There really aren't any new developments this week with respect to the new baby. I went in on Monday for an ultrasound, and the baby looked fine. The hygroma does not appear to have grown any, and there does not appear to be any fluid around the heart of lungs, which will continue to be a concern for as long as this pregnancy lasts. It was a little surreal looking at the ultrasound pictures. The baby has grown quite a bit since the last time I saw it on the ultrasound. The baby is moving and looks fairly normal to me other than the hygroma. It is a little hard to peek in at this baby that seems so normal and know that there is something terribly wrong despite how well the baby seems to be doing right now. As hard as it was to look at the pictures with tat in mind, I did actually gain some peace and a greater sense of calm and hope than I have experienced since we first learned about the baby's condition. A large part of this calm has come from being paired up with such a wonderful, compassionate midwife who has truly gone above and beyond to help me through this. LTC Franklin gave up her lunch break to talk to me and do this ultrasound on Monday. She and I talked for a long time. Her compassion is so genuine and her personality is so calming that it really helped me out a great deal. We have weekly ultrasounds scheduled now, but seeing her is almost likely having a weekly therapy session as well. She is a self-described "free spirit," which is probably about the right fir for me right now. My spirit is anything but free right now.
I have also spoken to several infant loss specialists this week and have an appointment scheduled for next week. Though we are not at the point of experiencing pregnancy or infant loss, we are definitely grieving the loss of a normal pregnancy. We have been blessed with so many people willing to help us get the resources we need to navigate all of the medical decisions we have coming up. I have another ultrasound scheduled for Monday and an ultrasound and amniocentesis scheduled for Friday. Though this testing comes with some risk, whatever the outcome, we will at least find peace in being able to have some more answers. One day at a time...
In other news, this has been a less-than-healthy week in the Decker household. I was feeling pretty bad on Thursday, so I was put on two days "quarters" (military sick leave). I really, really hated to leave work this week, especially after having been out so much lately, but I was feeling really bad and noticed that I was pretty crabby to be around. I assumed all of this was related to being pregnant, so I came home and slept all afternoon. When Timmy came home form daycare he was running a fever of 103 (YIKES!). I took y temperature and it was up as well, so I assume we both got the "crud." I have to stifle the panic and temptation to run straight to the ER with Timmy. We got his temp down a few degrees with a lukewarm bath, some Motrin and some iced apple juice. I kept him with me the next day and Tim took him to the doctor. It turns out that he had a pretty nasty ear infection. My fever got better with rest (imagine that...listen to doctor's orders and get better. What a concept).
As if that wasn't enough, our dog Chance got sick as well yesterday. This is sort of gross, so read on only if you dare. Chance got a hold of something that made his tummy upset. He threw up faster than we could clean it up, a total of 6-7 times in a few hours. While Tim was downstairs cleaning, I was upstairs with Chance. He started to get sick again, so I held out the closest container I could find, which turned out to be a bowl. Chance managed to arch the yack over the bowl I was holding and barf all over my legs, all the way from my waist down. That was almost the last straw with both Tim and I. We both vowed that Chance was more trouble than he was worth. However, after an uneventful night and a full recovery today, we have decided to welcome him back into our hearts. What can we say...we love the big lug.
Saturday, January 31, 2009
Saturday, January 24, 2009
Trip to Virginia
We just returned from our trip to Virginia. We got a chance to decompress a little bit from recent events and visit with some family and friends. On Monday evening we went to Maryland to visit our friends Ryan, Nancy and their daughter, Jillian. It was great to get to see them again and also to give Timmy and Jillian have some time to play together. We went to an EXCELLENT seafood restaurant and had some crab, tuna, hush puppies and soup. The utensils and "china" were barely a step up from matching Cool-Whip containers, but the food was definitely worth five stars.
When we returned from Maryland, I went to a hospital near my parents' house to check on the baby. I was concerned about getting on an airplane with an impending miscarriage. The hospital performed an ultrasound. Luckily, the baby had a strong heartbeat and there was nothing to indicate any problems as of yet. That puts me at 12 weeks pregnant as of this past Thursday. We do not know what the future holds, but we continue to hope for the best.
When we returned from Maryland, I went to a hospital near my parents' house to check on the baby. I was concerned about getting on an airplane with an impending miscarriage. The hospital performed an ultrasound. Luckily, the baby had a strong heartbeat and there was nothing to indicate any problems as of yet. That puts me at 12 weeks pregnant as of this past Thursday. We do not know what the future holds, but we continue to hope for the best.
