Update after MRI
Feb 5, 2015 12:51:37 GMT -5
Post by trixi282 on Feb 5, 2015 12:51:37 GMT -5
Yesterday was an extremely long day of scans, tests, and more. We were at the hospital for 6+ hours... I shared this with my other birth board here, so I'm copy/pasting most of it here for simplicity.
I'll warn you there's a lot here, it's long, I tried to simplify it, but there's really not a good way to do that. So I've left out the "daily log" type stuff and got down to the results after a Fetal MRI, a Fetal Echocardiogram, and yet another Ultrasound.
Bottom line: the mass grew. More than they would have liked for only a week and more than they'd like to see relative to baby's size. It was actually putting substantial pressure on the heart, to the point that she said it would likely cause issues sooner rather than later even if it didn't seem to today. The neonatal cardiologist we met said that although the view of the heart was very obstructed, the function currently looks normal and the heart itself seems normal. He'll continue to monitor me along side the MFM. At this point, we're still kind of guessing what it is, unfortunately. The MRI helped confirm that the growth looks like a combination of solid mass and cysts. But the solid portion is now the thing they're questioning. Her current guess is a hybrid diagnosis of a Type II CPAM, with BPS (Bronco Pulmonary Sequestration). She is also not yet ruling out the Teratoma.... So her 2nd idea is that it's the combo with CPAM and that, though she is fairly certain the Teratoma is not cancerous as it does not show typical modeling of that.
If its a Teratoma we will likely have a very bleak outcome as they typically continue growing and cause issues. We were presented with some facts and some possibilities to think about for the future, and also procedures they can/should do or will need to do to keep this pregnancy viable. There were some possibilities that really out there, and I hope we don't come to do that.... (and she brought up "unless you chose not to continue..." and I almost lost it. I know some chose that but to think that was actually an option really hit me as "this shit is serious").
We chose to go ahead with a procedure yesterday called a thoracentisis... Think, amino, except they take fluid from the fetus and the growth in the chest to aid in reducing the size and taking pressure off of the chest all around, specifically the heart (and it will help determine what the solid mass is). That will hopefully slow the growth, although most do gain fluid back, it's just a question of how quickly that happens....
The procedure went well, and she was able to catch Nugget in a window as to not have to also go through my anterior placenta, so one less possible complication to worry about. The size was reduced greatly with that procedure, and we will continue monitoring it... I go back on Monday to see her and check the size of the mass and also look at the fluid in the stomach, skin, and other areas of concern that will hopefully be helped.
They will be testing the fluid they took today to verify if it is a Teratoma or not. And they will also be doing a full chromosomal panel on it to rule out any other defects. Those results could take up to 2 weeks to get back.
As Nugget grows we may need to consider a stint placed in a similar fashion so we don't have to continue doing the procedure they did today (which we might have to do again before that time comes) because a stint would reduce how many times we both get poked as that of course is a very good thing. The stint would drain the fluid from the chest into the sac.
Fact is baby is going to need surgery at some point.... Whether that is right away after birth or months (up to a year) down the line will be fully dependent on what this turns out to be, and if it continues growing or slows down soon.... The cysts usually slow/stop growing between 25-28 weeks, so let's hope that happens. But the more solid mass is another question/concern as time goes on too.
I was also given a steroid shot that is typically given to mommies who are typically expecting (or needing) to deliver early, as it helps the development of the lungs. Although we don't necessarily need that at this point, it has also been shown to help slow or reduce the growth of the CPAM, so we said "lets do it". I have to go to another office today to get a second shot.
We updated our parents, but left out the "bleak outcome if..." possibility. We don't want to worry them too much unless we find out that is the prognosis.
Thanks for all of your T&P and support. I'll try to update again when I hear more.
I'll warn you there's a lot here, it's long, I tried to simplify it, but there's really not a good way to do that. So I've left out the "daily log" type stuff and got down to the results after a Fetal MRI, a Fetal Echocardiogram, and yet another Ultrasound.
Bottom line: the mass grew. More than they would have liked for only a week and more than they'd like to see relative to baby's size. It was actually putting substantial pressure on the heart, to the point that she said it would likely cause issues sooner rather than later even if it didn't seem to today. The neonatal cardiologist we met said that although the view of the heart was very obstructed, the function currently looks normal and the heart itself seems normal. He'll continue to monitor me along side the MFM. At this point, we're still kind of guessing what it is, unfortunately. The MRI helped confirm that the growth looks like a combination of solid mass and cysts. But the solid portion is now the thing they're questioning. Her current guess is a hybrid diagnosis of a Type II CPAM, with BPS (Bronco Pulmonary Sequestration). She is also not yet ruling out the Teratoma.... So her 2nd idea is that it's the combo with CPAM and that, though she is fairly certain the Teratoma is not cancerous as it does not show typical modeling of that.
If its a Teratoma we will likely have a very bleak outcome as they typically continue growing and cause issues. We were presented with some facts and some possibilities to think about for the future, and also procedures they can/should do or will need to do to keep this pregnancy viable. There were some possibilities that really out there, and I hope we don't come to do that.... (and she brought up "unless you chose not to continue..." and I almost lost it. I know some chose that but to think that was actually an option really hit me as "this shit is serious").
We chose to go ahead with a procedure yesterday called a thoracentisis... Think, amino, except they take fluid from the fetus and the growth in the chest to aid in reducing the size and taking pressure off of the chest all around, specifically the heart (and it will help determine what the solid mass is). That will hopefully slow the growth, although most do gain fluid back, it's just a question of how quickly that happens....
The procedure went well, and she was able to catch Nugget in a window as to not have to also go through my anterior placenta, so one less possible complication to worry about. The size was reduced greatly with that procedure, and we will continue monitoring it... I go back on Monday to see her and check the size of the mass and also look at the fluid in the stomach, skin, and other areas of concern that will hopefully be helped.
They will be testing the fluid they took today to verify if it is a Teratoma or not. And they will also be doing a full chromosomal panel on it to rule out any other defects. Those results could take up to 2 weeks to get back.
As Nugget grows we may need to consider a stint placed in a similar fashion so we don't have to continue doing the procedure they did today (which we might have to do again before that time comes) because a stint would reduce how many times we both get poked as that of course is a very good thing. The stint would drain the fluid from the chest into the sac.
Fact is baby is going to need surgery at some point.... Whether that is right away after birth or months (up to a year) down the line will be fully dependent on what this turns out to be, and if it continues growing or slows down soon.... The cysts usually slow/stop growing between 25-28 weeks, so let's hope that happens. But the more solid mass is another question/concern as time goes on too.
I was also given a steroid shot that is typically given to mommies who are typically expecting (or needing) to deliver early, as it helps the development of the lungs. Although we don't necessarily need that at this point, it has also been shown to help slow or reduce the growth of the CPAM, so we said "lets do it". I have to go to another office today to get a second shot.
We updated our parents, but left out the "bleak outcome if..." possibility. We don't want to worry them too much unless we find out that is the prognosis.
Thanks for all of your T&P and support. I'll try to update again when I hear more.
