We would like to show our appreciation for everyone's words of kindness and encouragement! We have a hard road ahead of us, but with God's strength and so much love from friends and family standing behind us we know we will make it through this difficult time. So many of your thoughts and comments have confirmed to us that we have made the right decision to continue with the pregnancy and to wait on God's timing to deliver David to us. We are doing our best to see the joy in what will be David's short time with us. We consider each day of our pregnancy a blessing and one step closer to what we hope for, a full term delivery. Thank you all for your support and especially your prayers for our family.
We send our love to you in return,
Matthew, Amy, Adalyn, and Baby David
Wednesday, November 16, 2011
Thursday, November 10, 2011
Our Beloved
Happy Day
After Adalyn was born it didn't take Matthew and I long to know that we wanted to add another baby to our family and we hoped that God willing they would be somewhat close in age. So, on June 2nd of 2011 we were ecstatic to find out that we would be welcoming a new addition to our growing family in February of 2012. Adalyn would be only 22 months older than her younger sibling. Just what we had hoped for, yay!
When we found out we were pregnant with Adalyn, our family and all our close friends were quickly informed and we made the official announcement on Facebook (cause that's what we do this day in age right?) as soon as we reached the end of the first trimester. With this pregnancy, for whatever reason, we decided to keep the special secret to ourselves for a little while. We decided to tell our family while on a trip to visit Matthew's parents and family in Montana this past summer when we were 8 weeks along and decided to share with my family via skype right before we left for the Montana vacation. We have shared the news with a few close friends and some of our neighbors here in Californa, because when you've got terrible morning sickness you just can't hide it. Other than that for whatever reason, until now, we've kept the news of our blessing to ourselves.
Girl or Boy?
One of the most exciting days of a pregnancy for most parents is the 20 week ultrasound. This of course is because we get to get a glimpse of our little one; their face, fingers, toes, and wonderful little beating heart are on display for us to see. In addition to laying eyes on your sweet babe you may get to find out if your baby will be a little girl or a little boy. For us, that day came on September 19th, a date with prior significance being three years prior Matthew graduated from Officer Candidate School in Rhode Island and was commissioned as a Naval Officer. That morning we were so excited! We dropped Adalyn off at our neighbors house to play with their sweet daughter and we were off to UCSD Medical Center in La Jolla.
The ultrasound started shortly after we arrived and we were delighted to lay eyes on our cutie. Throughout the ultrasound we enjoyed watching our babe dance around, but after a bit I thought the technician was focusing a lot of time on a few areas of the babies anatomy. But I shrugged it off and thought to myself that Adalyn's 20 week ultrasound took a long time too and she is perfect as can be so I shouldn't be worrying at all. Towards the end of the appointment the technician spent a few minutes trying to identify the gender and then announced that she wasn't able to tell. I remember thinking that she didn't try very hard, but figured that she had done this so many times before that she knew how to tell if a baby would cooperate or not. She went back to show the images to the doctor as is standard for all appointments and Matthew and I discussed the possible options for how we might be able to identify our babies gender. Looking back at the appointment I believe that the technician may have known the gender, but chose not to disclose it to us or didn't feel it was necessary to put forth any energy into determining it for us at that time.
The News
Shortly after the technician left the doctor came into our exam room to go over the results of sonogram. The doctor informed us that the baby had a number of deformities which included choroid plexus cysts, dextrocardia, omphalocele, single artery umbilical, clubbed feet, and was small for gestational age. We were devastated by this news and weren't even sure what to think, ask, or expect and the tears started to flowed easily. The doctor continued on with possible causes for these birth defects and in her opinion it looked like a chromosomal abnormality most likely being Trisomy 13 or 18. Then she said the worst words I have ever heard in my entire life, "trisomy 13 and 18 are considered not compatible with life." How could anyone say this to a mother and father about their baby? How could my baby be incompatible with life, I've been feeling the baby kick away for over a month already. This baby was definitely alive! As I layed on the table the doctor left us to take in the news together and I thought I would just die right there. The staff left Matt and I to ourselves for as long as needed. We then met with a genetic counselor, who didn't really seem to know very much about the suspect conditions and what would happen if we continued with the pregnancy, and a radiologist who advised us to have an amniocentesis preformed to confirm or rule out a trisomy diagnosis. We agreed that this was a good decision for us because it would allow us plenty of time to make the wide variety of decisions that would need to be made for this baby whether it had a Trisomy or had many unrelated birth anomalies. Some women have an amniocentesis just to make sure nothing is wrong with their baby and in that case I would say the procedure is at worst uncomfortable, but when you are having this procedure done to confirm a life-limiting diagnosis for your baby it is unbelievably horrific! I closed my eyes and did my best to mentally disappear from the present while Matt lovingly held my hand.
