This time last year I wrote a blog post about Thankfulness. I had just gotten a job, Jess was doing well in medical school, we were making great friends, God was providing for our needs, and things were cheerful in the Anderson household. In that blog I asked if our feelings of being thankful was merely due to our circumstances, or if it was really the product of a heart that was thankful for a loving God and His sacrifice. Well, that is certainly being tested this year.
I had to call in to work again today because I simply couldn't stop the tears this morning. Jess and I sat and he held me as I shed tears for my beautiful son and all the things I will never see him do. Tears from the pain of knowing I'll never see Jude smile. Tears from the pain of never knowing if he would have inherited his daddy's beautiful blue eyes and dimples. Tears from the pain of knowing he could never wear the cute little monster hat I crocheted for him because when he is born two of his entire body will probably fit in that hat. Tears that he'll never have a first word, first step, first day of school, first date, first kiss,.... probably not even a first breath. So many things he'll never do.... and tears for each one.
I WANT to be thankful this year. I want to be thankful for the time that we DO have with Jude. But I am struggling. We are both struggling. We will likely never understand completely why this has happened; why God allowed these circumstances to steal away our little boy. But we WANT to be thankful anyway. Does wanting to be thankful count for something?
There certainly are things that we are thankful for. We are intensely thankful for each other this year. We are intensely thankful for our family, both biological and spiritual. It may sound silly, but we are intensely thankful for our goofy pooch. But, I am certainly struggling with the verse 1 Thessalonians 5:18. "Be thankful in all circumstances, for this is God's will for you in Christ Jesus." I realize that this verse doesn't say to be thankful ABOUT all circumstances, but even being thankful IN our circumstances is a challenge. How to be thankful despite so much pain?
I wish I had answers. Fortunately, our God is a gracious God. THIS I am thankful for without reserve.
Please continue to pray for our family through the holiday weekend. We feel like we should be starting to feel better, but the waves of pain continue to crash over us intensely. This week has continued to be excruciating. We know that the pain will become manageable eventually, but it is not yet. There are so many things on our minds, and decisions that need to be made. Prayers for peace over the holiday are much needed.
A few updated prayer requests are:
- Pray for us as we begin to make decisions and try to get things in order for Jude's unpredictable arrival. (Things like burial vs. cremation, arranging a photographer for the hospital, finding micro-preemie clothes small enough for a 1 lb or less baby, whether or not to do maternity pictures, etc)
- Pray that God would give us supernatural wisdom as we face the balancing act of carrying Jude as long as my body will allow, while not jeopardizing my health and future children more than necessary.
- And as I said previously, prayer that the pain would start to become manageable. And that there would begin to be times of enjoying Jude in between the waves.
These as well as the requests listed in my previous two blogs.
Thank you all so much, it is an encouragement to us to see how many people are reading our blog. If even a fraction of you are praying for us faithfully then we know that we are being lifted up by an army of prayer warriors. Love you all, and have a Happy Thanksgiving,
Jenn
Wednesday, November 23, 2011
Sunday, November 20, 2011
Jude - Triploidy
Thanks everyone for your responses of support to my last blog. We have truly felt the arms of the body of Christ encircling us and enabling us to get through this time.
I will try to be brief since my last post was so long. We got the amniocentesis results back yesterday. Jude has a very rare chromosomal abnormality called Triploidy. That means that Jude has 3 of each chromosome instead of 2. Most babies conceived with this anomaly are miscarried very early on, but a rare few survive to term. At this point, there is about a 50% chance that I will carry Jude to term, or close to it. These babies are usually still-born, but can survive delivery for a short time, usually minutes to hours. With the condition that Jude's little body is in at this point it seems nearly impossibly that he could come into position for a natural delivery, so will have to be delivered by C-section if he grows much more.
This opens up new fears for us. Jess worries about the greater risk and more difficult recovery a C-section places me in. I fear grieving the final loss of Jude while recovering from major abdominal surgery. I also fear that if he is born alive that he will have gone to Jesus before I am stitched up and can hold him. Prayer for these fears would be greatly appreciated, along with all of the prayer requests mentioned in my previous blog.
One thing struck us this morning as we were reading through Psalms and praying together: God understands our pain. He also lost a son. And not only did He loose His son, but He knowingly and willingly sacrificed His son FOR US. It makes God's sacrifice that much more meaningful as we are experiencing the pain of loosing our own beautiful Jude.