Tuesday, January 20, 2009
As many know by now, but as of yet we have failed to blog, Tim and I are pregnant with our second baby. We have known for quite some time now, but have only gradually been making announcements. The sad news is that I went in for an OB check at 11 weeks last week and the midwife found an abnormality on the ultrasound. The baby is still alive and has a strong heartbeat, but there is definitely a problem.
After the initial ultrasound, we went to radiology and had a level II ultrasound with better resolution. We knew instantly that there was a real problem when the tech sent for a doctor to explain the findings. We were given some preliminary thoughts form the radiologist and booked immediately for the next morning to see a maternal-fetal specialist.
On Friday, we travelled to Topeka for a series of appointments that lasted over two and a half hours. I received another ultrasound and we spoke with the genetic counselor and the the doctor. The genetic counselor explained that the baby has a cystic hygroma. This is caused by a blockage of the lymphatic system that results in a collection of lymphatic fluid in the soft tissue behind the neck and base of the head. This is the cystic hygroma that was seen on the ultrasound. According to the genetic counselor, this marker carries with it a 30-50% chance that the baby will have a major genetic problem. The top three possibilities are Turner's Syndrome, Down's Syndrome and Trisomy 18. All of these conditions are seriously problematic for various reasons and have different prognoses. We have several options for getting a definitive diagnosis, but those testing options are several weeks away. The genetic counselor said that the most likely cause for a cystic hygroma is Turner' Syndrome, but there was another soft marker (lack of formation of nasal structures) that would also be a soft marker for Down's Syndrome.
We spoke with the genetic counselor for quite a while and then met with the doctor. The doctor painted a much different picture. He felt very certain that the condition was Turner's Syndrome because of the size of the cystic hygroma. Turner's Syndrome is a genetic condition that only affects females and can carry with it a number of health problems. From what we have read, girls with Turner's Syndrome generally lead happy, healthy lives without the cognitive disability that is seen in Down's Syndrome. However, there are very few women/ girls with this condition because it generally carries a 98-99% miscarriage rate. The doctor was confident that the condition was Turner's and very confident that the pregnancy would end in miscarriage. He was very compassionate but also very blunt, straightforward and confident in his assessment that we should prepare mentally and emotionally for the end of the pregnancy. Usually miscarriage happens with this condition prior to 12 weeks, but he did warn that it could take 20 weeks or even more before the miscarrriage happens. The timing depends on how quickly the cystic hygroma progresses and the effect that it has on the heart. As of 11 weeks, the baby's heart was doing fine.
From an emotional standpoint, Tim and I are deeply saddened, overwhelmed and a little scared for our uncertain future. We do not have many options at this point other than to wait it out. We plan on receiving weekly or bi-weekly ultrasounds to check on the baby from this point on. Other than that, we will probably be doing a lot of waiting, worrying and talking about the future. Should we end up having a special needs child, that will obviously change a lot about our future and the vision that we had for our lives. At this point, we just don't have enough information to really make any plans, so we wait.....
After the initial ultrasound, we went to radiology and had a level II ultrasound with better resolution. We knew instantly that there was a real problem when the tech sent for a doctor to explain the findings. We were given some preliminary thoughts form the radiologist and booked immediately for the next morning to see a maternal-fetal specialist.
On Friday, we travelled to Topeka for a series of appointments that lasted over two and a half hours. I received another ultrasound and we spoke with the genetic counselor and the the doctor. The genetic counselor explained that the baby has a cystic hygroma. This is caused by a blockage of the lymphatic system that results in a collection of lymphatic fluid in the soft tissue behind the neck and base of the head. This is the cystic hygroma that was seen on the ultrasound. According to the genetic counselor, this marker carries with it a 30-50% chance that the baby will have a major genetic problem. The top three possibilities are Turner's Syndrome, Down's Syndrome and Trisomy 18. All of these conditions are seriously problematic for various reasons and have different prognoses. We have several options for getting a definitive diagnosis, but those testing options are several weeks away. The genetic counselor said that the most likely cause for a cystic hygroma is Turner' Syndrome, but there was another soft marker (lack of formation of nasal structures) that would also be a soft marker for Down's Syndrome.