The Wait
We drove home from the hospital in dead silence. We were supposed to be giddy with joy of the news of a little brother or sister for Adalyn and instead we felt as if everything had been taken from us. I wanted to arrive home as soon as possible and to hug and kiss our dear Adalyn. We spent the rest of the day doing nothing. I was not allowed to do anything after the amniocentesis procedure for two days so Matt took the next day off of work to take care of me, Adalyn, the dog, and the house. He was wonderful!
At first I wanted to know more about what this possible diagnosis meant exactly for us, but I was too afraid to learn the truth about Trisomy babies and I was even more afraid that I might accidentally see a picture of a baby with a Trisomy. It seemed as though the staff at the hospital painted a picture of our baby being a mutant of sorts and I couldn't face the possibility of our beautiful baby looking anything other than that, a beautiful baby. I eventually saw pictures of trisomy babies and they are all gorgeous gifts from above!
There were a lot of tears shed and I am so thankful for the angel from heaven God sent to us, Adalyn. Her giggles, smiles, and innocence were exactly what I needed. The girl melted my heart as she oh so gently wiped my tears away as I have done for her in the past. As we started to get back to reality, we started researching what a Trisomy 18 diagnosis actually entailed. We learned that the majority of patients carrying a baby with Trisomy 18 choose to terminate the pregnancy. I suppose there are many different reasons for their decision and I chose to believe that these parents do it out of love for their baby and because they believe the pain will be over sooner. This definitely would not be an option for me and I prayed that Matthew would feel the same. I knew with such a huge decision that if we didn't agree it could have the potential to be harmful to our marriage. When it came down to it, we both knew that if the baby had a Trisomy we would see this baby through till God called him home to heaven.
A week after our ultrasound Matt was scheduled to go underway for a week's time with a ship stationed out of San Diego, so my mom came out to help me. A huge help since I was still so physically exhausted from the abundance of emotional distress. It turned out that Matt's boss decided that in light of our family's circumstances they would have Matt stay home.
The Results
We were informed that the amniocentesis results would take 10 to 14 days, but only a week later on September 26 I got the call from the genetics counselor while I sat in the car in the parking lot of the commissary. The good news is that God was blessing us with a son! The devastating news is that he indeed did have Trisomy 18. Although it was hard to hear the official confirmed diagnosis we had done plenty of research in the previous week's time and we were nearly 100% positive that with all the soft markers he had that it seemed unimaginable that he could have any other condition. It was good to have a hard and fast diagnosis, so we could start grieving and making arrangements for his future.
The Name
We decided that we needed to name the baby as soon as possible, but we were a little scared to start the brainstorming process because of the great difficultly we had in picking a name for Adalyn. One small prayer was answered and Matt and I very quickly decided on a name. Our son would be called David(Beloved) Jeremiah(God will set free).
The Facts
Trisomy 18 is a chromosomal abnormality in which one parent gives the baby an extra copy of the 18th chromosome resulting in the baby having 3 copies of the 18th chromosome instead of 2. The extra copy gives too much information and the babies have an abundance of anomalies and health problems. The most similar condition to Trisomy 18 is Trisomy 21, commonly known as Downs Syndrome. Many more babies with Trisomy 21 than Trisomy 18 are successfully carried to term because the 21st chromosome carries with it a significantly less amount of information.