Thank you God for your sacrifice for us. We understand now just how incredibly painful it must have been for your to turn your face. We also understand a little bit better the love you must have for us, exemplified by your sacrifice. Though it is difficult to comprehend right now, that you love us and want what is best for us, we trust that you do. Forgive us our unbelief, and assist us to trust you more and more each day of this journey. Thank you for your love.
I will try to be brief since my last post was so long. We got the amniocentesis results back yesterday. Jude has a very rare chromosomal abnormality called Triploidy. That means that Jude has 3 of each chromosome instead of 2. Most babies conceived with this anomaly are miscarried very early on, but a rare few survive to term. At this point, there is about a 50% chance that I will carry Jude to term, or close to it. These babies are usually still-born, but can survive delivery for a short time, usually minutes to hours. With the condition that Jude's little body is in at this point it seems nearly impossibly that he could come into position for a natural delivery, so will have to be delivered by C-section if he grows much more.
This opens up new fears for us. Jess worries about the greater risk and more difficult recovery a C-section places me in. I fear grieving the final loss of Jude while recovering from major abdominal surgery. I also fear that if he is born alive that he will have gone to Jesus before I am stitched up and can hold him. Prayer for these fears would be greatly appreciated, along with all of the prayer requests mentioned in my previous blog.
One thing struck us this morning as we were reading through Psalms and praying together: God understands our pain. He also lost a son. And not only did He loose His son, but He knowingly and willingly sacrificed His son FOR US. It makes God's sacrifice that much more meaningful as we are experiencing the pain of loosing our own beautiful Jude.
Thank you God for your sacrifice for us. We understand now just how incredibly painful it must have been for your to turn your face. We also understand a little bit better the love you must have for us, exemplified by your sacrifice. Though it is difficult to comprehend right now, that you love us and want what is best for us, we trust that you do. Forgive us our unbelief, and assist us to trust you more and more each day of this journey. Thank you for your love.
Friday, November 18, 2011
broken world = broken lives
Some of you may know the events of the last week and a half in our lives. It has been a painful rollercoaster, and there is no immediate end in sight.
The truths that we are clinging to:
God IS good
He loves us
He loves Jude
He is hurting with us right now
He is the great physician
He never planned for this to happen, it is the consequence of living in a broken world
There is nothing we could have done to avoid our situation (no guilt allowed)
There is happiness and life for our family beyond this time of pain
God has a plan to use this for His glory
We have been so blessed by our dear family, friends, and church family. We literally could not have made it through this hellish time without the prayers that have been sent up for us. There have been and will continue to be many tears and much sorrow, but our ability to get through the last few days can only be attributed to your prayers and we are deeply grateful.
For those that don't know our situation:
Last week we had our routine anatomy scan for Jude. We scheduled it on my birthday (11/08) thinking that it would be a fun time of enjoying our beautiful baby boy. Throughout the ultrasound the tech was very quiet, and simply stated that she was concerned about his growth. At that point we only knew that he was lagging in growth, and that his abdominal circumference was VERY behind. But we were trusting that Jude was ok, and just growing at his own pace. It was a restless week between appointments, but I was feeling him move a kick constantly, and Jess even felt him move for the first time, so we were able to cling to some peace.
Tuesday (11/15) we saw the perinatologist (mom-baby complications specialist). On the ultrasound at that visit they clearly saw that Jude has at least 3 clubbed and contractured limbs, he's lagging even furthur in growth (less than the 3rd percentile), has an underdeveloped lower jaw bone, and what appears to be an enlarged and 2-3 chambered heart. In short, his tiny little body is very very broken. Our very kind doctor sat us down at that point and explained the most likely diagnoses. Top on the list is a Chromosomal disorder, and most likely of those is Trisomy 13 or 18. Both of these are fatal disorders. Next on the list is a rare genetic disorder called Arthrogryposis. Children with Arthrogryposis can live, but have a short lifespan full of surgeries, wheelchairs, and much physical pain. The doctor soon mentioned the possibility of terminating the pregnancy, which we simply said is not an option, and that anytime we get with our little guy is a blessing, even if we never meet face to face. The words came out of our mouths easily, but the full implications had not hit us yet, and small realizations of impossible hopes and dreams will continue to gut-punch us over the next few weeks and months.