We spoke with the genetic counselor for quite a while and then met with the doctor. The doctor painted a much different picture. He felt very certain that the condition was Turner's Syndrome because of the size of the cystic hygroma. Turner's Syndrome is a genetic condition that only affects females and can carry with it a number of health problems. From what we have read, girls with Turner's Syndrome generally lead happy, healthy lives without the cognitive disability that is seen in Down's Syndrome. However, there are very few women/ girls with this condition because it generally carries a 98-99% miscarriage rate. The doctor was confident that the condition was Turner's and very confident that the pregnancy would end in miscarriage. He was very compassionate but also very blunt, straightforward and confident in his assessment that we should prepare mentally and emotionally for the end of the pregnancy. Usually miscarriage happens with this condition prior to 12 weeks, but he did warn that it could take 20 weeks or even more before the miscarrriage happens. The timing depends on how quickly the cystic hygroma progresses and the effect that it has on the heart. As of 11 weeks, the baby's heart was doing fine.
From an emotional standpoint, Tim and I are deeply saddened, overwhelmed and a little scared for our uncertain future. We do not have many options at this point other than to wait it out. We plan on receiving weekly or bi-weekly ultrasounds to check on the baby from this point on. Other than that, we will probably be doing a lot of waiting, worrying and talking about the future. Should we end up having a special needs child, that will obviously change a lot about our future and the vision that we had for our lives. At this point, we just don't have enough information to really make any plans, so we wait.....
Saturday, January 3, 2009
Christmas!
The month of December and the holiday season just flew by! We have had a lot going on and have been busy every single weekend for the past several weeks. Tim graduated from the Career Course in Kentucky in the beginning o December. He came back to Kansas in mid-December to attend the hospital's Holiday Ball with me. He had to go back to Kentucky for a few days to finish up his outprocessing and "officially" move back to Kansas for good! Unfortunately, Tim's "move-home" timeline was a little rushed due to the fact that I landed myself in the hospital for a few days. It wasn't anything real serious, but I got a particularly nasty virus that made me dehydrated. It took a couple of days to perk back up, but I'm back on my feet and completely recovered by now. This experience did, however, remind me just how lucky I am to have the family that I do. When I was in the hospital I called my Mom and asked her about the possibility of having her come out to take care of Timmy "just in case" I was in the hospital longer than expected. Fifteen minutes later she called back to tell me that she would be in Kansas that same night. Not only that, after arriving in the middle of the night she drove over two hours through a pretty wicked snowstorm to get here. That's a dedicated Mom! In the end, I got released after just a few days and Tim was able to get back to Kansas earlier than anticipated. However, it was great to have Mom around to help out with Timmy and the house while I recovered. I owe you one, Mom!
For Christmas Tim and I went to California to visit Mom and Dad Decker, et al. We were excited to be a part of a huge family reunion with Tim's Grandpa, Aunts, Uncles, Cousins, brother and new sister-in-law-to-be. All in all, there were FIFTEEN of us all living in the house. We had a great time and had plenty of time to relax and enjoy each other's company.
The big announcement for the Christmas holiday is that Tim's brother, Rick got engaged to his girlfriend-now-fiance, Rachel. We are absolutely thrilled for Rick and Rachel and were excited to be there to share the moment with both of them. Congrats you two!
Tim, Timmy and I are back home from California and enjoying life together as a unified family. It is great to have Tim back home from Kentucky. Timmy definitely benefits from the extra attention and having another parent around. He is a lot of fun and energy. He has taken a liking to running, throwing and picking through drawers, cabinets, etc. He is quite the handful, but so much fun!
For Christmas Tim and I went to California to visit Mom and Dad Decker, et al. We were excited to be a part of a huge family reunion with Tim's Grandpa, Aunts, Uncles, Cousins, brother and new sister-in-law-to-be. All in all, there were FIFTEEN of us all living in the house. We had a great time and had plenty of time to relax and enjoy each other's company.
The big announcement for the Christmas holiday is that Tim's brother, Rick got engaged to his girlfriend-now-fiance, Rachel. We are absolutely thrilled for Rick and Rachel and were excited to be there to share the moment with both of them. Congrats you two!
Tim, Timmy and I are back home from California and enjoying life together as a unified family. It is great to have Tim back home from Kentucky. Timmy definitely benefits from the extra attention and having another parent around. He is a lot of fun and energy. He has taken a liking to running, throwing and picking through drawers, cabinets, etc. He is quite the handful, but so much fun!
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