After a very tiring vacation in Dallas with my sister and nephew I am finally home and have some more news to give. Aside from the new head cold and ear aches, I finally got a call from Dr. G's office yesterday morning as we were preparing to go to the airport to fly home. They left a message about the results being in and they needed Skeet and I to have blood drawn. I decided that I didn't want to know until I could be with Skeet so I didn't call them back until this morning.
When I spoke to Dr. G he said that the genetic mutation they found looks like Thanatophoric Dysplasia, but it is something they have never seen before. The type of mutation they saw looks similar to the type of dysplasia that is lethal but they cannot tell us for sure if it is lethal or even if it is for sure Thanatophoric Dysplasia. They need Skeet and I to have blood drawn so that they can test to see if we are carriers or if it is a new mutation or a mistake. I guess that means more waiting for us. And I can still have hope that she may be okay.
She doesn't move much but I think that she is growing because my belly is getting a lot bigger. I do feel her move more when I am resting and she is still really low, but I enjoy every kick, punch and turn that I do feel. While in Dallas we went into Babies R Us to find gifts for friends and family that are expecting and I thought I would be okay but while looking for cards I lost it. I didn't realize how hard it would be to see all the clothing, bedding and toys and not be sad that I should be having fun and buying things to prepare for her arrival. I don't want to have a pessimistic attitude about it but I don't think that I can make all those purchases and have to look at them or take them back if things don't go the way we are hoping for. I may never have a shower for Avery or paint a nursery but I will keep hoping that it will happen someday soon. With only a little over 3 months left of this pregnancy I am starting to get scared about what will happen and if I will be able to handle it.
Thank you all again for your prayers, please continue to pray for Avery and I will keep you updated. God Bless.
Tuesday, August 28, 2007
Thursday, August 16, 2007
A Strong Heart
I guess these posts are becoming a weekly thing now. I just wanted to give everyone an update on Avery. We traveled to Salt Lake this week for the fetal echo cardiogram at Primary Children's Hospital. We arrived Tuesday night and our appointment was scheduled for Wednesday morning. My parents were kind enough to drive us up and back and it was so nice to be able to spend that time with them. I figured that the FECG would be like an ultrasound and I was right, that is exactly what it was. They brought little Avery's heart up on the screen and started doing all the needed measurements. It took so long I think I was on that table for over an hour but it was nice to see our little girl bouncing around on the screen. After the tech had finished all of her pictures the doctor (I forget his name) came in to discuss the results with us. He said that they had noticed a small hole in Avery's heart but was not concerned because these holes, called VSDs, are very common and usually close up by the time the baby is born. He mentioned her chest size and said it looked extremely small. He seemed to imply that there was very little room for her lungs to develop. This, of course, wasn't new news to us so we took his news about her heart as good news and left Salt Lake with one less thing to worry about.
That brings us to today, Thrusday August 16th. I had an appointment with Dr. Sanders this morning to discuss my last appointment with Dr. G and the FECG. Skeet had to work today so my sister came with me to the appointment for moral support! I think she believes she owes me because I was there for most of hers and for Ayden's birth!
Can I just say how great I think Dr. Sanders is. If he could be my doctor for everything I would love that! He immediately makes you feel comfortable and he talks to you like you are a close friend and he really listens when you talk. So anyway back to the appointment, he wants Skeet and I to start thinking about how we want our birth plan to go if the baby's diagnosis is lethal. Depending on what we want will determine where Avery will be born. If we are comfortable with them not trying to resuscitate her and to just offer support after delivery then we can have Dr. Sanders deliver here in Cedar. We also have to decide if we would like to hold her and be with her until she passes or if it will be too hard. I haven't discussed any of this with Skeet yet because we don't know anything for sure and I told Dr. Sanders that. My sister asked him if the baby would suffer at all after birth and he said she would. She will go into respiratory distress then failure and then into cardiac arrest. He said as my doctor he wanted to be up front with me and that from everything they have seen he doesn't think the results of this test are going to be good and he wants me to prepare myself. In saying that, he wanted us to be able to leave his office today with some answers but after having his nurses call about 50 different places we found out that the tests were sent to California and it would be another week before we can find out the results. The 30 minutes that we waited to hear this were awful. My sister and I both crying and I was praying over and over again for some good news. Well to me... no news is good news. Once again I felt relief when he said it would be another week. I am just going to keep praying that the tests are negative for the lethal types they tested for and that little Avery will keep growing and surprise us all.
