sick. Aside from some minor issues as a newborn, and needing to have her tonsils and adenoids removed due to obstructive apnea, she has not had any health problems. Her presentation of partial trisomy 13 has been nearly all developmental. It's really astonishing that the same genetic disorder can lead to such severe symptoms leading to death in one child, and yet Natalie can be well enough to ask for french fries on her iPad as she gets off the school bus. Genetics are a really interesting, sometimes confusing and terrifying, and always fascinating thing.
Bethany is really moving a lot. I find myself worrying about her frequently, whether she is in any pain from the lack of fluid. I know she is very tightly curled in my uterus. I have prayed to God through tears to take her now if she is suffering at all. But for now, the pregnancy continues, and we prepare to meet her, and say goodbye, and bury her with Molly, Peter, and Sarah, who we lost at 7 weeks. Some days I can't believe we are going down this road again. Some days I even let myself wallow in self pity, just for a while. And then I remember how lucky we are that losing so many babies IS rare, that generations of mothers before me probably took it for granted that not all their children and nieces and nephews would make it to adulthood. That doesn't make the grief any easier, any less, but somehow it makes me feel less alone.
For now I try not to think about it too much. I know we have to purchase another cemetery plot, and hope the one next to Peter has remained reserved for us. I have to choose readings, and songs, and burial garments all over again. I remember acutely doing all of this the first time. I remember all the people I reached out to, the organizations that exist for no other reason than to support people in my position. But I haven't done that this time. Why? I am not sure. Other than that I feel like a veteran. I not only carried Peter for 42 weeks, but then Molly for 19 weeks. What could they tell me that I don't already know? Somehow it feels sort of like how the second babies rarely get baby showers. Sure you don't need the gifts, but why don't we celebrate their lives as well? Oh, you're losing another baby? That must be tough. I wonder to myself, does that make it easier, or harder? Should I be able to deal with this smoothly and unemotionally, because I've already done it? Somehow I think its the opposite. If I really think about it, if I really, really, consider that I'm going through all this yet again, I would completely crumble. So I build a small wall. I go about my daily life, and lie to myself a little. I tell myself it's really not THAT big of a deal because I came through this once, so clearly I can make it through it again. But then I spend so much time NOT focusing on what's happening, that I forgot it's not just happening to me. This baby has sisters, a father, grandparents. And then I remember how completely crappy and unfair this entire thing is.
Tuesday, May 31, 2016
Going down this road again
It's been quite a while I've written. I would like to make this a more regular thing, since writing is so cathartic for me. It's been almost 2 years since we lost Molly. I can't believe it's been so long, and even more so, I can't believe we are here yet again.
That's right. This is pregnancy number 7 for us, and will be loss number 5. For those of you following along at home, we've got a healthy daughter, a healthy-but-severely-delayed daughter due to partial trisomy 13, two first trimester miscarriages, and second trimester miscarriage, a son who died when he was 3 hours old, and now are pregnanct again with a child who is not destined to grow up in this world.
We found out in January that I was pregnant. I was immediately struck by the differences between how I react to a pregnancy, and how most other married mothers would react to a pregnancy. The normal response would be things like, maybe Emily will be ready to move to the big girl car seat so this baby can use the convertible seat. Will I need a new stroller? How should we shuffle kids and rooms to make room for a new baby? Do you think Matthew will be jealous of the attention the new baby will receive? For us, it almost stops at "I am pregnant". There is no planning. Sure, we dream. We wonder. We talk names a little bit (no matter what happens the baby gets a name). We think about what could be, but we think of what could be in both positive and negative terms. Will this child need lifelong care? Will I lose the baby next week or next month? Will we lose another baby at birth?
