Saturday, January 29, 2011
Friday, January 28, 2011
Peace of my heart
It has been almost one month. On December 28, I had a nice lunch out with Adrian and I remember the baby kicking away while we sat in the restaurant. "She likes Tilapia," I said. After lunch, Adrian dropped me off at my OB's office for my routine check. Angeline's heart rate was checked (normal). My exam was as expected. I had a relaxing evening at home that night, I was lounging around, watching a movie. The following morning I woke up and she was gone. Just like that.
What a month...
It seems that the autopsy may yield some answers after all. Although we do not have the full conclusive report yet, I have received a preliminary report. It seems that Angeline's heart had some significant abnormalities, which probably resulted in her death. Other findings suggested that she had been in stressful conditions for some time, I believe she was hanging on and fighting for as long as she possibly could.
This came as a surprise. As I have mentioned before, none of my screening tests raised any suspicion of cardiac abnormalities. I had routine ultrasounds which were apparently normal. I actually had repeat ultrasound imaging of the outflow tracts of the heart at 22 weeks. Not because anything was thought to be abnormal, but just because she was moving so much at the 20 week scan, there was some difficulty in actually getting the views they needed. No one suspected a cardiac problem at any point.
In a sense, I believe learning of Angeline's heart defect will give us some peace. First of all, I have decided that nothing is worse than knowing nothing. In more than half the cases of stillbirth in the US, families never learn why their baby died. Not knowing is such a terrible haunting experience. The pain of thinking that your normal, healthy baby was lost for unknown reasons is excruciating. This past month I have suffered with the belief that our healthy girl was lost. It appears that our case will be one where we are afforded the opportunity for a sense of closure as regards the cause of her death.
This finding presents the possibility that Angeline's loss before birth was the lesser of two evils. If she were to have been born with a severe heart defect, she may have been subjected to surgeries and invasive procedures as an infant, maybe to survive, but maybe not. What would have been the quality of her life? It would have been infinitely harder to watch my infant girl suffer and die after trying to fix her broken heart...
So strange... Of all the things I was worried about with my pregnancy, this wasn't one of them. I was very anxious about a first trimester loss. I was a little worried about genetic problems such as Down's Syndrome. As time went on, I worried about the possibility of preterm labor - of course, by the time I was almost 31 weeks I felt I was almost in the clear. A few more weeks and she would probably do just fine, even if I went into labor early. It never even occurred to me to worry about congenital heart disease. I actually have a friend whose baby was born with Tetralogy of Fallot, and thanks be to God, did very well with his repair surgeries and is now thriving. How unlikely it would be for my baby to have a congenital heart defect!
This just goes to demonstrate something my mother and I have said many times: it just doesn't make much sense to worry, because it is not the things that you worry about, but the things that you least expect that come up and really take you down. I have experienced this and seen this time and time again.
To know that little Angeline's heart had not formed properly at a very early stage of development reinforces the fact that every life is a complex and miraculous victory. The development of a healthy baby is absolutely nothing short of a miracle. In Angeline's case, I believe that she hung on as long as she could. In doing so, she touched so very many lives here on earth.
I will close with I lovely sentiment from the website of Now I Lay Me Down To Sleep:
"There is no foot too small that it cannot leave an imprint on this world."
What a month...
It seems that the autopsy may yield some answers after all. Although we do not have the full conclusive report yet, I have received a preliminary report. It seems that Angeline's heart had some significant abnormalities, which probably resulted in her death. Other findings suggested that she had been in stressful conditions for some time, I believe she was hanging on and fighting for as long as she possibly could.
This came as a surprise. As I have mentioned before, none of my screening tests raised any suspicion of cardiac abnormalities. I had routine ultrasounds which were apparently normal. I actually had repeat ultrasound imaging of the outflow tracts of the heart at 22 weeks. Not because anything was thought to be abnormal, but just because she was moving so much at the 20 week scan, there was some difficulty in actually getting the views they needed. No one suspected a cardiac problem at any point.
In a sense, I believe learning of Angeline's heart defect will give us some peace. First of all, I have decided that nothing is worse than knowing nothing. In more than half the cases of stillbirth in the US, families never learn why their baby died. Not knowing is such a terrible haunting experience. The pain of thinking that your normal, healthy baby was lost for unknown reasons is excruciating. This past month I have suffered with the belief that our healthy girl was lost. It appears that our case will be one where we are afforded the opportunity for a sense of closure as regards the cause of her death.
