@libbberty I’m glad your sweet babe continues to show good progress! I’m sorry the stress has been wearing on you. I’m still keeping you all in my thoughts and prayers. Thanks for this update!!
Jan '18 December Siggy Challenge: Christmas Movies
@libbberty as everyone else has said, thanks so much for keeping us updated! I am so very happy for your good news and will continue to pray for Tuesday! Xoxo! ❤️
@libbberty so glad to hear positive news. Still praying over here for you and your family for continued positive results. Creepy internet hugs all around! btw I am definitely not an all babies are cute kind of person, but your LO looks absolutely adorable!!
I hope your apt goes awesome today , and the fluid has remained stable !! I will be thinking about you and sending positive thoughts and prayers your way today . Hopefully you got some rest over the weekend and you were able to relax ( as much as humanly possible right now ) grow baby grow !! How many weeks are you?
@libbberty you are one strong woman and mother... thank you for keeping us posted, and i am continuing to pray for you and your amazing little fighter in there!!
HUGS and love going your way mama That U/S pic was adorable!!! Thinking of you and your appointment today! Hope you got some positive news! We’re all rooting for you and LO!! Xoxo
Here's our updates from Tuesday and Wednesday. Tried to trim a bit for you!
TUESDAY
Despite me trying to prep LO to give his/her dad the birthday gift of a lifetime today, we had a bit of a rough appt.
Good news:
No hydrops/ascites still
Fluid in chest appeared to be around the same as Friday according to the tech (no doctor was there to confirm) – this is probably a pretty big win in all actuality, but dampened by our not so good news below
Not so good news:
Baby scored 6/8 on the biophysical profile. This was our first imperfect score. Baby was sleeping a bit and being pretty inactive, so we didn’t see the diaphragm move (which indicates baby is practicing breathing and gets baby “two points”). We usually see this in the first two minutes of the exam because baby is such a mover. Not today! So, we have to go back tomorrow to get tested again to make sure all is okay. This happens, but it is still scary, especially with a high risk baby.
Amniotic fluid is back where it was post-surgery, so any positive gains in that area that we had by Friday are gone (although these numbers do fluctuate occasionally) - baby needs to swallow more
Baby had a “quiet” day yesterday, so mom is a little paranoid and hoping baby wakes up a bit more
Didn’t get to talk with a doctor (although we have a great tech)
Overall, it was a rough morning for us and we’re feeling pretty discouraged, but hoping tomorrow turns it around. Not what we wanted for Chris' birthday!
WEDNESDAY
Thank you to all of you who prayed for us today after our discouraging day yesterday. You lifted us up. We went in today and our little one was ready to go after Chris made us a smoothie to get those sugars going. We passed the profile within 2 minutes! Baby has also “woken up” in terms of activity, so we’re feeling a bit better. Baby hiccups are adorable no matter what, but I was especially thankful to feel them when I learned it is a sign baby is practicing breathing!
We also got to see lung tissue briefly but didn’t get to differentiate right lung from left, or learn anything about lung size (disappointing for me that we can't get more info, but trying to stay strong). Our biggest challenge is making sure those lungs grow. The heart is still shifted to the right a bit, but not as significantly as prior to the procedure. At the end of the scan, baby showed us s/he could stick out his/her tongue and also opened his/her eyes and mouth a few times. We assume this was the little one’s way of showing off and reminding us that we don’t always get what we want the moment we want it – a sassy baby already.
We also got some news about the pleural fluid results (fluid from baby’s chest). Results indicated it is transudate fluid, and not chyl. This is the result we “wanted”. Transudate fluid is still not great (we don’t want ANY fluid in baby’s chest) because it indicates that the heart was likely pressured from the mass (resulting in the production of fluid due to heart failure), but chyl indicates there is a lymph drainage problem, which is often systemic – and we want this tumor to be an isolated problem. So, we’re glad the results came back for transudate because it provides a bit more evidence in favor of our diagnosis (and it is basically what we would have expected). We’ll know more when we get the amniocentesis results back (still a week to go) but this was a good start.