Looking at the numbers can be a bit confusing because they are all over the place. It's difficult to know just how many babies with trisomy 18 are conceived because it is believed that chromosomal abnormalities cause a majority of first trimester miscarriages. Based on confirmed prenatal cases it is believed that 1 in 3000 babies have Trisomy 18 and only 1 in 6000-8000 live births are babies with Trisomy 18.
We feel very lucky that David is still with us at 27 weeks gestation and we hope that he will be one of the few babies with Trisomy 18 that makes it to term and that we will be able to hold him in our arms and gaze into his eyes. We do understand that 50% of babies with Trisomy 18 result in a stillbirth and the majority of the live births live a very short time (hours, days, weeks, a month) and only 5-10% of live births will make it to their first birthday, but we have hope that we will be one of the lucky families.
What We're Doing
These past two months have been a huge roller coaster of emotions and an absolute confusion about the pregnancy and what we are really hoping for. It is amazing how much your feelings and hopes change as you make your way through the grieving process. After we initially received the news we were devestated. We didn't want to lose our baby if he had Trisomy 18 or, out of my own selfishness, care for a baby with such severe birth defects. It just seemed too hard. Other people seemed to be able to take care of, love, and be so proud of their children with physical and mental handicaps, but how could I possibly be one of those people. I was afraid it would wear me down and encompass my whole life. I started to hope that maybe very soon the pregnancy would end in a miscarriage so that I would not have to struggle with the initial decision of continuing on with the pregnancy or ending it or have to make any of the hundreds of decisions needed if he were born alive.
I knew though that terminating the pregnancy would be something I could never go through with. It is not my place to decide when David's heart should stop beating. That was for God to decide and luckily for us, he already has a plan laid out for David.
It didn't take long for me to change my mind about how I felt about miscarrying. I now yearned for David to make it to term or close to it, no matter what the diagnosis, and for me to start labor on my own and peacefully deliver David into our loving arms even if he might only be with us for a few short moments. My hopes for the pregnancy are for David to be a live birth, for us to be able to deliver in the birthing center at UCSD Medical Center instead of the traditional labor/delivery unit, and for David to come home with us with the help of San Diego Hospice's perinatal program. It is a possibility, although not a likely one, that David could be with us for a year and maybe even into grade school age.
The uncertainty of exactly how Trisomy 18 will affect David after birth and his short life makes it difficult to make decisions about a lot of things. Will we need a carseat for him? Clothes? Diapers? Bottles? Blankets? All things I don't really want to spend time and money on if we won't need them, but also things we must have at the ready in case he does come home with us, even if it is only for a week.
It has been a very confusing time for us, you never expect to have to plan for the death of your children at the same time you are planing for their birth. We have decided that we will be chosing to provide comfort care for David after he is born and we wish to provide for him everything that he may need to be comfortable. His condition is too serious and it affects every cell in his body for any type of majoy surgery to really be able to extend his life with any type of quality. We have been very blessed to have a lot of support from midwife program at UCSD medical center and the San Diego Hospice. In the next few weeks we will be creating a birth plan for David with the input of a variety of specialized health care workers, meeting with a funeral director to make prior arrangements so they won't have to be done last minute if needed, meeting with counselors, and even setting up arrangements for volunteer photographers to capture family photos after David's birth. It is very hard to plan for the impending death of your child before he is even born, but we wish to be as prepared as possible so that all we have to do is make a few phone calls and everything will be taken care of for us and we may continue to grieve our loss without having to be distracted by details.
A Blessing
Matt and I have decided that little David is a blessing. We are going to enjoy every moment we have with him before and after he is born. He is a special gift from God. He may be so broken in the eyes of this world but we know that he is absolutely perfect and he was made wonderfully by God especially for our family! We are so thankful for him and we want share David with our family and friends. We have a difficult road ahead of us but we are so lucky to be David's parents. The way I see it he just might have the kind of life most of us desire to have. He'll never feel the pain, hurt, or disappoint that his world can hand out to us. Instead he will go straight from the comfort of my safe womb to the arms of God or from my womb to his families waiting arms while we love on him so much before God calls him home. David will only experience love.
