It looks like things are holding steady for another week. There is no major change in the numbers, but we can see that the heart is closer to where it should be than when we began.
Jeff was unable to attend this ultrasound (first one he's missed) due to a very important broomball game. Since we have come to expect nothing earth-shattering to be revealed by the ultrasounds at this stage, I gave him my blessing and wished him luck. That, however, did not stop me from allowing everyone I saw that day to laugh a bit at his priorities. :) For the last two weeks, Jeff's been involved in a company-wide broomball tournament. His team had made it down to the final four. Unfortunately, they lost in overtime, but they had a lot of fun.
Thursday, February 24, 2011
Thursday, February 17, 2011
After four appointments this week we now know...
that we have to wait and see.
Grrrrr. I don't like that phrase. It's a good thing, really; it's just becoming hard to live with week after week. Deciding on one course of action or another at this point would means that things aren't going well. But things are going well--the CVR, depending on how they measure it, has either dropped to .5 or stayed the same at .8. Maybe I've mentioned it before, but the mass is a tricky thing to measure; there are two different ways to do it; and it's not an exact science.
Besides our ultrasound, we have also done a consultation with the pediatric surgeon, a NICU consultation and tour, and a midwife visit with my one-hour glucose test. We didn't lean much, but a few things we did learn:
- Baby is up to 2 lb. 13 oz, which is in the 60th percentile, so he is growing well.
- The heart appears to be starting to shift back towards the left where it belongs.
- There is no magic number that determines where and how we deliver--it depends on the opinions of a variety of doctors. (This shouldn't come as a surprise to us by now, but we are both people that like to think of things in terms of numbers and facts.)
- We probably won't have to do an MRI in utero. Baby will probably have to do one on his own sometime after birth.
- The surgery to remove the Sequestration/CCAM will probably happen at around 3 months.
- Baby will likely spend some time in the NICU after birth even if he isn't having problems so they can observe him and make sure he's doing ok. The amount of time could vary from a few hours if he's fine to several days if he's having trouble.
- It's sounding more and more likely that we will not have to do a C-section.
That's all for this week's appointments. Next week we get to go back to doing just one--the ultrasound is scheduled for Wednesday. Until then...
Grrrrr. I don't like that phrase. It's a good thing, really; it's just becoming hard to live with week after week. Deciding on one course of action or another at this point would means that things aren't going well. But things are going well--the CVR, depending on how they measure it, has either dropped to .5 or stayed the same at .8. Maybe I've mentioned it before, but the mass is a tricky thing to measure; there are two different ways to do it; and it's not an exact science.
Besides our ultrasound, we have also done a consultation with the pediatric surgeon, a NICU consultation and tour, and a midwife visit with my one-hour glucose test. We didn't lean much, but a few things we did learn:
- Baby is up to 2 lb. 13 oz, which is in the 60th percentile, so he is growing well.
- The heart appears to be starting to shift back towards the left where it belongs.
- There is no magic number that determines where and how we deliver--it depends on the opinions of a variety of doctors. (This shouldn't come as a surprise to us by now, but we are both people that like to think of things in terms of numbers and facts.)
- We probably won't have to do an MRI in utero. Baby will probably have to do one on his own sometime after birth.
- The surgery to remove the Sequestration/CCAM will probably happen at around 3 months.
- Baby will likely spend some time in the NICU after birth even if he isn't having problems so they can observe him and make sure he's doing ok. The amount of time could vary from a few hours if he's fine to several days if he's having trouble.
- It's sounding more and more likely that we will not have to do a C-section.
That's all for this week's appointments. Next week we get to go back to doing just one--the ultrasound is scheduled for Wednesday. Until then...
Wednesday, February 9, 2011
Echocardiogram
Today, the baby had an echocardiogram (a fancy word for an ultrasound that focuses on the heart). This was our first trek to the U of M hospital, which is where we'll deliver if there is a chance Baby will need surgery right away. The results were pretty much what we expected. They confirmed that the heart is being stressed by the mass, but not beyond what it can handle. It's functioning well right now. Baby will have to have another echocardiogram within 24 hours after birth, but that is about the only conclusion that came out of our appointment.
Jeff's aunt, Carol, came over to watch the boys, so Carter and Logan got to stay home while we did our appointment. It turned out to be a really good thing because Logan came down with another fever last night and has had a rough day. This is the third time in three or four weeks, I think. Even though his fevers get a bit high, I think it's teething. Teething is really rough for this kid and a new tooth seems to appear shortly after every episode. So it was great that the boys could stay home and Logan could nap in his own bed. Carol even brought supper for us, which was a wonderful blessing for a mom with a clingy, sick toddler and no kitchen. (Have I mentioned that our kitchen is being remodeled?) So we had tasty taco soup for supper.
Another encouraging thing today was that our contractor started installing kitchen cabinets. It's so fun to see the space starting to take shape.
So it's been a long day, but good in many ways. Still...I can't wait to be in bed!
