Pregnancy Update/Request for T&P
Jan 28, 2015 12:55:26 GMT -5
Post by trixi282 on Jan 28, 2015 12:55:26 GMT -5
This is going to get long… TLDR at the end.
I posted in the “Preggly Talk” thread a couple of weeks ago that we were being referred to have a level 2 ultrasound done, and speak with a maternal fetal medical specialist (or perinatologist), because of a “small spot” in/near the right lung of baby #2 (aka Nugget).
Today we had that appointment, and it was not the outcome I was hoping for. We were there for over 2 hours getting a very good look at nugget, and the technician said that there was certainly something in the right side of the chest and it was fairly large. After the ultrasound, we did speak to a MFM and a genetic specialist (to try to determine if it could be linked to anything genetic) and came away with very few answers.
Basically the large mass is pushing the heart off center, to the left side, though the heart (from what they can see) looks to be okay. They can’t get a clear sense of what this might be, but the MFM’s best “guess” at this early stage is one of two things.
1. It could be CCAM or CPAM (Congenital Cystic Adenomatoid Malformation or Congenital Pulmonary Airway Malformation). This is basically lung tissue that grows abnormally and can create cysts of varying sizes. But most taper off with growth at some point and sometimes even reduce in size as time goes on.
2. It could be a Teratoma (aka tumor) of some sort. Depending on severity, the MFM said if this is the case, there is basically a lot more issues associated with that. So she wants to wait to get more testing/information before we talk about what that could mean.
So we are still in the unknown, we walked out of a 2+ hour appointment with no real answers.
I have to have a fetal MRI done next week, it’s tentatively scheduled for Wednesday morning at the University and afterward I’ll have another Ultrasound and meet with another MFM there who also has a background in genetics.
I’m assuming at this point, although we haven’t discussed it yet, that this means Nugget has a high chance of requiring surgery after birth. Unless it ends up being a cyst that stops growing/reduces over time I suppose. Hopefully after next weeks meeting I’ll have more information.
One other thing the MFM noted was that during the ultrasound Nugget didn’t open/close hands, which could potentially mean neurological disorders. It could be that they just didn’t see a good chance of it today, and we could see something later on…. But she asked me if I wanted to do an amnio today, to which I said no, I’d think about it. I thought it was odd that she thought I’d just hop on a table and say sure! That’s not a test to take lightly (IMO) and even after the MFM left the genetic specialist said she agreed that we could wait until after the MRI to decide if we wanted to do it or not.
I think I'm in a bit of shock… in one moment I start to get a bit emotional about it, but it passes quickly and a second later I’m numb and can’t believe it’s happening at all. I hate not having answers, and I know they will come in time (hopefully), I really don’t know what to think of it all yet.
Now I have to tell people IRL and I know my mom in particular is going to be a mess about it and want to ask me how I am and what’s this and what’s that, and sadly I just don’t want to talk about it. I don't have answers, and I can't give her any more information than I have...
And, H wants me to wait until he gets home from work tonight to tell his parents... so I have to sit through dinner tonight not telling them, and I don't know what to say while I wait for him to get home 2 hours later. "Yep had the U/S today... I'll tell you about it later when H gets home" ::awkward::
TLDR: We were referred to have a level 2 ultrasound done, and speak with a maternal fetal medical specialist (or perinatologist), because of a “small spot” in/near the right lung of baby #2 (aka Nugget) at our last ultrasound. Nugget has a substantial sized “mass” in the right side of their chest, and we don’t know what it is right now. I have to have a fetal MRI done next week to find out what it could be because the doc is just guessing at this point after a level 2 ultrasound.
I posted in the “Preggly Talk” thread a couple of weeks ago that we were being referred to have a level 2 ultrasound done, and speak with a maternal fetal medical specialist (or perinatologist), because of a “small spot” in/near the right lung of baby #2 (aka Nugget).
Today we had that appointment, and it was not the outcome I was hoping for. We were there for over 2 hours getting a very good look at nugget, and the technician said that there was certainly something in the right side of the chest and it was fairly large. After the ultrasound, we did speak to a MFM and a genetic specialist (to try to determine if it could be linked to anything genetic) and came away with very few answers.
Basically the large mass is pushing the heart off center, to the left side, though the heart (from what they can see) looks to be okay. They can’t get a clear sense of what this might be, but the MFM’s best “guess” at this early stage is one of two things.
1. It could be CCAM or CPAM (Congenital Cystic Adenomatoid Malformation or Congenital Pulmonary Airway Malformation). This is basically lung tissue that grows abnormally and can create cysts of varying sizes. But most taper off with growth at some point and sometimes even reduce in size as time goes on.
2. It could be a Teratoma (aka tumor) of some sort. Depending on severity, the MFM said if this is the case, there is basically a lot more issues associated with that. So she wants to wait to get more testing/information before we talk about what that could mean.
So we are still in the unknown, we walked out of a 2+ hour appointment with no real answers.
I have to have a fetal MRI done next week, it’s tentatively scheduled for Wednesday morning at the University and afterward I’ll have another Ultrasound and meet with another MFM there who also has a background in genetics.
I’m assuming at this point, although we haven’t discussed it yet, that this means Nugget has a high chance of requiring surgery after birth. Unless it ends up being a cyst that stops growing/reduces over time I suppose. Hopefully after next weeks meeting I’ll have more information.
One other thing the MFM noted was that during the ultrasound Nugget didn’t open/close hands, which could potentially mean neurological disorders. It could be that they just didn’t see a good chance of it today, and we could see something later on…. But she asked me if I wanted to do an amnio today, to which I said no, I’d think about it. I thought it was odd that she thought I’d just hop on a table and say sure! That’s not a test to take lightly (IMO) and even after the MFM left the genetic specialist said she agreed that we could wait until after the MRI to decide if we wanted to do it or not.
I think I'm in a bit of shock… in one moment I start to get a bit emotional about it, but it passes quickly and a second later I’m numb and can’t believe it’s happening at all. I hate not having answers, and I know they will come in time (hopefully), I really don’t know what to think of it all yet.
Now I have to tell people IRL and I know my mom in particular is going to be a mess about it and want to ask me how I am and what’s this and what’s that, and sadly I just don’t want to talk about it. I don't have answers, and I can't give her any more information than I have...
And, H wants me to wait until he gets home from work tonight to tell his parents... so I have to sit through dinner tonight not telling them, and I don't know what to say while I wait for him to get home 2 hours later. "Yep had the U/S today... I'll tell you about it later when H gets home" ::awkward::
TLDR: We were referred to have a level 2 ultrasound done, and speak with a maternal fetal medical specialist (or perinatologist), because of a “small spot” in/near the right lung of baby #2 (aka Nugget) at our last ultrasound. Nugget has a substantial sized “mass” in the right side of their chest, and we don’t know what it is right now. I have to have a fetal MRI done next week to find out what it could be because the doc is just guessing at this point after a level 2 ultrasound.
Hon, I'm so sorry you didn't get any answers today. I don't blame you for not knowing what to do or what to say. I hope it's "just" a cyst that goes away on it's own and Nugget doesn't need surgery or anything else. I hope next week's u/s gives you some answers so you can at least figure out what the next steps will be. 