This finding presents the possibility that Angeline's loss before birth was the lesser of two evils. If she were to have been born with a severe heart defect, she may have been subjected to surgeries and invasive procedures as an infant, maybe to survive, but maybe not. What would have been the quality of her life? It would have been infinitely harder to watch my infant girl suffer and die after trying to fix her broken heart...
So strange... Of all the things I was worried about with my pregnancy, this wasn't one of them. I was very anxious about a first trimester loss. I was a little worried about genetic problems such as Down's Syndrome. As time went on, I worried about the possibility of preterm labor - of course, by the time I was almost 31 weeks I felt I was almost in the clear. A few more weeks and she would probably do just fine, even if I went into labor early. It never even occurred to me to worry about congenital heart disease. I actually have a friend whose baby was born with Tetralogy of Fallot, and thanks be to God, did very well with his repair surgeries and is now thriving. How unlikely it would be for my baby to have a congenital heart defect!
This just goes to demonstrate something my mother and I have said many times: it just doesn't make much sense to worry, because it is not the things that you worry about, but the things that you least expect that come up and really take you down. I have experienced this and seen this time and time again.
To know that little Angeline's heart had not formed properly at a very early stage of development reinforces the fact that every life is a complex and miraculous victory. The development of a healthy baby is absolutely nothing short of a miracle. In Angeline's case, I believe that she hung on as long as she could. In doing so, she touched so very many lives here on earth.
I will close with I lovely sentiment from the website of Now I Lay Me Down To Sleep:
"There is no foot too small that it cannot leave an imprint on this world."
Sunday, January 23, 2011
Letting go
Twice this week I was asked the same question by two different people, "Where are you with God on this?"
Sometimes a tragedy can result in loss of faith, or doubt in one's beliefs. Alternatively, one can turn to religion for comfort. In my case, I think I have experienced a little of both, and also a third phenomenon: coming to the inevitable conclusion that we have little to no control over our path in life and making the choice to resign ourselves to that relative helplessness. So called "letting go." Whether you want to think of this as God's plan ("let go and let God"), succumbing to fate / destiny or random chance, the bottom line is, try as we might, we don't have much control over the course of our existence. At times, it is hard to remember that it works both ways - that is to say, we neither have control over what we perceive as good, nor what we believe to be bad experiences in our lives. While on some level, I am angry and upset that my child was taken away from me, I am also grateful that I have been blessed with the ability to conceive and carry a child at all, something that many couples struggle with. I am fortunate that I found a partner that I want to raise a child with. I am appreciative for the time I had to nurture my daughter, to bond with her. My feelings remind me of a popular Christian song, "Blessed Be His Name," in which the lyrics say, "He gives and takes away..." Even if you do not accept God as being in control of your life, the truth is you had no control over the circumstances you were born into, nor most of the things that led you to your current position in life. Certainly, you did not choose the parents you were born to, the opportunities you were given as a child, etc. Not to mention, so many chance encounters and occurrences along the way to reaching your current place. Some of them good, some of them bad. In my own case, I can think of many seemingly random, chance events without which I never would have carried Angeline at all. This is not to say that we have no responsibility for where we are, or that our actions cannot alter our course in some ways. My point is that there are many circumstances beyond our control that have significant bearing on our course.
In answer to the question, "Where are you with God on this?" I have answer that I don't know why God has given us the pain of this loss to bear. I am not sure why we are now heading down this new path that is so much different than the one we expected. I hope that somehow my little Angeline has been spared from pain and suffering, I hope that she is in a good, peaceful place now. I hope that her loss, that has touched so many people, brings all of us new respect for the sanctity and the miracle of life, as well as appreciation for so many blessing that have been bestowed on us. I hope that this difficult experience changes us in ways that are positive - to become more loving, more compassionate individuals. Though we did not choose this experience, it is now a part of us.