We now don’t go in until Tues for our next ultrasound. Although it feels far away, we’re looking forward to spending some time outside of the hospital. Hoping baby has normal amounts of activity until then so I don’t get too paranoid!
Tuesday will be a VERY important appt. We’ll be at 32 weeks, so it’ll likely be a milestone for deciding if we do the shunt or not (shunts are rarely placed after 32 weeks). We have the same hopes as before –no additional fluid in baby’s chest (our top prayer), wellbeing and growth, smaller tumor (wish list, but research shows that some BPS’ have been reported to shrink up until 32-33 weeks gestation). I’m also hoping the amniotic fluid goes down a bit. Still at a 12, and the difference between Friday (9.8) and today is incredible (in a not good way) in terms of comfort. Most moms at this stage are a 5 or 6 so fingers crossed that baby starts swallowing a bit more! I'd basically love to fit into normal maternity clothes again.
We hope you know how much the support means to us. We can hardly talk to each other about it without getting teary eyed. We're hanging in there but definitely getting on each other's nerves because we handle our emotional pain differently. For the most part, we've been a great team, but it gets wearing at times (especially on DH's birthday) and it's hard to be a good partner when I can barely breathe, move, or sleep.
@libbberty I truly cannot fathom all that you have been through. You are one strong momma and wife!! My continued prayers that LO keeps practicing and get hiccups so you know they are practicing. Thanks for the update, will be thinking about you next Tuesday as you prepare to make such a large decision
@libbberty my baby is stubborn about practice breathing for the camera too. I'm glad yours showed off on the second try though, that's so reassuring. I'm definitely keeping you and your family in my thoughts. So glad for the update and that a lot of Tuesday's negatives turned into Wednesday's positives.
Glad things turned around at your second appointment, @libbberty, and thanks for the update! Hugs to you, and prayers that baby's lungs continue to grow!
@libbberty so glad to hear your updates. The hiccups are great! I have a camera shy bean too and it can be super frustrating. She likes to keep her head in my pelvis and not give them the brain measurements. So glad your LO decided to cooperate for the second ultrasound!
@libbberty thank you for the update. Glad to hear that Wednesday was better than Tuesday. Sorry the bad day was on DH's birthday. I hope he has someone he can talk to as well. It's hard because you both need support right now as you are in it together and you both have different needs. Maybe the hospital has a counselor or can recommend someone that you could both talk to separate or together as you go through all this uncertainty and rollercoaster of emotions. Y'all are in my thoughts.
I had a BPP with DD around 32 weeks and she failed by a couple points as well-they sent us to the hospital for extra monitoring and that was when she decided to cooperate! These silly stubborn babes. I'm so glad he/she passed yesterday though!
You and baby continue to be in my thoughts and prayers, especially with this big appointment coming up! Your strength is inspiring. Please continue to update as as you can, and know we're all here and rooting for you!
@libbberty thanks for this update! I'm glad baby perked up for the appointment on Wednesday-amazing what a little bit of sugar will do Continued thoughts and prayers for all of you. I hope you have a relaxing weekend!!
Jan '18 December Siggy Challenge: Christmas Movies
@libbberty I'm always excited to see an update from you. And I don't always comment after them because I'm sure you get enough notifications, but I'm so thankful to see how you guys are doing. I'm sure mentally this is so freaking tough for you guys. But I think about you and your family often and pray for his/her safety as well as yours daily, and I'm not normally the praying type.
Thank you for the update! Sorry to read about your discomforts, I'm sure that is tough on top of an already difficult situation. Hoping for more positive strides, hang in there!
Thank you all so much! I appreciate how you are keeping us top of mind with so many other things to think about! Feeling huge today (this fluid just sucks) but also feeling an active baby so trying not to complain.
Thank you for the update and glad baby is moving around to give you some peace of mind. You deserve that! Good baby!! I️ can’t even imagine how hard this is for you and dH and of course stressful on your relationship too. No two people process things the same way. I️ agree with kelk5 about each needing people to talk to and I️ hope you each have that. Of course you need to depend on each other and be a team but the more support the better. Still rooting and praying for you and LO. Hope s/he continues to stay active for you over the weekend and and FX for a great u/s on Tuesday!!