Yesterday (11/17) I had an amniocentesis. At first we struggled with whether or not this was the best decision for Jude because of the significant risk for pre-term labor and miscarriage. It is difficult to make big decisions with a clear mind when your entire world was just flipped upside-down. Our doctor explained that having a more clear idea of what is causing Jude's body to break would help make important decisions in the future about whether or not they need to be prepared to treat him after birth, or if it would just be inflicting unnecessary pain on him. It will also determine where I deliver. If his condition offers some hope for survival they will have me deliver at The Children's Hospital in Denver. This is something that University Hospital and Children's Hospital occasionally make special arrangements for in order to rush a baby immediately to surgery and give them the best chances possible.
The amnio went fine. It's not a pleasant procedure by any means (they enter the uterus with an aspiration needle through the abdominal wall to retrieve amniotic fluid to test), especially as they don't use any anesthetic, but the knowledge of what they are doing and the risk that it carries is much worse that the procedure itself. If in two weeks I haven't gone into pre-term labor, then the risks from the amnio will be past. We should get some preliminary results for the more common chromosomal abnormalities (relatively speaking) by Sat (11/19) or Sun (11/20). The complete results for other even more rare chromosomal abnormalities will come back in about 10 days, so next weekend.
At this point Jess and I are resigning ourselves to the idea that if we do have time with Jude after his birth, it will be very short and it is highly unlikely that we will ever be able to bring him home. It is easier for us to believe that he will be home with Jesus before he can come home with us, simply because it would be much too painful to continue accumulating baby stuff and prepare for a homecoming on such a small chance of it happening. We do believe in a Healer God, however hanging on to hope for a future with Jude right now would make coping with our reality simply impossible.
The people in our lives have rallied around us and supported us beyond what we could have imagined. Though feeling so loved brings out tears, it does help enormously. There is an army praying for us, and we truly believe that those prayers are what has carried us through the last few tumultuous days, and they are the only thing that will carry us through the coming weeks, months, and years. Some specific prayer requests you can lift up for us are:
- For Jess as he is back in school and seeing people that know about the pregnancy, but not our current circumstances.
- For Jess as he is studying in the following days and weeks, that he will be able to concentrate and continue to be successful at school.
- That Jess' professors will offer him grace in his work as we continue to struggle through the following months.
- For me as I go back to work next week, that God would guide me to be gracious in explaining our new story (especially for interactions with the other pregnant girl at work, who I've talked "pregnancy talk" with.)
- That my boss would be understanding of some limitations I may have in my regular tasks, and help reassign some of my more difficult clients.
- That I would be able to have an extra measure of grace and compassion on the families that I work with and their children. And that the difficult family situations I work with would not trigger emotions of anger, jealousy, or sorrow.
- That our doctors would continue to show great compassion and have supernatural wisdom about our situation. That they would be able to give us "enough" information to make decisions but not too much to swallow. Also that they would help us tread the fine line of being parents but also sometimes having too much knowledge from being healthcare professionals.
- That we would somehow be able to continue to enjoy this time of pregnancy and carrying Jude. That I would feel love and joy instead of sorrow when I feel him move and kick.
- That God would give us guidance in how to manage the next four months of pregnancy and "having" Jude in our lives, while knowing what is on the horizon for us all as a family.
- That Jess and I would be able to continue to love and support each other as needed through this difficult time.
- Prayer for our emotional and mental health in the future as we cope with a difficult and confusing situation.
- Thanksgiving that God has provided us with such an amazing support system. Thanksgiving for the Body of Christ in action.
- Thanksgiving for our immediate families and their understanding and love. Thanksgiving that my mom was able to come be with us this week.
- Thanksgiving for the time that we DO have with Jude; no matter how short or long it is.
- Thanksgiving for the strong marriage that God has blessed us with, and our ability so far to support each other just as we each have needed.
- Thanksgiving that we have relationships with a God that loves us and wants good for us.
- Thanksgiving for the knowledge that God WILL use this for good, and that our pain will not be fruitless.
I could go on for miles with prayer requests, but these are some that are at the front of my mind right now. God knows what we need, and will grant us with the strength to take each day as it comes.