Our Wishes
We have decided to share our story not because we want to be pitied by any means, but to reach out to those after us facing a pregnancy with a life-limiting diagnosis for their baby and for the support and love of those that love us. We want everyone to know that just like their children, David is very special to us and we feel that he deserves the same joy that any other healthy baby brings to a family. He is a very important part of our family and although he may not live long in this world he will forever be loved and remembered in our hearts.
After Adalyn was born it didn't take Matthew and I long to know that we wanted to add another baby to our family and we hoped that God willing they would be somewhat close in age. So, on June 2nd of 2011 we were ecstatic to find out that we would be welcoming a new addition to our growing family in February of 2012. Adalyn would be only 22 months older than her younger sibling. Just what we had hoped for, yay!
When we found out we were pregnant with Adalyn, our family and all our close friends were quickly informed and we made the official announcement on Facebook (cause that's what we do this day in age right?) as soon as we reached the end of the first trimester. With this pregnancy, for whatever reason, we decided to keep the special secret to ourselves for a little while. We decided to tell our family while on a trip to visit Matthew's parents and family in Montana this past summer when we were 8 weeks along and decided to share with my family via skype right before we left for the Montana vacation. We have shared the news with a few close friends and some of our neighbors here in Californa, because when you've got terrible morning sickness you just can't hide it. Other than that for whatever reason, until now, we've kept the news of our blessing to ourselves.
Girl or Boy?
One of the most exciting days of a pregnancy for most parents is the 20 week ultrasound. This of course is because we get to get a glimpse of our little one; their face, fingers, toes, and wonderful little beating heart are on display for us to see. In addition to laying eyes on your sweet babe you may get to find out if your baby will be a little girl or a little boy. For us, that day came on September 19th, a date with prior significance being three years prior Matthew graduated from Officer Candidate School in Rhode Island and was commissioned as a Naval Officer. That morning we were so excited! We dropped Adalyn off at our neighbors house to play with their sweet daughter and we were off to UCSD Medical Center in La Jolla.
The ultrasound started shortly after we arrived and we were delighted to lay eyes on our cutie. Throughout the ultrasound we enjoyed watching our babe dance around, but after a bit I thought the technician was focusing a lot of time on a few areas of the babies anatomy. But I shrugged it off and thought to myself that Adalyn's 20 week ultrasound took a long time too and she is perfect as can be so I shouldn't be worrying at all. Towards the end of the appointment the technician spent a few minutes trying to identify the gender and then announced that she wasn't able to tell. I remember thinking that she didn't try very hard, but figured that she had done this so many times before that she knew how to tell if a baby would cooperate or not. She went back to show the images to the doctor as is standard for all appointments and Matthew and I discussed the possible options for how we might be able to identify our babies gender. Looking back at the appointment I believe that the technician may have known the gender, but chose not to disclose it to us or didn't feel it was necessary to put forth any energy into determining it for us at that time.
The News
Shortly after the technician left the doctor came into our exam room to go over the results of sonogram. The doctor informed us that the baby had a number of deformities which included choroid plexus cysts, dextrocardia, omphalocele, single artery umbilical, clubbed feet, and was small for gestational age. We were devastated by this news and weren't even sure what to think, ask, or expect and the tears started to flowed easily. The doctor continued on with possible causes for these birth defects and in her opinion it looked like a chromosomal abnormality most likely being Trisomy 13 or 18. Then she said the worst words I have ever heard in my entire life, "trisomy 13 and 18 are considered not compatible with life." How could anyone say this to a mother and father about their baby? How could my baby be incompatible with life, I've been feeling the baby kick away for over a month already. This baby was definitely alive! As I layed on the table the doctor left us to take in the news together and I thought I would just die right there. The staff left Matt and I to ourselves for as long as needed. We then met with a genetic counselor, who didn't really seem to know very much about the suspect conditions and what would happen if we continued with the pregnancy, and a radiologist who advised us to have an amniocentesis preformed to confirm or rule out a trisomy diagnosis. We agreed that this was a good decision for us because it would allow us plenty of time to make the wide variety of decisions that would need to be made for this baby whether it had a Trisomy or had many unrelated birth anomalies. Some women have an amniocentesis just to make sure nothing is wrong with their baby and in that case I would say the procedure is at worst uncomfortable, but when you are having this procedure done to confirm a life-limiting diagnosis for your baby it is unbelievably horrific! I closed my eyes and did my best to mentally disappear from the present while Matt lovingly held my hand.