Jeff's aunt, Carol, came over to watch the boys, so Carter and Logan got to stay home while we did our appointment. It turned out to be a really good thing because Logan came down with another fever last night and has had a rough day. This is the third time in three or four weeks, I think. Even though his fevers get a bit high, I think it's teething. Teething is really rough for this kid and a new tooth seems to appear shortly after every episode. So it was great that the boys could stay home and Logan could nap in his own bed. Carol even brought supper for us, which was a wonderful blessing for a mom with a clingy, sick toddler and no kitchen. (Have I mentioned that our kitchen is being remodeled?) So we had tasty taco soup for supper.
Another encouraging thing today was that our contractor started installing kitchen cabinets. It's so fun to see the space starting to take shape.
So it's been a long day, but good in many ways. Still...I can't wait to be in bed!
Monday, February 7, 2011
Holding Steady
This week's ultrasound showed that the CVR is at .8. The doctor told us that the difference between last week and this week is so minor that it could be accounted for simply by the fact the CCAM is hard to measure and there is bound to be a little variation. Not only that, but just when we thought Baby couldn't be more uncooperative for his ultrasounds, he proved us wrong. He was in a head-up, face-towards-my-back position today, which didn't allow the ultrasound tech to get a good angle for getting measurements. This trend of uncooperativeness during ultrasounds does not bode well for the future. :)
So for now, things are holding steady.
We also confirmed what we suspected last week--going from a CVR of 1.4 to .7 did not mean that the mass had shrunk to half it's size. It's still a very good thing, but the numbers just aren't that simple.
The doctor thinks that in the next month we should be able to get a much better idea of where we'll deliver Baby. We'll need to see more shrinkage to be able to deliver with my midwife as originally planned, but that is very possible. So we just keep waiting, watching and praying.
So for now, things are holding steady.
We also confirmed what we suspected last week--going from a CVR of 1.4 to .7 did not mean that the mass had shrunk to half it's size. It's still a very good thing, but the numbers just aren't that simple.
The doctor thinks that in the next month we should be able to get a much better idea of where we'll deliver Baby. We'll need to see more shrinkage to be able to deliver with my midwife as originally planned, but that is very possible. So we just keep waiting, watching and praying.
Sunday, February 6, 2011
An Answered Prayer
I didn't realize it until I was talking with my small group at ladies' Bible study the other night, but God is already answering one of my prayers for this process. I was telling everyone that the boys are doing great and everything at home is very normal. It almost feels too normal, in fact. Shouldn't we be doing something more than running to the grocery store, cleaning up after lunch, and deciding who has first dibs on the one toy they both want to play with?
But that normalcy is what we need right now. I am very concerned that Carter and Logan don't bear the brunt of the stress we feel over Baby's condition. And so far we haven't been stressed too much. We've been able to be very much at peace with what we're dealing with and what's in store. And that's a blessing.
There will come times when we are stressed. We'll be dealing with insurance questions. Baby will come home and need all the attention that babies need--and possibly more. When these times come, I'll renew my request that you pray for our other boys and that we manage to stay patient and give them the attention that they need.
But for now, God has given us a calm before the storm. A storm which could be very mild or severe. Sometimes it's hard to wait for the storm (that's another post for another time), but I will do my best to recognize this calm as the blessing that it is and to focus on the two boys that are clamoring for my attention as I blog. :)
But that normalcy is what we need right now. I am very concerned that Carter and Logan don't bear the brunt of the stress we feel over Baby's condition. And so far we haven't been stressed too much. We've been able to be very much at peace with what we're dealing with and what's in store. And that's a blessing.
There will come times when we are stressed. We'll be dealing with insurance questions. Baby will come home and need all the attention that babies need--and possibly more. When these times come, I'll renew my request that you pray for our other boys and that we manage to stay patient and give them the attention that they need.
But for now, God has given us a calm before the storm. A storm which could be very mild or severe. Sometimes it's hard to wait for the storm (that's another post for another time), but I will do my best to recognize this calm as the blessing that it is and to focus on the two boys that are clamoring for my attention as I blog. :)
What's going on in my head...
In the days after we learned about the mass in Baby's chest, I thought a lot about how the doctors and staff spoke about our baby. They were all so kind, so reassuring. There was never the slightest suggestion that this baby was going to be too much work, too much money, too much bother. I would have been deeply offended if there had been. Instead, they told us exactly what needed to happen and the potentially lengthy measures that would be taken to ensure Baby's health--even surgery in utero if necessary.
Now we have made it past the point where surgery in utero would be needed and hopefully we won't need to do much more than monitor Baby for quite some time. But I'm still thinking about what the medical world could and would do for my unborn son. And it strikes me as hypocritical.
Believe me, I'm so grateful for the modern medicine that can help my baby, but it's amazing to me that my baby is worth fighting for simply because he is wanted, not necessarily because he's human. I know that medical technology has helped us see unborn babies for what they are, and more and more people are realizing that their lives are worth fighting for. But I hope it continues that way. I hope it does because we won't be able to have it both ways forever. An unborn baby is either a person or it's not, and if the medical world and public policy slide the other way, I shudder to think of the mothers like me who might be told, "I'm sorry, but it's only a fetus, and it just isn't worth using the limited resources we have..."