Thanks for reading and supporting us in prayer. There are a few things that we would like to ask of you in the coming days. These requests may change as time goes on and we will update you as they do, but for right now this is how you can best support us:
We crave your prayers, and the knowledge that you are praying. We would love to hear from you that we are in your thoughts, but NOT in a public forum. Private Facebook messages of encouragement are welcome and helpful, but PLEASE nothing on our public walls. As we begin to re-enter our "real lives" and interact with you all, we can speak about our situation with you in private arenas, we will accept hugs and words of encouragement, but please only in private. Our emotions are too raw to interact this way with others around. We can't handle any extra emotion triggers in public. We love our church family dearly, but when we come back to church again is a few weeks, please, as best you can, go about "business as usual." It may sound strange but it is too emotionally charged to be loved on in public. We believe that at this time we will be able to cope best if people pray and love on us in one-on-one private situations only so that we are not constant blubbering messes in front of large groups of people. As odd as it may sound, especially as I continue to look more and more pregnant, you can support us best by ignoring my pregnant state in public. Again, in private, you are welcome to be more personal, however around others we can't emotionally stay strong with frequent comments about my pregnancy.
We love you all and know that we are loved in return. Thank-you for reading this, sorry it's so long but the writing of it has been therapeutic for me. Please continue to pray for us, as we have a very long road ahead.
Thank you again for your support and sensitivity to our requests.
Jenn
The truths that we are clinging to:
God IS good
He loves us
He loves Jude
He is hurting with us right now
He is the great physician
He never planned for this to happen, it is the consequence of living in a broken world
There is nothing we could have done to avoid our situation (no guilt allowed)
There is happiness and life for our family beyond this time of pain
God has a plan to use this for His glory
We have been so blessed by our dear family, friends, and church family. We literally could not have made it through this hellish time without the prayers that have been sent up for us. There have been and will continue to be many tears and much sorrow, but our ability to get through the last few days can only be attributed to your prayers and we are deeply grateful.
For those that don't know our situation:
Last week we had our routine anatomy scan for Jude. We scheduled it on my birthday (11/08) thinking that it would be a fun time of enjoying our beautiful baby boy. Throughout the ultrasound the tech was very quiet, and simply stated that she was concerned about his growth. At that point we only knew that he was lagging in growth, and that his abdominal circumference was VERY behind. But we were trusting that Jude was ok, and just growing at his own pace. It was a restless week between appointments, but I was feeling him move a kick constantly, and Jess even felt him move for the first time, so we were able to cling to some peace.
Tuesday (11/15) we saw the perinatologist (mom-baby complications specialist). On the ultrasound at that visit they clearly saw that Jude has at least 3 clubbed and contractured limbs, he's lagging even furthur in growth (less than the 3rd percentile), has an underdeveloped lower jaw bone, and what appears to be an enlarged and 2-3 chambered heart. In short, his tiny little body is very very broken. Our very kind doctor sat us down at that point and explained the most likely diagnoses. Top on the list is a Chromosomal disorder, and most likely of those is Trisomy 13 or 18. Both of these are fatal disorders. Next on the list is a rare genetic disorder called Arthrogryposis. Children with Arthrogryposis can live, but have a short lifespan full of surgeries, wheelchairs, and much physical pain. The doctor soon mentioned the possibility of terminating the pregnancy, which we simply said is not an option, and that anytime we get with our little guy is a blessing, even if we never meet face to face. The words came out of our mouths easily, but the full implications had not hit us yet, and small realizations of impossible hopes and dreams will continue to gut-punch us over the next few weeks and months.
Yesterday (11/17) I had an amniocentesis. At first we struggled with whether or not this was the best decision for Jude because of the significant risk for pre-term labor and miscarriage. It is difficult to make big decisions with a clear mind when your entire world was just flipped upside-down. Our doctor explained that having a more clear idea of what is causing Jude's body to break would help make important decisions in the future about whether or not they need to be prepared to treat him after birth, or if it would just be inflicting unnecessary pain on him. It will also determine where I deliver. If his condition offers some hope for survival they will have me deliver at The Children's Hospital in Denver. This is something that University Hospital and Children's Hospital occasionally make special arrangements for in order to rush a baby immediately to surgery and give them the best chances possible.
The amnio went fine. It's not a pleasant procedure by any means (they enter the uterus with an aspiration needle through the abdominal wall to retrieve amniotic fluid to test), especially as they don't use any anesthetic, but the knowledge of what they are doing and the risk that it carries is much worse that the procedure itself. If in two weeks I haven't gone into pre-term labor, then the risks from the amnio will be past. We should get some preliminary results for the more common chromosomal abnormalities (relatively speaking) by Sat (11/19) or Sun (11/20). The complete results for other even more rare chromosomal abnormalities will come back in about 10 days, so next weekend.