On a happier note I received a care package from a very good friend today and was reminded how blessed I am to have so many people out there praying for Avery. I have been crying from the second I opened this package and want my friend to know that it is the most beautiful, touching gift I have ever received and I have no idea how to thank you! I cannot wait to share it with Skeet and with Avery. Thank you from the bottom of my heart a million times.
So next week I am scheduled for a 3D ultrasound on Monday but may cancel if Skeet cannot make it. I cannot wait to see our little girls face. Then, I have to decide if I want the test results before my trip to Dallas next week or if I want to wait until after I get back. I can't decide if it would just be better to know or if it will be better to just wait until I have some time to be at home and just let it all sink in. I will see Dr. G again on Sept 5th to measure Avery again. I think they will continue the monthly ultrasounds no matter what the tests show.
I thank my Father in Heaven every day for my family, Skeet's family, and our friends and the great support they are to us. I know this experience would be so much more difficult if it weren't for them. Avery is truly blessed to have such wonderful people pulling for her. Thank you again to everyone for your prayers. Please continue to pray for her and I will let you know more when I know more. In the mean time... God Bless.
That brings us to today, Thrusday August 16th. I had an appointment with Dr. Sanders this morning to discuss my last appointment with Dr. G and the FECG. Skeet had to work today so my sister came with me to the appointment for moral support! I think she believes she owes me because I was there for most of hers and for Ayden's birth!
Can I just say how great I think Dr. Sanders is. If he could be my doctor for everything I would love that! He immediately makes you feel comfortable and he talks to you like you are a close friend and he really listens when you talk. So anyway back to the appointment, he wants Skeet and I to start thinking about how we want our birth plan to go if the baby's diagnosis is lethal. Depending on what we want will determine where Avery will be born. If we are comfortable with them not trying to resuscitate her and to just offer support after delivery then we can have Dr. Sanders deliver here in Cedar. We also have to decide if we would like to hold her and be with her until she passes or if it will be too hard. I haven't discussed any of this with Skeet yet because we don't know anything for sure and I told Dr. Sanders that. My sister asked him if the baby would suffer at all after birth and he said she would. She will go into respiratory distress then failure and then into cardiac arrest. He said as my doctor he wanted to be up front with me and that from everything they have seen he doesn't think the results of this test are going to be good and he wants me to prepare myself. In saying that, he wanted us to be able to leave his office today with some answers but after having his nurses call about 50 different places we found out that the tests were sent to California and it would be another week before we can find out the results. The 30 minutes that we waited to hear this were awful. My sister and I both crying and I was praying over and over again for some good news. Well to me... no news is good news. Once again I felt relief when he said it would be another week. I am just going to keep praying that the tests are negative for the lethal types they tested for and that little Avery will keep growing and surprise us all.
On a happier note I received a care package from a very good friend today and was reminded how blessed I am to have so many people out there praying for Avery. I have been crying from the second I opened this package and want my friend to know that it is the most beautiful, touching gift I have ever received and I have no idea how to thank you! I cannot wait to share it with Skeet and with Avery. Thank you from the bottom of my heart a million times.
So next week I am scheduled for a 3D ultrasound on Monday but may cancel if Skeet cannot make it. I cannot wait to see our little girls face. Then, I have to decide if I want the test results before my trip to Dallas next week or if I want to wait until after I get back. I can't decide if it would just be better to know or if it will be better to just wait until I have some time to be at home and just let it all sink in. I will see Dr. G again on Sept 5th to measure Avery again. I think they will continue the monthly ultrasounds no matter what the tests show.
I thank my Father in Heaven every day for my family, Skeet's family, and our friends and the great support they are to us. I know this experience would be so much more difficult if it weren't for them. Avery is truly blessed to have such wonderful people pulling for her. Thank you again to everyone for your prayers. Please continue to pray for her and I will let you know more when I know more. In the mean time... God Bless.
Wednesday, August 8, 2007
Baby Avery
I will start off with the good news. Much to our surprise they confirmed at our appointment today that our baby is a girl. I was so convinced for the last 22 weeks that we were having a boy. But the amnio results don't lie... it is for sure a girl. I think hearing that made everything harder. Our way of thinking has now changed. Its not just our baby anymore, it's our daughter. Reality is so much closer now.... but still so far away.
The drive to St. George was quiet, my stomach was turning and I prayed over and over the whole way. When we parked the car and started for the door to the clinic I almost turned back to the car. I didn't think I could handle it. I was so scared of what we were going to find out, or not find out. Before today I thought that them not being able to tell us anything would be worse than getting the definite lethal diagnosis. I was asked to sign a few papers before we could see the doctor and as I was reading them over my stomach dropped. There was a section on the patient information sheet for the diagnosis and underneath it said Thantophoric dysplasia. From all my research I knew this to be a lethal type of skeletal dysplasia. I thought for sure they had the results... why else would they list it as a diagnosis. It took all my strength not to break down right then and there.
