Today's novel, AKA: Update on Nugget
Feb 4, 2015 22:05:19 GMT -5
Post by trixi282 on Feb 4, 2015 22:05:19 GMT -5
Today was a long day of appointments... This is going to get long, and I'm sorry, but theres not really a great way to TLDR this one.... You can skip to the "down and dirty" paragraph below to get the basic outcome instead of the full day run down.
Started the day with a fetal MRI. It went fairly well and quicker than expected, thankfully. About 45 minutes of laying flat you my back, with just a pillow/wedge under my knees.... my back definitely started hurting, but they were great and gave me an extra pillow and Nugget cooperated and we were done about 15 minutes later.
I was finally able to eat, around 9am, thank you baby Jesus! Then we went for the fetal echocardiogram, which we were thankfully early for, because that seemed to take forever.... It's basically a super zoomed in ultrasound and Nugget was not quite as cooperative, likely because I finally fed the poor thing!
After at the neonatal cardiologist said that based on the scans the heart looked cramped for sure, but he didn't feel at this time (with the limited view they had) that the heart had any defects, it looked healthy. He also said that it didn't look at this time that the heart was being impacted too greatly and was functioning well. But that he wanted to keep an eye on it as time goes on as well so we can be sure all is ok with the mass in the chest pressing on it.
Next up was another ultrasound, to get some more measurements (and another close up look) of the mass in the chest.... The MFM (Perinatologist) came in after what seemed like forever waiting, and wanted to take another look herself (so much goop today!) and to finally give us her take on things and what the MRI said. BTW, at this point (and still tonight) my lower back was killing me!
**The down and dirty: 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. A 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 Tartoma.... So her 2nd idea is that it's the combo with CPAM and that, though she is fairly certain the Tartoma is not cancerous as it does not show typical modeling of that.
If its a Tartoma we will likely have a very bleak outcome as they typically continue growing and cause issues. So, today 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 today 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 Tartoma 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 tomorrow 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.
Thank you so very much for all of your continued thoughts and prayers. You all have been amazingly supportive the past week, and I'm so happy yo have all of you in my life, especially at this crazy time. Please keep thinking of us, and I'll continue updating you... Hopefully they'll get shorter. I'm so sorry I'm writing novels. It's just hard to condense this information!
Started the day with a fetal MRI. It went fairly well and quicker than expected, thankfully. About 45 minutes of laying flat you my back, with just a pillow/wedge under my knees.... my back definitely started hurting, but they were great and gave me an extra pillow and Nugget cooperated and we were done about 15 minutes later.
I was finally able to eat, around 9am, thank you baby Jesus! Then we went for the fetal echocardiogram, which we were thankfully early for, because that seemed to take forever.... It's basically a super zoomed in ultrasound and Nugget was not quite as cooperative, likely because I finally fed the poor thing!
After at the neonatal cardiologist said that based on the scans the heart looked cramped for sure, but he didn't feel at this time (with the limited view they had) that the heart had any defects, it looked healthy. He also said that it didn't look at this time that the heart was being impacted too greatly and was functioning well. But that he wanted to keep an eye on it as time goes on as well so we can be sure all is ok with the mass in the chest pressing on it.
Next up was another ultrasound, to get some more measurements (and another close up look) of the mass in the chest.... The MFM (Perinatologist) came in after what seemed like forever waiting, and wanted to take another look herself (so much goop today!) and to finally give us her take on things and what the MRI said. BTW, at this point (and still tonight) my lower back was killing me!
**The down and dirty: 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. A 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 Tartoma.... So her 2nd idea is that it's the combo with CPAM and that, though she is fairly certain the Tartoma is not cancerous as it does not show typical modeling of that.
If its a Tartoma we will likely have a very bleak outcome as they typically continue growing and cause issues. So, today 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 today 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 Tartoma 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 tomorrow 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.
Thank you so very much for all of your continued thoughts and prayers. You all have been amazingly supportive the past week, and I'm so happy yo have all of you in my life, especially at this crazy time. Please keep thinking of us, and I'll continue updating you... Hopefully they'll get shorter. I'm so sorry I'm writing novels. It's just hard to condense this information!