Sometimes a tragedy can result in loss of faith, or doubt in one's beliefs. Alternatively, one can turn to religion for comfort. In my case, I think I have experienced a little of both, and also a third phenomenon: coming to the inevitable conclusion that we have little to no control over our path in life and making the choice to resign ourselves to that relative helplessness. So called "letting go." Whether you want to think of this as God's plan ("let go and let God"), succumbing to fate / destiny or random chance, the bottom line is, try as we might, we don't have much control over the course of our existence. At times, it is hard to remember that it works both ways - that is to say, we neither have control over what we perceive as good, nor what we believe to be bad experiences in our lives. While on some level, I am angry and upset that my child was taken away from me, I am also grateful that I have been blessed with the ability to conceive and carry a child at all, something that many couples struggle with. I am fortunate that I found a partner that I want to raise a child with. I am appreciative for the time I had to nurture my daughter, to bond with her. My feelings remind me of a popular Christian song, "Blessed Be His Name," in which the lyrics say, "He gives and takes away..." Even if you do not accept God as being in control of your life, the truth is you had no control over the circumstances you were born into, nor most of the things that led you to your current position in life. Certainly, you did not choose the parents you were born to, the opportunities you were given as a child, etc. Not to mention, so many chance encounters and occurrences along the way to reaching your current place. Some of them good, some of them bad. In my own case, I can think of many seemingly random, chance events without which I never would have carried Angeline at all. This is not to say that we have no responsibility for where we are, or that our actions cannot alter our course in some ways. My point is that there are many circumstances beyond our control that have significant bearing on our course.
In answer to the question, "Where are you with God on this?" I have answer that I don't know why God has given us the pain of this loss to bear. I am not sure why we are now heading down this new path that is so much different than the one we expected. I hope that somehow my little Angeline has been spared from pain and suffering, I hope that she is in a good, peaceful place now. I hope that her loss, that has touched so many people, brings all of us new respect for the sanctity and the miracle of life, as well as appreciation for so many blessing that have been bestowed on us. I hope that this difficult experience changes us in ways that are positive - to become more loving, more compassionate individuals. Though we did not choose this experience, it is now a part of us.
Friday, January 21, 2011
An interesting week...
The third week of January 2011...
First of all, I went back to work this week. I stayed home for roughly two weeks after delivering Angeline. The physical recovery from delivery was not too bad. For two weeks I devoted myself to grieving for the loss of our daughter, reading books on the topic, educating myself on potential causes of this tragedy, reading the stories of other women, spending time with my immediate family and a few close friends. I let myself be completely miserable sometimes, and to sleep as much as I needed to. The fog started to clear. I realized that I could literally think about this all day every day if I allowed myself to. For me, it seemed right to try to start to get back to my usual routines. So, I returned to work. The first day, I felt pretty good. The second day, I cried on the way home. Ups and downs are to be expected, I think. I am so fortunate to work with a wonderful group of people, who have been incredibly supportive and sympathetic. Even those I have not been close with have simply approached me, saying, "I'm so sorry, we love you," and hugged me, which has meant so much to me. It is just so hard to keep my head up and keep smiling, though.
Mid-week I started to become slightly more anxious about the results of Angeline's autopsy. Although her body was released to us the first week of January, the pathologist has not given any report to my obstetrician as of yet. We had hoped to have a full report early this week. We have heard absolutely nothing, and the pathologist has been quite difficult to contact, from what I understand. On Thursday, the staff at my OB's office was finally able get though to the pathologist's office and speak to one of his staff. It seems that the results are in progress, but may take up to sixty days for a full report. Can you imagine? Sixty days to hear why your baby died. To me, this seems like a very long time for a bereaved family to wait to hear any explanation. I am trying my best to be patient.
Today, I had my hair done. At times when you feel absolutely horrible on the inside, sometimes it helps to look good on the outside at least! Not to mention that any good hair stylist is a great listener and part psychologist. In my case, I also have a stylist who is deeply religious. So, it was a good experience all around.
For the time being, I am going to try to go easy on myself. I am not going to hold myself to my usual standards for efficiency and busyness right now. I am going to relax over the weekend, get rest, read, spend quality time with those close to me.