We were taken into a very large dark room to start an ultrasound. This time I watched every measurement and the u/s tech talked us through everything she was doing. It was so strange this time around because there were so many things that I had read on the internet and seen in photos, that I was now looking for and my baby looked so different to me. I found myself looking for club feet, bowed femurs, frontal bossing amoung other things. Her legs are still very small and have not grown much, if at all. We still could not see her fingers because her hands were in fists. Her heartbeat is still stong at 165. The tech didn't tell us much and when I asked questions she told me I would need to ask the doctor.
Finally, the doctor came in and gave us the results of the amnio, all the chromosone testing came back normal. No down syndrome or any of the T syndromes. There was a problem with the additional testing that they do for dwarfism, the first test they tried failed so the lab had to start over. This means that we won't know what type of Skeletal Dysplasia our little girl has for another 3 weeks. That had been my fear but now I am somewhat relieved. I get to have some time with my little girl before I find out for sure! Anyway, Dr. G did his own measurements and did say that her chest has grown which is a really good sign. I asked about the heart and whether or not it looked like there is room for the lungs to develop and he said that it looked like the heart was not taking up the whole chest cavity. He sounded very optimistic about her chest size which made me breath a huge sigh of relief. However, he is still very concerned about the length of her long bones and we did notice bowing of the femur. He said her head looked good, it was right on as far as size and did not seem to have any frontal bossing and was shaped perfectly. He couldn't tell us much about her hands and feet because of her positioning and she wasn't moving much. I think she was napping.
So our appointment was okay but not great. I am not as much of a wreck as I thought I would be. I am still worried about getting the rest of the test results but I am feeling hopeful. Dr. G never pressured us one way or the other when it came to our options as was completely supportive of our decision not to terminate. He said because we have the time we don't have to be in too much of a hurry to get the results. He wants us to come back in a month to measure the baby again. He also recommended that we speak to the local neonatal specialist and find out what our options are for delivery. He is confident that we will be able to deliver either way in St. George which is alot better than having to go to Salt Lake. I am sad that Dr. Sanders will not be able to deliver our baby but we have to do what is best for her.
It's so weird to think that I have done everything to make sure that this baby is healthy. I eat my fruits and veggies, I drink my milk and water, and I take my prenatal vitamins. I have also been staying away from deli meat, sprouts, hot dogs and caffine (for the most part). But there is nothing I can do to prevent this, it makes me feel so out of control. All I can do is pray that God will not give us more trials than we can handle. I have to say that I would not be able to get through this if it weren't for my amazing husband. He is my rock and I feel so blessed to have him in my life.
I want to thank all of you for your comments and your prayers. Please continue to pray for Avery, we appreciate every prayer. God Bless!
The drive to St. George was quiet, my stomach was turning and I prayed over and over the whole way. When we parked the car and started for the door to the clinic I almost turned back to the car. I didn't think I could handle it. I was so scared of what we were going to find out, or not find out. Before today I thought that them not being able to tell us anything would be worse than getting the definite lethal diagnosis. I was asked to sign a few papers before we could see the doctor and as I was reading them over my stomach dropped. There was a section on the patient information sheet for the diagnosis and underneath it said Thantophoric dysplasia. From all my research I knew this to be a lethal type of skeletal dysplasia. I thought for sure they had the results... why else would they list it as a diagnosis. It took all my strength not to break down right then and there.
We were taken into a very large dark room to start an ultrasound. This time I watched every measurement and the u/s tech talked us through everything she was doing. It was so strange this time around because there were so many things that I had read on the internet and seen in photos, that I was now looking for and my baby looked so different to me. I found myself looking for club feet, bowed femurs, frontal bossing amoung other things. Her legs are still very small and have not grown much, if at all. We still could not see her fingers because her hands were in fists. Her heartbeat is still stong at 165. The tech didn't tell us much and when I asked questions she told me I would need to ask the doctor.
Finally, the doctor came in and gave us the results of the amnio, all the chromosone testing came back normal. No down syndrome or any of the T syndromes. There was a problem with the additional testing that they do for dwarfism, the first test they tried failed so the lab had to start over. This means that we won't know what type of Skeletal Dysplasia our little girl has for another 3 weeks. That had been my fear but now I am somewhat relieved. I get to have some time with my little girl before I find out for sure! Anyway, Dr. G did his own measurements and did say that her chest has grown which is a really good sign. I asked about the heart and whether or not it looked like there is room for the lungs to develop and he said that it looked like the heart was not taking up the whole chest cavity. He sounded very optimistic about her chest size which made me breath a huge sigh of relief. However, he is still very concerned about the length of her long bones and we did notice bowing of the femur. He said her head looked good, it was right on as far as size and did not seem to have any frontal bossing and was shaped perfectly. He couldn't tell us much about her hands and feet because of her positioning and she wasn't moving much. I think she was napping.