My pregnancies are always a guessing game, at least until that first ultrasound. This time we saw the baby at about 13 weeks, in early April. It was pretty evident right away things were not good. It's been a long time (8 years!) since I saw a normal ultrasound. We knew we weren't seeing anencephaly. But the head still didn't look normal. As usual, those ultrasound techs must practice their faces of steel. She gave nothing away. But the perinatalogist came in, and the look of pity made it evident. We were looking at probable full trisomy 13, she said, a less likely but still possible outcome of our balanced translation. There are brain, kidney, and heart abnormalities, possibly quite severe and life limiting. We already knew a lot about trisomy 13. Natalie has partial trisomy 13, in where she has about 30% more genetic material on one 13th chromosome (chromosomes come in pairs) than she is supposed to. It's suspected that this baby has a full third copy of the 13th chromosome. As far as trisomies go, 13, 18, and 21 (Down Syndrome) are the most common. We know that 90% of babies do not make it to their first birthday. We also know that virtually none of those 10% survivors have the severe brain abnormality that this baby does. We found out last week that the kidneys are so poorly functioning that there is almost no amniotic fluid, so the baby's lungs are not able to to properly develop.
My reaction this time around has been much different than with Peter's diagnosis. I still look back on that day as one of the worst days of my life. The shock of hearing that your child is going to likely be born alive but then die in your arms is something no parent can ever really prepare for or fully understand until they've been there. The grief, the mourning of a life that is still inside you, preparing for death when you literally feel their kicks. It's not a feeling easily put into words. But this time was different. This time, I know what to expect. I know that there is joy mixed with the grief. I know that we will overcome that grief. I know my husband and I are strong people, that God has blessed our marriage and granted us the gift of strength. I know I have so many people praying for us. I know there is a light at the end of the tunnel. And I know that, God willing, when I get to heaven, I will have 5 precious souls there to greet me and call me momma.
That's right. This is pregnancy number 7 for us, and will be loss number 5. For those of you following along at home, we've got a healthy daughter, a healthy-but-severely-delayed daughter due to partial trisomy 13, two first trimester miscarriages, and second trimester miscarriage, a son who died when he was 3 hours old, and now are pregnanct again with a child who is not destined to grow up in this world.
We found out in January that I was pregnant. I was immediately struck by the differences between how I react to a pregnancy, and how most other married mothers would react to a pregnancy. The normal response would be things like, maybe Emily will be ready to move to the big girl car seat so this baby can use the convertible seat. Will I need a new stroller? How should we shuffle kids and rooms to make room for a new baby? Do you think Matthew will be jealous of the attention the new baby will receive? For us, it almost stops at "I am pregnant". There is no planning. Sure, we dream. We wonder. We talk names a little bit (no matter what happens the baby gets a name). We think about what could be, but we think of what could be in both positive and negative terms. Will this child need lifelong care? Will I lose the baby next week or next month? Will we lose another baby at birth?
My pregnancies are always a guessing game, at least until that first ultrasound. This time we saw the baby at about 13 weeks, in early April. It was pretty evident right away things were not good. It's been a long time (8 years!) since I saw a normal ultrasound. We knew we weren't seeing anencephaly. But the head still didn't look normal. As usual, those ultrasound techs must practice their faces of steel. She gave nothing away. But the perinatalogist came in, and the look of pity made it evident. We were looking at probable full trisomy 13, she said, a less likely but still possible outcome of our balanced translation. There are brain, kidney, and heart abnormalities, possibly quite severe and life limiting. We already knew a lot about trisomy 13. Natalie has partial trisomy 13, in where she has about 30% more genetic material on one 13th chromosome (chromosomes come in pairs) than she is supposed to. It's suspected that this baby has a full third copy of the 13th chromosome. As far as trisomies go, 13, 18, and 21 (Down Syndrome) are the most common. We know that 90% of babies do not make it to their first birthday. We also know that virtually none of those 10% survivors have the severe brain abnormality that this baby does. We found out last week that the kidneys are so poorly functioning that there is almost no amniotic fluid, so the baby's lungs are not able to to properly develop.
