anr0014
03-12-2007, 02:57 PM
The Latest Update 36 weeks
We went in last week to our doctor's appointment and we have decided that Jake will be born on March 28th. Only 2 1/2 weeks away. We have had such a tremendous amount of support from everyone here and from our friends, family and church. Today our priest dedicated his entire homily to telling our story, hoping that it will be an inspiration. I find that it is very hard to hear that we are an inspiration to others, we chose to continue with our pregnancy and love our son, knowing we could not change the outcome, it was the best decision for us, but does not make us heroes. But it is so wonderful to have so much support. Last Wednesday, we met with our priest to plan Jake's funeral after he is born. The entire time I kept thinkning that I hope he cannot hear what we are saying. We plan to have our family with us for his birth. We hope that we can celebrate his short life and we hope to have as much time with him as possible, without him being in pain.
Please continue to pray for us as the next few weeks/months are going to be so difficult.
**Another Update**
Today's update - (2/21/2007) @ 34 weeks
We went today for our final ultrasound before Jake is born. To our surprise he turned and is no longer in a breech position!! Thank goodness... we prayed so hard that he would turn and we wouldn't have to put him through anything.
Now we are just waiting for his day to arrive. It is such a relief that he turned! Please keep us in your thoughts and prayers as the next few weeks will be quite difficult.
**Another Update**
Yesterday (1/22/2007) we went in for another ultrasound to see how Jake is doing. We can feel him kick and everything seems so normal, until you see the ultrasound. We also found out he is breech, so they are planning to induce me early so he will be smaller when he is born. I am so terrified, they mentioned there is a chance his head could get stuck. I pray they do not cause him any pain. I just want him to be able to rest peacefully and know that we love him and are trying our best to help him...
This is such a nightmare!
***Update***
I am now 29 weeks through our pregnancy and we charish each movement Jake makes. He is quite a kicker! He has really become a part of our family that we openly enjoy and speak of. The last few weeks have been hard, several people I know who are pregnant with me have been having baby showers and I struggle with questioning why they are having a shower while I plan for a funeral. Life is not fair.
We are working with a hospice counselor and doula to help us through this time.
I often turn to this website when I am having a bad day. It helps to know that each of you are out there.
I will keep everyone updated... My thoughts and prayers are with you all.***
Four weeks ago my husband and I went in for our 18 week ultrasound scan and thought we would find out the sex of our baby. Never did we imagine what would unfold that day. During the ultrasound we found out we were having a baby boy. We were so excited. Jacob is our first child and we both wanted a little boy. The ultrasound tech was taking a lot of measurements, but we were so excited we didnt realize how much time she was taking. She left the room and told us the doctor would be in to see us. He came in and asked if I had taken medication/other things that may have harmed our baby. I told him besides my prenatal vitamins I had not taken anything. He then started to tell us that our baby's arms and legs were measuring very small. They were about the length of a baby at 14 weeks. He told us that he suspected a form of dwarfism. At that time it seemed like the world had ended. We were both so upset. Our doctor sat there and held our hand as we cried. He referred us to a maternal fetal medicine specialist and they were able to see us the next morning.
We went to see the specialist the next morning. There they did a detailed ultrasound, amni and other blood work to be sent offsite. The doctor confirmed that the baby's arms and legs were very short, but he also said the baby had extra fingers and toes and small chest/ribs. He diagnosed our baby with Short Rib Polydactyly Syndrome, which is a lethal form of skeletal dysplasia. I have come to hate the word lethal! It was at that appointment that the doctor told us we needed to decide whether to continue with the pregnancy and he referred us to a genetic counselor.
We met with the genetic counselor the next week. All the while, this has been the hardest week of my life. At the meeting with the genetic counselor we were armed with a week's worth of internet research on this condition. We knew what we were up against. I decided to contact the specialist at Cedars Sinai in LA. They are the leading researcher for this condition and they were so helpful and supportive. They sent information to our genetic counselor and she helped us to see another specialist in the area.
The next week, the week of Thanksgiving, we were able to see another specialist. At that appointment the ultrasound tech and doctor spent about 5 hours with us going over all of the information. He showed us all the signs of Short Rib Polydactyly on the screen and answered a lot of our questions. Plus, he was able to copy the ultrasound to a cd so we cound send it to the specialist at Cedars Sinai. He confirmed the diagnosis of Short Rib Polydactyly Syndrome and again told us we needed to decide whether or not to continue with this pregnancy.
We sent the ultrasound images to the specialist at Cedars and the next day she confirmed the diagnosis. We kept saying that we would make our decision after the next doctor confirmed the diagnosis. Not so easy...
After that we met with our priest and he was so wonderful and supportive. He told us that he would support either decision. What a great source of support.
Our family also supported both decisions and after two counseling sessions we were able to make our decision and now we feel at peace.
We decided that we would enjoy Jabob's life, however short it was. He is always moving and I think he is trying to tell me that he is still here with us. We know we have a difficult 4 months ahead of us, but we have a lot of support. We know that we cannot change the final outcome, but we can enjoy our special son. Please keep Jacob Paul in your thoughts and prayers.
Thank you to everyone who put this support site together. We know we will want NILMDTS photographers there to document Jacob's life once he is born.