So our appointment was okay but not great. I am not as much of a wreck as I thought I would be. I am still worried about getting the rest of the test results but I am feeling hopeful. Dr. G never pressured us one way or the other when it came to our options as was completely supportive of our decision not to terminate. He said because we have the time we don't have to be in too much of a hurry to get the results. He wants us to come back in a month to measure the baby again. He also recommended that we speak to the local neonatal specialist and find out what our options are for delivery. He is confident that we will be able to deliver either way in St. George which is alot better than having to go to Salt Lake. I am sad that Dr. Sanders will not be able to deliver our baby but we have to do what is best for her.
It's so weird to think that I have done everything to make sure that this baby is healthy. I eat my fruits and veggies, I drink my milk and water, and I take my prenatal vitamins. I have also been staying away from deli meat, sprouts, hot dogs and caffine (for the most part). But there is nothing I can do to prevent this, it makes me feel so out of control. All I can do is pray that God will not give us more trials than we can handle. I have to say that I would not be able to get through this if it weren't for my amazing husband. He is my rock and I feel so blessed to have him in my life.
I want to thank all of you for your comments and your prayers. Please continue to pray for Avery, we appreciate every prayer. God Bless!
Wednesday, August 1, 2007
How it all began
After being married for a little over a year we decided it was time to start trying for a family. I had had so many problems in the last few years with endometriosis and irregular cycles that I knew it wasn't going to be easy and saw a doctor right away for infertility. Dr. Sanders was great, he agreed that it probably wouldn't be easy and scheduled me for a series of tests and surgery to help with the endometriosis. After 2 years of chlomid and ovulation tests we were told that our next option would be to see a specialist in Las Vegas. We met with Dr. D not too long after that and got the ball rolling for In Vitro Fertilization. On March 17, 2007 we went in for the egg retrieval. 46 eggs were taken from my ovaries and 40 of them survived fertilization. After a week of incubating we still had 7 strong eggs and our transfer was scheduled for March 22nd. We watched as Dr. D inserted 2 blastocysts into my uterus on the ultrasound screen and silently I prayed that they would grab on and hold tight. The 5 remaining were frozen for future attempts. On April 2nd Dr. Sanders called me to tell me that my blood test had come back with a positive. After 2 1/2 years we were finally pregnant! I could hardly believe it! A few days later I had to pee on a stick just to see for myself!
I experienced all the blessings of the first trimester, the nausea, the heartburn, the sore chest, and boy was I tired! But I loved every minute of it. One Saturday in May my sister rushed me to the hospital, I was 11 weeks and was having extreme pain in my lower stomach. I was so scared but was told that if there was no blood I shouldn't worry. After some morophine and alot of water they did a transabdominal ultra sound and said the baby is fine. They gave me some antibiotics for a UTI then they were going to send me home. Luckily my OB sensed something else was wrong and ordered me to be monitored over night and a transvaginal ultrasound to be done later that evening. After taking one look at my 2nd ultrasound he started making arrangments for emergency surgery. I had what they call a heterotopic pregnancy which is where two embryos implant, one in the uterus and one elsewhere. In my case it was my left tube. (The chances of this happening are about 1% in IVF cases.) My tube had ruptured and I was bleeding internally. I was so scared for my baby but my OB assured me everything would be fine. I remember waking up from the surgery and the first thing out of my mouth was "is my baby okay?" and it was! He showed me the next morning on an ultrasound that the baby was fine... a little bean bouncing all over the place! After that I thought the worst had to be over and if we could survive that we could survive anything!
Jumping forward 8 weeks to our level II ultrasound, July 17, 2007 I am 19 weeks 3 days, we show up to our appointment VHS in hand. I have a feeling deep down that we are having a little boy but can't wait to see for sure. Unfortunately the bad news comes before we can even find out. Within minutes of starting the ultrasound the tech tells me there is something very wrong with the baby and proceeds to point out an extremely short femur bone and what looks like alot of fluid around the baby's brain. After that I was crying so hard I didn't see the rest of the ultrasound. She finished up her measurements and we talked to our OB who said that best case is the baby will be a dwarf, but he is going to look over the ultrasound and call us later that evening. After a long day of everyone crying and praying Dr. Sanders finally calls and says it looks worse than he thought and that the baby most likely has a lethal form of skeletal dysplasia that will not allow the baby to breath on its own after birth. We were crushed. Our little miracle, the baby we have waited so long for, may not live. He recommended that we see a Perintologist and would call us the next day with an appointment.