At this point Jess and I are resigning ourselves to the idea that if we do have time with Jude after his birth, it will be very short and it is highly unlikely that we will ever be able to bring him home. It is easier for us to believe that he will be home with Jesus before he can come home with us, simply because it would be much too painful to continue accumulating baby stuff and prepare for a homecoming on such a small chance of it happening. We do believe in a Healer God, however hanging on to hope for a future with Jude right now would make coping with our reality simply impossible.
The people in our lives have rallied around us and supported us beyond what we could have imagined. Though feeling so loved brings out tears, it does help enormously. There is an army praying for us, and we truly believe that those prayers are what has carried us through the last few tumultuous days, and they are the only thing that will carry us through the coming weeks, months, and years. Some specific prayer requests you can lift up for us are:
- For Jess as he is back in school and seeing people that know about the pregnancy, but not our current circumstances.
- For Jess as he is studying in the following days and weeks, that he will be able to concentrate and continue to be successful at school.
- That Jess' professors will offer him grace in his work as we continue to struggle through the following months.
- For me as I go back to work next week, that God would guide me to be gracious in explaining our new story (especially for interactions with the other pregnant girl at work, who I've talked "pregnancy talk" with.)
- That my boss would be understanding of some limitations I may have in my regular tasks, and help reassign some of my more difficult clients.
- That I would be able to have an extra measure of grace and compassion on the families that I work with and their children. And that the difficult family situations I work with would not trigger emotions of anger, jealousy, or sorrow.
- That our doctors would continue to show great compassion and have supernatural wisdom about our situation. That they would be able to give us "enough" information to make decisions but not too much to swallow. Also that they would help us tread the fine line of being parents but also sometimes having too much knowledge from being healthcare professionals.
- That we would somehow be able to continue to enjoy this time of pregnancy and carrying Jude. That I would feel love and joy instead of sorrow when I feel him move and kick.
- That God would give us guidance in how to manage the next four months of pregnancy and "having" Jude in our lives, while knowing what is on the horizon for us all as a family.
- That Jess and I would be able to continue to love and support each other as needed through this difficult time.
- Prayer for our emotional and mental health in the future as we cope with a difficult and confusing situation.
- Thanksgiving that God has provided us with such an amazing support system. Thanksgiving for the Body of Christ in action.
- Thanksgiving for our immediate families and their understanding and love. Thanksgiving that my mom was able to come be with us this week.
- Thanksgiving for the time that we DO have with Jude; no matter how short or long it is.
- Thanksgiving for the strong marriage that God has blessed us with, and our ability so far to support each other just as we each have needed.
- Thanksgiving that we have relationships with a God that loves us and wants good for us.
- Thanksgiving for the knowledge that God WILL use this for good, and that our pain will not be fruitless.
I could go on for miles with prayer requests, but these are some that are at the front of my mind right now. God knows what we need, and will grant us with the strength to take each day as it comes.
Thanks for reading and supporting us in prayer. There are a few things that we would like to ask of you in the coming days. These requests may change as time goes on and we will update you as they do, but for right now this is how you can best support us:
We crave your prayers, and the knowledge that you are praying. We would love to hear from you that we are in your thoughts, but NOT in a public forum. Private Facebook messages of encouragement are welcome and helpful, but PLEASE nothing on our public walls. As we begin to re-enter our "real lives" and interact with you all, we can speak about our situation with you in private arenas, we will accept hugs and words of encouragement, but please only in private. Our emotions are too raw to interact this way with others around. We can't handle any extra emotion triggers in public. We love our church family dearly, but when we come back to church again is a few weeks, please, as best you can, go about "business as usual." It may sound strange but it is too emotionally charged to be loved on in public. We believe that at this time we will be able to cope best if people pray and love on us in one-on-one private situations only so that we are not constant blubbering messes in front of large groups of people. As odd as it may sound, especially as I continue to look more and more pregnant, you can support us best by ignoring my pregnant state in public. Again, in private, you are welcome to be more personal, however around others we can't emotionally stay strong with frequent comments about my pregnancy.
We love you all and know that we are loved in return. Thank-you for reading this, sorry it's so long but the writing of it has been therapeutic for me. Please continue to pray for us, as we have a very long road ahead.
Thank you again for your support and sensitivity to our requests.
Jenn
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