My reaction this time around has been much different than with Peter's diagnosis. I still look back on that day as one of the worst days of my life. The shock of hearing that your child is going to likely be born alive but then die in your arms is something no parent can ever really prepare for or fully understand until they've been there. The grief, the mourning of a life that is still inside you, preparing for death when you literally feel their kicks. It's not a feeling easily put into words. But this time was different. This time, I know what to expect. I know that there is joy mixed with the grief. I know that we will overcome that grief. I know my husband and I are strong people, that God has blessed our marriage and granted us the gift of strength. I know I have so many people praying for us. I know there is a light at the end of the tunnel. And I know that, God willing, when I get to heaven, I will have 5 precious souls there to greet me and call me momma.
Tuesday, July 15, 2014
Goodbye for now
Our sweet Molly Elizabeth went to her heavenly home Saturday morning, at 19 weeks gestation. And if I've learned anything from this unique experience, it's that we are not in control. Truly we might as well give up any illusion of control, because there's just none to be found. It seems I've learned a lesson from each of my 6 pregnancies. Or perhaps it would be better noted that I've learned bits and pieces of a lesson, each filling in a little more of a puzzle, because I still can't see the full picture.
With my first baby I thought being pregnant meant I would get to raise a child. I was, thankfully, right. But looking back the assumption was absurd. With my second pregnancy, I hoped for my girls to grow to be best friends, but their relationship will be quite different than I had imagined. By the third, I knew nothing was for certain, and lost that baby. But with my fourth, Peter, even more shattering news broke us. I didn't think I would ever have to face actually losing an infant. Who does? With this baby I thought that no anencephaly would mean she would live, even if she were developmentally delayed. I thought making it to 14 weeks meant I would make it to term. But once again, our plans are not ours to make. We are not in control of life, of our children's lives.
I don't know if God wanted this to happen, or simply allowed it to happen in order to accomplish some other, greater good. So often suffering draws us nearer to him, as it's doing for me with this devastating loss. Perhaps we will be a stronger, more faith filled family as a result of the experiences we've endured. I know Peter drew us closer to Him as children of God, and closer to each other as husband and wife. It's one blessing amongst the pain.
I started reading a book about suffering from a Christian perspective. I think the author makes a very valid point when discussing the faith of people in third world countries, unspeakable poverty and suffering, and war torn nations. In times of stress their faith increases, church attendance increases, reliance on God increases, whereas in wealthy nations such as our own, those things continue to decrease, and any trial has people questioning God's very existence. He claims (I have not researched myself) that questioning why God allows suffering is unique to Christianity, and that the answer can be found within Christianity. I just know I can't wait to find out how this all turns out, why it all happens the way it does, and I can't wait to meet my 4, very loved children when I get there.
With my first baby I thought being pregnant meant I would get to raise a child. I was, thankfully, right. But looking back the assumption was absurd. With my second pregnancy, I hoped for my girls to grow to be best friends, but their relationship will be quite different than I had imagined. By the third, I knew nothing was for certain, and lost that baby. But with my fourth, Peter, even more shattering news broke us. I didn't think I would ever have to face actually losing an infant. Who does? With this baby I thought that no anencephaly would mean she would live, even if she were developmentally delayed. I thought making it to 14 weeks meant I would make it to term. But once again, our plans are not ours to make. We are not in control of life, of our children's lives.
I don't know if God wanted this to happen, or simply allowed it to happen in order to accomplish some other, greater good. So often suffering draws us nearer to him, as it's doing for me with this devastating loss. Perhaps we will be a stronger, more faith filled family as a result of the experiences we've endured. I know Peter drew us closer to Him as children of God, and closer to each other as husband and wife. It's one blessing amongst the pain.