The Wait
We drove home from the hospital in dead silence. We were supposed to be giddy with joy of the news of a little brother or sister for Adalyn and instead we felt as if everything had been taken from us. I wanted to arrive home as soon as possible and to hug and kiss our dear Adalyn. We spent the rest of the day doing nothing. I was not allowed to do anything after the amniocentesis procedure for two days so Matt took the next day off of work to take care of me, Adalyn, the dog, and the house. He was wonderful!
At first I wanted to know more about what this possible diagnosis meant exactly for us, but I was too afraid to learn the truth about Trisomy babies and I was even more afraid that I might accidentally see a picture of a baby with a Trisomy. It seemed as though the staff at the hospital painted a picture of our baby being a mutant of sorts and I couldn't face the possibility of our beautiful baby looking anything other than that, a beautiful baby. I eventually saw pictures of trisomy babies and they are all gorgeous gifts from above!
There were a lot of tears shed and I am so thankful for the angel from heaven God sent to us, Adalyn. Her giggles, smiles, and innocence were exactly what I needed. The girl melted my heart as she oh so gently wiped my tears away as I have done for her in the past. As we started to get back to reality, we started researching what a Trisomy 18 diagnosis actually entailed. We learned that the majority of patients carrying a baby with Trisomy 18 choose to terminate the pregnancy. I suppose there are many different reasons for their decision and I chose to believe that these parents do it out of love for their baby and because they believe the pain will be over sooner. This definitely would not be an option for me and I prayed that Matthew would feel the same. I knew with such a huge decision that if we didn't agree it could have the potential to be harmful to our marriage. When it came down to it, we both knew that if the baby had a Trisomy we would see this baby through till God called him home to heaven.
A week after our ultrasound Matt was scheduled to go underway for a week's time with a ship stationed out of San Diego, so my mom came out to help me. A huge help since I was still so physically exhausted from the abundance of emotional distress. It turned out that Matt's boss decided that in light of our family's circumstances they would have Matt stay home.
The Results
We were informed that the amniocentesis results would take 10 to 14 days, but only a week later on September 26 I got the call from the genetics counselor while I sat in the car in the parking lot of the commissary. The good news is that God was blessing us with a son! The devastating news is that he indeed did have Trisomy 18. Although it was hard to hear the official confirmed diagnosis we had done plenty of research in the previous week's time and we were nearly 100% positive that with all the soft markers he had that it seemed unimaginable that he could have any other condition. It was good to have a hard and fast diagnosis, so we could start grieving and making arrangements for his future.
The Name
We decided that we needed to name the baby as soon as possible, but we were a little scared to start the brainstorming process because of the great difficultly we had in picking a name for Adalyn. One small prayer was answered and Matt and I very quickly decided on a name. Our son would be called David(Beloved) Jeremiah(God will set free).
The Facts
Trisomy 18 is a chromosomal abnormality in which one parent gives the baby an extra copy of the 18th chromosome resulting in the baby having 3 copies of the 18th chromosome instead of 2. The extra copy gives too much information and the babies have an abundance of anomalies and health problems. The most similar condition to Trisomy 18 is Trisomy 21, commonly known as Downs Syndrome. Many more babies with Trisomy 21 than Trisomy 18 are successfully carried to term because the 21st chromosome carries with it a significantly less amount of information.
Looking at the numbers can be a bit confusing because they are all over the place. It's difficult to know just how many babies with trisomy 18 are conceived because it is believed that chromosomal abnormalities cause a majority of first trimester miscarriages. Based on confirmed prenatal cases it is believed that 1 in 3000 babies have Trisomy 18 and only 1 in 6000-8000 live births are babies with Trisomy 18.