3 more days momma hang in there !! I know how uncomfortable you are my twins are both at 9.1 with their fluid with no explanation . I hope you and hubby can relax a bit and Tuesday bring the best news possible . You guys are so strong sending our prayers and positive thoughts your way
Appt went well. More details to come soon but I️ have the worst cold of my life and can barely even look at the screen. All is stable was the general takeaway, which is good news (relatively speaking).
Given the circumstances, we had a very good appointment. Baby passed the BPP very quickly, which was a relief after the week before. Our fetal surgeon stopped by to look at progress, and we also got to meet with him individually afterwards to look at the bigger picture. He felt that everything was stable or slightly improved. He made sure to show us lung tissue during our scan, so our hearts were pretty full coming out of the appointment. The left lung tissue is definitely smaller than it should be, but it is there and had room to grow since the fluid is gone. He did flag that upon birth, he’d want to do a scan to ensure that the esophagus wasn’t more compressed than they could see in the MRI. Basically, because the amniotic fluid isn’t decreasing, he wants to be sure the baby isn’t having issues with swallowing before we’d get to leave the hospital. He even started talking about the possibility of delivery at 39 weeks (way later than we expected) and said that he wants us to come in for weekly USs still, but doesn’t see a reason for us to come in 2x/week. Our MFM was actually okay with USs every other week as long as we have NSTs, but the surgeon shut that idea down (because he wants to be able to track the fluid in case we have preterm labor). The most exciting part, from my point of view, was that our surgeon felt like it was no longer a guarantee that the baby would have acute respiratory distress at birth – he feels like it’s a possibility, but not a for sure. Of course, we haven’t spoken to the neonatologist in a while, but this means there is a chance we get to HOLD THE BABY the day s/he is born. I’m trying to balance not getting too excited since there are so many unknowns…but the grief/loss of being unable to hold our child at delivery has been one of the hardest parts for us to consider emotionally. So, the thought that there is even a chance our baby won’t be immediately intubated and whisked away to the NICU within moments offers some hope. Again, baby would still need a surgery (called a resection) in infancy because these tumors do create “problems” if unaddressed, but it would not necessarily be at the time of delivery if those lungs grow.
We also received the preliminary amniocentesis results which indicated with certainty that baby has the correct number of chromosomes. And, my OB called me later to report that our baby is still BIG – in fact, it would be expected to be 9 lbs 9 oz at 39 weeks (so she is pretty skeptical we will get that far given that we also have the polyhydramnios). That blows our minds because Chris and I were not big babies. All in all, it was a good day – but it’s sure ironic how “good” is such a relative term. We left the appt and phone calls knowing that the next week would be a minor follow-up, and that we’d reconvene as a group at our 34-week appt to start brainstorming about delivery. The biggest drawback is that the cold from HELL gave us a run for our money for the next week.
This week – 33 weeks!
LO gave us an amazing anniversary gift today. We not only passed our BPP quickly, but our MFM (a different MFM than above) said she felt the heart was in a more centered place than the last appointment. In fact, she almost couldn’t believe it with her own eyes on the scans so she came in to double-check herself. She wasn’t as certain that the fluid in the chest hadn’t increased as our fetal surgeon, but she did think that even if it was increasing, it was negligible or not of concern. It’s been really interesting to see what each specialist finds to be obvious or important, and also to see how “bedside manner” varies extremely from doctor to doctor. The tumor size was stable yet again (damn tumor). I also had a lower level of amniotic fluid since last time (around a 9) which indicates baby “might” be swallowing. I guess it can also be because of baby’s position and many other factors so our MFM and tech weren’t that impressed, but it is a step in the right direction! She mentioned the possibility of scheduling delivery for 37 weeks, so we’re still really unsure of what mid-December to early January will hold. And even better, as we left the appt, we got our full amniocentesis report back and baby is “normal”. This was an incredible gift to receive on our big day.
Our only slight disappointment today is that the baby is in a very awkward position (jackknifed across my stomach and breech), but I’m determined not to worry about this at all for at least three weeks. Because there is so much extra fluid, baby still has extra space to flip around. Our doula gave us some tips of positions to try, so now that this god-awful cold is clearing up, we’re going to kick birth prep into high gear.