Now we have made it past the point where surgery in utero would be needed and hopefully we won't need to do much more than monitor Baby for quite some time. But I'm still thinking about what the medical world could and would do for my unborn son. And it strikes me as hypocritical.
Believe me, I'm so grateful for the modern medicine that can help my baby, but it's amazing to me that my baby is worth fighting for simply because he is wanted, not necessarily because he's human. I know that medical technology has helped us see unborn babies for what they are, and more and more people are realizing that their lives are worth fighting for. But I hope it continues that way. I hope it does because we won't be able to have it both ways forever. An unborn baby is either a person or it's not, and if the medical world and public policy slide the other way, I shudder to think of the mothers like me who might be told, "I'm sorry, but it's only a fetus, and it just isn't worth using the limited resources we have..."
Tuesday, February 1, 2011
The Diagnosis is What Counts
What a crazy morning we've had! But I'll get to that in a minute; the important thing is that the ultrasound showed that things are looking really good this week!
The CVR is down to .73. I can't believe it! That's half of what it was last week, not to mention it's the lowest number we've seen. This is the first time we've seen the mass shrink without the help of steroids. Very encouraging.
So our crazy morning was this: I dropped Carter off and preschool, dropped Logan off at Vassars' house, and picked up Jeff at the place where we'd agreed to meet. It was tight, but I got everyone where they needed to be, and we got to the appointment on time. And then we waited. We checked to be sure they knew we were there. And we waited some more. After waiting almost 40 minutes, just as we were discussing whether or not we'd actually have time to do the ultrasound, we were called in. The lady who put our info into the ultrasound computer was having trouble and had to do it twice. The lady who did our ultrasound was super fast, but after it was done, she had to come back to take some more pictures because of some computer trouble. Then the doctor came in and we discussed the results. We needed to set up more appointments, so we stopped by the desk on our way out, but there were more computer problems. After getting one appointment in, we decided that we NEEDED to go, so we left her to set up the rest and call us with the times. I drove Jeff back to his car, and then headed to preschool to pick up Carter. I got there five minutes late, collected Carter, and we were off to pick up Logan and head home for lunch. I can't tell you how glad I am to be home and not have any deadlines for the rest of the day!
I wish I'd been able to process this week's info and talk to the doctor a bit more. I still can't figure out exactly what the CVR number means--even though the number has gone down by half, it was apparent that the mass isn't half the size that it was. It still takes up the better part of the left side of his chest. I guess it really doesn't matter for now. The important thing is that things are looking good. I'll ask questions next week. The doctor did tell us that we will continue to do ultrasounds weekly for now, but if we see a pattern of shrinkage, we might be able to back off a bit. I hope so: Next week we have our ultrasound on Monday and a Fetal Echocardiogram on Wednesday. The week after that, I have a midwife visit (with the one-hour glucose test), a pediatric surgery consult, and an ultrasound. After that, I'll probably be wanting a bit of a break from appointments. :)
The CVR is down to .73. I can't believe it! That's half of what it was last week, not to mention it's the lowest number we've seen. This is the first time we've seen the mass shrink without the help of steroids. Very encouraging.
So our crazy morning was this: I dropped Carter off and preschool, dropped Logan off at Vassars' house, and picked up Jeff at the place where we'd agreed to meet. It was tight, but I got everyone where they needed to be, and we got to the appointment on time. And then we waited. We checked to be sure they knew we were there. And we waited some more. After waiting almost 40 minutes, just as we were discussing whether or not we'd actually have time to do the ultrasound, we were called in. The lady who put our info into the ultrasound computer was having trouble and had to do it twice. The lady who did our ultrasound was super fast, but after it was done, she had to come back to take some more pictures because of some computer trouble. Then the doctor came in and we discussed the results. We needed to set up more appointments, so we stopped by the desk on our way out, but there were more computer problems. After getting one appointment in, we decided that we NEEDED to go, so we left her to set up the rest and call us with the times. I drove Jeff back to his car, and then headed to preschool to pick up Carter. I got there five minutes late, collected Carter, and we were off to pick up Logan and head home for lunch. I can't tell you how glad I am to be home and not have any deadlines for the rest of the day!
I wish I'd been able to process this week's info and talk to the doctor a bit more. I still can't figure out exactly what the CVR number means--even though the number has gone down by half, it was apparent that the mass isn't half the size that it was. It still takes up the better part of the left side of his chest. I guess it really doesn't matter for now. The important thing is that things are looking good. I'll ask questions next week. The doctor did tell us that we will continue to do ultrasounds weekly for now, but if we see a pattern of shrinkage, we might be able to back off a bit. I hope so: Next week we have our ultrasound on Monday and a Fetal Echocardiogram on Wednesday. The week after that, I have a midwife visit (with the one-hour glucose test), a pediatric surgery consult, and an ultrasound. After that, I'll probably be wanting a bit of a break from appointments. :)
Subscribe to:
Posts (Atom)