First of all, I went back to work this week. I stayed home for roughly two weeks after delivering Angeline. The physical recovery from delivery was not too bad. For two weeks I devoted myself to grieving for the loss of our daughter, reading books on the topic, educating myself on potential causes of this tragedy, reading the stories of other women, spending time with my immediate family and a few close friends. I let myself be completely miserable sometimes, and to sleep as much as I needed to. The fog started to clear. I realized that I could literally think about this all day every day if I allowed myself to. For me, it seemed right to try to start to get back to my usual routines. So, I returned to work. The first day, I felt pretty good. The second day, I cried on the way home. Ups and downs are to be expected, I think. I am so fortunate to work with a wonderful group of people, who have been incredibly supportive and sympathetic. Even those I have not been close with have simply approached me, saying, "I'm so sorry, we love you," and hugged me, which has meant so much to me. It is just so hard to keep my head up and keep smiling, though.
Mid-week I started to become slightly more anxious about the results of Angeline's autopsy. Although her body was released to us the first week of January, the pathologist has not given any report to my obstetrician as of yet. We had hoped to have a full report early this week. We have heard absolutely nothing, and the pathologist has been quite difficult to contact, from what I understand. On Thursday, the staff at my OB's office was finally able get though to the pathologist's office and speak to one of his staff. It seems that the results are in progress, but may take up to sixty days for a full report. Can you imagine? Sixty days to hear why your baby died. To me, this seems like a very long time for a bereaved family to wait to hear any explanation. I am trying my best to be patient.
Today, I had my hair done. At times when you feel absolutely horrible on the inside, sometimes it helps to look good on the outside at least! Not to mention that any good hair stylist is a great listener and part psychologist. In my case, I also have a stylist who is deeply religious. So, it was a good experience all around.
For the time being, I am going to try to go easy on myself. I am not going to hold myself to my usual standards for efficiency and busyness right now. I am going to relax over the weekend, get rest, read, spend quality time with those close to me.
Sunday, January 16, 2011
Anger and frustration
Well, it seems like I am experiencing a little anger, after all. Not anger at any one individual. I am becoming increasingly angry about how the issue of pregancy loss, both miscarriage and stillbirth, seems to be neglected and devalued by our society at large, including the medical profession. I am wondering just how many babies have to die, and how many families have to endure untold pain and suffering, before due attention is paid to this issue. In a society of our wealth and resources, you would think that a little more could be directed at saving the lives of our unborn children and protecting the health of pregnant women. In the past few weeks, I have learned more than I ever wanted to know about these issues. I have been astounded to learn how common certain disorders that may contribute to pregnancy loss are. In particular, I have to wonder why women aren't screened for some of these risk factors preemptively. How much could it cost? I had to lose one child in an early miscarriage, and lose my unborn daughter at 31 weeks. This earned me an evaluation for risk factors for pregnancy loss. Isn't that too high a price to pay?! I now have to wonder if my daughter's death could have been prevented with more extensive screening for these risk factors.
I recently learned of a website called "Faces of Loss, Faces of Hope." See their link on the right side. The women featured on this website share their stories to raise awareness of issues related to miscarriage and infant loss. I give these mothers so much credit for sharing their private heartbreak in a public forum. Other women, and men too, need to hear about these issues, which are all too common. Please consider visiting the website and reading some of the stories.
In spite of what I believe to be legitimate anger and frustration, I constantly remind myself that nothing can bring Angeline back. Time is passing. It has been more than two weeks since I held her and said goodbye. We received her ashes and brought her home. The prevailing wisdom among many of those around me seems to be that it will help me to get my mind off of this a little. I have tried following my own advice from my last post. We have gotten out of the house now and then, tried to distract ourselves in various ways. I still feel that I could think about what has happened every minute of the day, but I know this won't change anything. It is time to try to pick up the pieces and start putting my life back together.
I recently learned of a website called "Faces of Loss, Faces of Hope." See their link on the right side. The women featured on this website share their stories to raise awareness of issues related to miscarriage and infant loss. I give these mothers so much credit for sharing their private heartbreak in a public forum. Other women, and men too, need to hear about these issues, which are all too common. Please consider visiting the website and reading some of the stories.
In spite of what I believe to be legitimate anger and frustration, I constantly remind myself that nothing can bring Angeline back. Time is passing. It has been more than two weeks since I held her and said goodbye. We received her ashes and brought her home. The prevailing wisdom among many of those around me seems to be that it will help me to get my mind off of this a little. I have tried following my own advice from my last post. We have gotten out of the house now and then, tried to distract ourselves in various ways. I still feel that I could think about what has happened every minute of the day, but I know this won't change anything. It is time to try to pick up the pieces and start putting my life back together.
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