We went in last week to our doctor's appointment and we have decided that Jake will be born on March 28th. Only 2 1/2 weeks away. We have had such a tremendous amount of support from everyone here and from our friends, family and church. Today our priest dedicated his entire homily to telling our story, hoping that it will be an inspiration. I find that it is very hard to hear that we are an inspiration to others, we chose to continue with our pregnancy and love our son, knowing we could not change the outcome, it was the best decision for us, but does not make us heroes. But it is so wonderful to have so much support. Last Wednesday, we met with our priest to plan Jake's funeral after he is born. The entire time I kept thinkning that I hope he cannot hear what we are saying. We plan to have our family with us for his birth. We hope that we can celebrate his short life and we hope to have as much time with him as possible, without him being in pain.
Please continue to pray for us as the next few weeks/months are going to be so difficult.
**Another Update**
Today's update - (2/21/2007) @ 34 weeks
We went today for our final ultrasound before Jake is born. To our surprise he turned and is no longer in a breech position!! Thank goodness... we prayed so hard that he would turn and we wouldn't have to put him through anything.
Now we are just waiting for his day to arrive. It is such a relief that he turned! Please keep us in your thoughts and prayers as the next few weeks will be quite difficult.
**Another Update**
Yesterday (1/22/2007) we went in for another ultrasound to see how Jake is doing. We can feel him kick and everything seems so normal, until you see the ultrasound. We also found out he is breech, so they are planning to induce me early so he will be smaller when he is born. I am so terrified, they mentioned there is a chance his head could get stuck. I pray they do not cause him any pain. I just want him to be able to rest peacefully and know that we love him and are trying our best to help him...
This is such a nightmare!
***Update***
I am now 29 weeks through our pregnancy and we charish each movement Jake makes. He is quite a kicker! He has really become a part of our family that we openly enjoy and speak of. The last few weeks have been hard, several people I know who are pregnant with me have been having baby showers and I struggle with questioning why they are having a shower while I plan for a funeral. Life is not fair.
We are working with a hospice counselor and doula to help us through this time.
I often turn to this website when I am having a bad day. It helps to know that each of you are out there.
I will keep everyone updated... My thoughts and prayers are with you all.***
Four weeks ago my husband and I went in for our 18 week ultrasound scan and thought we would find out the sex of our baby. Never did we imagine what would unfold that day. During the ultrasound we found out we were having a baby boy. We were so excited. Jacob is our first child and we both wanted a little boy. The ultrasound tech was taking a lot of measurements, but we were so excited we didnt realize how much time she was taking. She left the room and told us the doctor would be in to see us. He came in and asked if I had taken medication/other things that may have harmed our baby. I told him besides my prenatal vitamins I had not taken anything. He then started to tell us that our baby's arms and legs were measuring very small. They were about the length of a baby at 14 weeks. He told us that he suspected a form of dwarfism. At that time it seemed like the world had ended. We were both so upset. Our doctor sat there and held our hand as we cried. He referred us to a maternal fetal medicine specialist and they were able to see us the next morning.
We went to see the specialist the next morning. There they did a detailed ultrasound, amni and other blood work to be sent offsite. The doctor confirmed that the baby's arms and legs were very short, but he also said the baby had extra fingers and toes and small chest/ribs. He diagnosed our baby with Short Rib Polydactyly Syndrome, which is a lethal form of skeletal dysplasia. I have come to hate the word lethal! It was at that appointment that the doctor told us we needed to decide whether to continue with the pregnancy and he referred us to a genetic counselor.
We met with the genetic counselor the next week. All the while, this has been the hardest week of my life. At the meeting with the genetic counselor we were armed with a week's worth of internet research on this condition. We knew what we were up against. I decided to contact the specialist at Cedars Sinai in LA. They are the leading researcher for this condition and they were so helpful and supportive. They sent information to our genetic counselor and she helped us to see another specialist in the area.
The next week, the week of Thanksgiving, we were able to see another specialist. At that appointment the ultrasound tech and doctor spent about 5 hours with us going over all of the information. He showed us all the signs of Short Rib Polydactyly on the screen and answered a lot of our questions. Plus, he was able to copy the ultrasound to a cd so we cound send it to the specialist at Cedars Sinai. He confirmed the diagnosis of Short Rib Polydactyly Syndrome and again told us we needed to decide whether or not to continue with this pregnancy.
We sent the ultrasound images to the specialist at Cedars and the next day she confirmed the diagnosis. We kept saying that we would make our decision after the next doctor confirmed the diagnosis. Not so easy...
After that we met with our priest and he was so wonderful and supportive. He told us that he would support either decision. What a great source of support.
Our family also supported both decisions and after two counseling sessions we were able to make our decision and now we feel at peace.
We decided that we would enjoy Jabob's life, however short it was. He is always moving and I think he is trying to tell me that he is still here with us. We know we have a difficult 4 months ahead of us, but we have a lot of support. We know that we cannot change the final outcome, but we can enjoy our special son. Please keep Jacob Paul in your thoughts and prayers.
Thank you to everyone who put this support site together. We know we will want NILMDTS photographers there to document Jacob's life once he is born.