The next day we drove the 40 minutes to the Peri's office dreading what we would hear but hoping for good news. He confirmed right away that it is for sure skeletal dysplasia, the limbs were about 6 weeks behind the rest of the body. They measured every part of my baby and I couldn't watch. It was too hard to see those images, to become even more attached to this little being when I didn't know if I was ever going to be able to see it alive, or hold it in my arms. They did an amnio and mentioned something about a heart defect and the appointment was over. I was told to come back in 3 weeks to go over the results. We were also scheduled for a fetal echocardiogram in 4 weeks.
Which brings us to today. I am 21 weeks 4 days pregnant and dreading next Wednesday when we will find out the test results. I have been praying for my baby every day, as have my family and friends. The one thing that brings me peace is knowing that no matter what happens this will always be our baby, our first, our little miracle. We have decided that no matter what the test results show we are carrying this baby to term if possible. We want to give it any chance for life we can, even if it is only a few moments. Next week we will find out the gender of the baby and will give it a name. I am asking anyone who reads this to please remember our little one in your prayers. I will be back next week to post the results.
I experienced all the blessings of the first trimester, the nausea, the heartburn, the sore chest, and boy was I tired! But I loved every minute of it. One Saturday in May my sister rushed me to the hospital, I was 11 weeks and was having extreme pain in my lower stomach. I was so scared but was told that if there was no blood I shouldn't worry. After some morophine and alot of water they did a transabdominal ultra sound and said the baby is fine. They gave me some antibiotics for a UTI then they were going to send me home. Luckily my OB sensed something else was wrong and ordered me to be monitored over night and a transvaginal ultrasound to be done later that evening. After taking one look at my 2nd ultrasound he started making arrangments for emergency surgery. I had what they call a heterotopic pregnancy which is where two embryos implant, one in the uterus and one elsewhere. In my case it was my left tube. (The chances of this happening are about 1% in IVF cases.) My tube had ruptured and I was bleeding internally. I was so scared for my baby but my OB assured me everything would be fine. I remember waking up from the surgery and the first thing out of my mouth was "is my baby okay?" and it was! He showed me the next morning on an ultrasound that the baby was fine... a little bean bouncing all over the place! After that I thought the worst had to be over and if we could survive that we could survive anything!
Jumping forward 8 weeks to our level II ultrasound, July 17, 2007 I am 19 weeks 3 days, we show up to our appointment VHS in hand. I have a feeling deep down that we are having a little boy but can't wait to see for sure. Unfortunately the bad news comes before we can even find out. Within minutes of starting the ultrasound the tech tells me there is something very wrong with the baby and proceeds to point out an extremely short femur bone and what looks like alot of fluid around the baby's brain. After that I was crying so hard I didn't see the rest of the ultrasound. She finished up her measurements and we talked to our OB who said that best case is the baby will be a dwarf, but he is going to look over the ultrasound and call us later that evening. After a long day of everyone crying and praying Dr. Sanders finally calls and says it looks worse than he thought and that the baby most likely has a lethal form of skeletal dysplasia that will not allow the baby to breath on its own after birth. We were crushed. Our little miracle, the baby we have waited so long for, may not live. He recommended that we see a Perintologist and would call us the next day with an appointment.
The next day we drove the 40 minutes to the Peri's office dreading what we would hear but hoping for good news. He confirmed right away that it is for sure skeletal dysplasia, the limbs were about 6 weeks behind the rest of the body. They measured every part of my baby and I couldn't watch. It was too hard to see those images, to become even more attached to this little being when I didn't know if I was ever going to be able to see it alive, or hold it in my arms. They did an amnio and mentioned something about a heart defect and the appointment was over. I was told to come back in 3 weeks to go over the results. We were also scheduled for a fetal echocardiogram in 4 weeks.
Which brings us to today. I am 21 weeks 4 days pregnant and dreading next Wednesday when we will find out the test results. I have been praying for my baby every day, as have my family and friends. The one thing that brings me peace is knowing that no matter what happens this will always be our baby, our first, our little miracle. We have decided that no matter what the test results show we are carrying this baby to term if possible. We want to give it any chance for life we can, even if it is only a few moments. Next week we will find out the gender of the baby and will give it a name. I am asking anyone who reads this to please remember our little one in your prayers. I will be back next week to post the results.
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