We’re praying for more stability for our next appt. The longer we go without fluid in the chest, the less likely we are to need another intervention before delivery. Before, an intervention would've been okay (because the shunt would be an actual treatment), but since that window has closed, we’d like to go without another needle tap at this point.
In other news, we’re pretty excited that our glider and crib are coming in the next week so this nursery can finally get set up. We’re gearing up for a productive Thanksgiving at home (sad to not see family, though) – I think Chris is all about encouraging any type of organization or nesting hormones from his less disciplined wife! Haha.
This Thanksgiving, we know what we’re grateful for this year, and it’s good doctors, good families, and good FRIENDS. Even the creepy internet ones
@libbberty I am SO SO happy for you and the news that you continue to receive. Your LO sure is a FIGHTER in every sense of the word, and look at that s/he is even impressing doctors at such a young age! Enjoy your Thanksgiving!
Re: Update - Possible TW
Jan '18 December Siggy Challenge: Christmas Movies
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
DD2 8.22.13
MMC 1.4.17 at 16w
Expecting #3, EDD 1.29.18
Here's our updates from Tuesday and Wednesday. Tried to trim a bit for you!
TUESDAY
Despite me trying to prep LO to give his/her dad the birthday gift of a lifetime today, we had a bit of a rough appt.
Good news:
Not so good news:
Overall, it was a rough morning for us and we’re feeling pretty discouraged, but hoping tomorrow turns it around. Not what we wanted for Chris' birthday!
WEDNESDAY
Thank you to all of you who prayed for us today after our discouraging day yesterday. You lifted us up. We went in today and our little one was ready to go after Chris made us a smoothie to get those sugars going. We passed the profile within 2 minutes! Baby has also “woken up” in terms of activity, so we’re feeling a bit better. Baby hiccups are adorable no matter what, but I was especially thankful to feel them when I learned it is a sign baby is practicing breathing!
We also got to see lung tissue briefly but didn’t get to differentiate right lung from left, or learn anything about lung size (disappointing for me that we can't get more info, but trying to stay strong). Our biggest challenge is making sure those lungs grow. The heart is still shifted to the right a bit, but not as significantly as prior to the procedure. At the end of the scan, baby showed us s/he could stick out his/her tongue and also opened his/her eyes and mouth a few times. We assume this was the little one’s way of showing off and reminding us that we don’t always get what we want the moment we want it – a sassy baby already.
We also got some news about the pleural fluid results (fluid from baby’s chest). Results indicated it is transudate fluid, and not chyl. This is the result we “wanted”. Transudate fluid is still not great (we don’t want ANY fluid in baby’s chest) because it indicates that the heart was likely pressured from the mass (resulting in the production of fluid due to heart failure), but chyl indicates there is a lymph drainage problem, which is often systemic – and we want this tumor to be an isolated problem. So, we’re glad the results came back for transudate because it provides a bit more evidence in favor of our diagnosis (and it is basically what we would have expected). We’ll know more when we get the amniocentesis results back (still a week to go) but this was a good start.
We now don’t go in until Tues for our next ultrasound. Although it feels far away, we’re looking forward to spending some time outside of the hospital. Hoping baby has normal amounts of activity until then so I don’t get too paranoid!
Tuesday will be a VERY important appt. We’ll be at 32 weeks, so it’ll likely be a milestone for deciding if we do the shunt or not (shunts are rarely placed after 32 weeks). We have the same hopes as before –no additional fluid in baby’s chest (our top prayer), wellbeing and growth, smaller tumor (wish list, but research shows that some BPS’ have been reported to shrink up until 32-33 weeks gestation). I’m also hoping the amniotic fluid goes down a bit. Still at a 12, and the difference between Friday (9.8) and today is incredible (in a not good way) in terms of comfort. Most moms at this stage are a 5 or 6
so fingers crossed that baby starts swallowing a bit more! I'd basically love to fit into normal maternity clothes again.