We feel very lucky that David is still with us at 27 weeks gestation and we hope that he will be one of the few babies with Trisomy 18 that makes it to term and that we will be able to hold him in our arms and gaze into his eyes. We do understand that 50% of babies with Trisomy 18 result in a stillbirth and the majority of the live births live a very short time (hours, days, weeks, a month) and only 5-10% of live births will make it to their first birthday, but we have hope that we will be one of the lucky families.
What We're Doing
These past two months have been a huge roller coaster of emotions and an absolute confusion about the pregnancy and what we are really hoping for. It is amazing how much your feelings and hopes change as you make your way through the grieving process. After we initially received the news we were devestated. We didn't want to lose our baby if he had Trisomy 18 or, out of my own selfishness, care for a baby with such severe birth defects. It just seemed too hard. Other people seemed to be able to take care of, love, and be so proud of their children with physical and mental handicaps, but how could I possibly be one of those people. I was afraid it would wear me down and encompass my whole life. I started to hope that maybe very soon the pregnancy would end in a miscarriage so that I would not have to struggle with the initial decision of continuing on with the pregnancy or ending it or have to make any of the hundreds of decisions needed if he were born alive.
I knew though that terminating the pregnancy would be something I could never go through with. It is not my place to decide when David's heart should stop beating. That was for God to decide and luckily for us, he already has a plan laid out for David.
It didn't take long for me to change my mind about how I felt about miscarrying. I now yearned for David to make it to term or close to it, no matter what the diagnosis, and for me to start labor on my own and peacefully deliver David into our loving arms even if he might only be with us for a few short moments. My hopes for the pregnancy are for David to be a live birth, for us to be able to deliver in the birthing center at UCSD Medical Center instead of the traditional labor/delivery unit, and for David to come home with us with the help of San Diego Hospice's perinatal program. It is a possibility, although not a likely one, that David could be with us for a year and maybe even into grade school age.
The uncertainty of exactly how Trisomy 18 will affect David after birth and his short life makes it difficult to make decisions about a lot of things. Will we need a carseat for him? Clothes? Diapers? Bottles? Blankets? All things I don't really want to spend time and money on if we won't need them, but also things we must have at the ready in case he does come home with us, even if it is only for a week.
It has been a very confusing time for us, you never expect to have to plan for the death of your children at the same time you are planing for their birth. We have decided that we will be chosing to provide comfort care for David after he is born and we wish to provide for him everything that he may need to be comfortable. His condition is too serious and it affects every cell in his body for any type of majoy surgery to really be able to extend his life with any type of quality. We have been very blessed to have a lot of support from midwife program at UCSD medical center and the San Diego Hospice. In the next few weeks we will be creating a birth plan for David with the input of a variety of specialized health care workers, meeting with a funeral director to make prior arrangements so they won't have to be done last minute if needed, meeting with counselors, and even setting up arrangements for volunteer photographers to capture family photos after David's birth. It is very hard to plan for the impending death of your child before he is even born, but we wish to be as prepared as possible so that all we have to do is make a few phone calls and everything will be taken care of for us and we may continue to grieve our loss without having to be distracted by details.
A Blessing
Matt and I have decided that little David is a blessing. We are going to enjoy every moment we have with him before and after he is born. He is a special gift from God. He may be so broken in the eyes of this world but we know that he is absolutely perfect and he was made wonderfully by God especially for our family! We are so thankful for him and we want share David with our family and friends. We have a difficult road ahead of us but we are so lucky to be David's parents. The way I see it he just might have the kind of life most of us desire to have. He'll never feel the pain, hurt, or disappoint that his world can hand out to us. Instead he will go straight from the comfort of my safe womb to the arms of God or from my womb to his families waiting arms while we love on him so much before God calls him home. David will only experience love.
Our Wishes
We have decided to share our story not because we want to be pitied by any means, but to reach out to those after us facing a pregnancy with a life-limiting diagnosis for their baby and for the support and love of those that love us. We want everyone to know that just like their children, David is very special to us and we feel that he deserves the same joy that any other healthy baby brings to a family. He is a very important part of our family and although he may not live long in this world he will forever be loved and remembered in our hearts.
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