I started reading a book about suffering from a Christian perspective. I think the author makes a very valid point when discussing the faith of people in third world countries, unspeakable poverty and suffering, and war torn nations. In times of stress their faith increases, church attendance increases, reliance on God increases, whereas in wealthy nations such as our own, those things continue to decrease, and any trial has people questioning God's very existence. He claims (I have not researched myself) that questioning why God allows suffering is unique to Christianity, and that the answer can be found within Christianity. I just know I can't wait to find out how this all turns out, why it all happens the way it does, and I can't wait to meet my 4, very loved children when I get there.
Monday, June 30, 2014
Truly Unexpected
We received the preliminary results from the amniocentesis today. The diagnosis is triploidy. I am still somewhat in shock. It's not at all related to the balanced translocation, and appears to be a very, very rare fluke. It's a birth defect in which every cell in the body has three of each chromosome instead of two. So it's a trisomy of everything, not just one chromosome like Down's Syndrome or trisomy 13. There is a possibility that it's mosaic triploidy, in which some cells are normal and some contain 3 copies, and that is less severe. There appears to be less than 60 cases documented world wide, although I am seeing a lot of articles and blogs with that figure mentioned and no statistic to back it up so far. There's a chance that the baby could live months or, very unlikely, but possibly, years, with the mosaic form.
I am experiencing so many fears and emotions. Some are similar to when Peter was diagnosed, and some are different and somewhat unexpected. Mostly I still feel stuck. While I am glad to have information (information is like a drug for me....I can research something for hours and hours and still hunger for more details. I need every scrap of information I can find) there is still a lot we just can't know. Full versus mosaic is an important piece of the puzzle. But more than half of babies with this diagnosis die in the first trimester. I am already 17 weeks. Most who make it that far still won't make it to term alive. So, unlike with Peter, we have no idea how long we have with this baby with us- days, weeks, months, or even years. It's very stressful; even just thinking about planning out-of-state trips to see family or weekend getaways are fraught with "what-if's".
On a happy note, the baby is a girl. Stay tuned for the name :)
I am experiencing so many fears and emotions. Some are similar to when Peter was diagnosed, and some are different and somewhat unexpected. Mostly I still feel stuck. While I am glad to have information (information is like a drug for me....I can research something for hours and hours and still hunger for more details. I need every scrap of information I can find) there is still a lot we just can't know. Full versus mosaic is an important piece of the puzzle. But more than half of babies with this diagnosis die in the first trimester. I am already 17 weeks. Most who make it that far still won't make it to term alive. So, unlike with Peter, we have no idea how long we have with this baby with us- days, weeks, months, or even years. It's very stressful; even just thinking about planning out-of-state trips to see family or weekend getaways are fraught with "what-if's".
On a happy note, the baby is a girl. Stay tuned for the name :)
Saturday, June 28, 2014
Here we go again
I'm pretty sure we are insane.
Because here we go again. We are in our sixth pregnancy. I am still somewhat in shock that I have been pregnant six times, and you would never know it by the number of car seats in my car or dining room chairs at my table. In order, we have Julie, Natalie, miscarriage, Peter, miscarriage, and this little soul yet to be named. I am 17 weeks but I don't look like it. That's because the baby is measuring closer to 14 weeks. There are echogenic foci on the heart (thank you Google....I'd never heard of them either), and the ventricles in he brain are enlarged. Isolate them and they don't cause major concern. Put them all together and they are pretty strong indications of a genetic condition. We, of course, fear the worst. We don't know for sure yet, so Steve and I decided to pray our hardest for a miracle. We spent the Solemnity of the Sacred Heart of Jesus asking for a miracle, a complete and total healing of this baby in my womb, for the grace of a healthy son or daughter.
Am I insane? Because it kind of feels like it. But that urge, that desire to grown one's family, it's somethings just so much stronger than the fear of the unknown. I've never felt like my family was complete. Even after everything we've been through, and the odds that we've been given (which I now think are total crap, by the way) we were willing to take that chance, just having faith in a loving God who always cares for us and knows our needs. But I was so sure, we were both so sure that this would be the one. This would be the healthy baby that we have so longed for. Still we pray and hope. And feel a little insane.
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