We hope you know how much the support means to us. We can hardly talk to each other about it without getting teary eyed. We're hanging in there but definitely getting on each other's nerves because we handle our emotional pain differently. For the most part, we've been a great team, but it gets wearing at times (especially on DH's birthday) and it's hard to be a good partner when I can barely breathe, move, or sleep.
Anyway...back to positive land...31 weeks + 2 days! Grow lungs grow!
You and baby continue to be in my thoughts and prayers, especially with this big appointment coming up! Your strength is inspiring. Please continue to update as as you can, and know we're all here and rooting for you!
Jan '18 December Siggy Challenge: Christmas Movies
J18 December Siggy Challenge: Christmas Movies
Together Let Us Seek the Heights
Appt went well. More details to come soon but I️ have the worst cold of my life and can barely even look at the screen. All is stable was the general takeaway, which is good news (relatively speaking).
back to trying to breath through my nose....
Jan '18 December Siggy Challenge: Christmas Movies
Last week – 32 weeks!
Given the circumstances, we had a very good appointment. Baby passed the BPP very quickly, which was a relief after the week before. Our fetal surgeon stopped by to look at progress, and we also got to meet with him individually afterwards to look at the bigger picture. He felt that everything was stable or slightly improved. He made sure to show us lung tissue during our scan, so our hearts were pretty full coming out of the appointment. The left lung tissue is definitely smaller than it should be, but it is there and had room to grow since the fluid is gone. He did flag that upon birth, he’d want to do a scan to ensure that the esophagus wasn’t more compressed than they could see in the MRI. Basically, because the amniotic fluid isn’t decreasing, he wants to be sure the baby isn’t having issues with swallowing before we’d get to leave the hospital. He even started talking about the possibility of delivery at 39 weeks (way later than we expected) and said that he wants us to come in for weekly USs still, but doesn’t see a reason for us to come in 2x/week. Our MFM was actually okay with USs every other week as long as we have NSTs, but the surgeon shut that idea down (because he wants to be able to track the fluid in case we have preterm labor). The most exciting part, from my point of view, was that our surgeon felt like it was no longer a guarantee that the baby would have acute respiratory distress at birth – he feels like it’s a possibility, but not a for sure. Of course, we haven’t spoken to the neonatologist in a while, but this means there is a chance we get to HOLD THE BABY the day s/he is born. I’m trying to balance not getting too excited since there are so many unknowns…but the grief/loss of being unable to hold our child at delivery has been one of the hardest parts for us to consider emotionally. So, the thought that there is even a chance our baby won’t be immediately intubated and whisked away to the NICU within moments offers some hope. Again, baby would still need a surgery (called a resection) in infancy because these tumors do create “problems” if unaddressed, but it would not necessarily be at the time of delivery if those lungs grow.
We also received the preliminary amniocentesis results which indicated with certainty that baby has the correct number of chromosomes. And, my OB called me later to report that our baby is still BIG – in fact, it would be expected to be 9 lbs 9 oz at 39 weeks (so she is pretty skeptical we will get that far given that we also have the polyhydramnios). That blows our minds because Chris and I were not big babies. All in all, it was a good day – but it’s sure ironic how “good” is such a relative term. We left the appt and phone calls knowing that the next week would be a minor follow-up, and that we’d reconvene as a group at our 34-week appt to start brainstorming about delivery. The biggest drawback is that the cold from HELL gave us a run for our money for the next week.
This week – 33 weeks!
LO gave us an amazing anniversary gift today. We not only passed our BPP quickly, but our MFM (a different MFM than above) said she felt the heart was in a more centered place than the last appointment. In fact, she almost couldn’t believe it with her own eyes on the scans so she came in to double-check herself. She wasn’t as certain that the fluid in the chest hadn’t increased as our fetal surgeon, but she did think that even if it was increasing, it was negligible or not of concern. It’s been really interesting to see what each specialist finds to be obvious or important, and also to see how “bedside manner” varies extremely from doctor to doctor. The tumor size was stable yet again (damn tumor). I also had a lower level of amniotic fluid since last time (around a 9) which indicates baby “might” be swallowing. I guess it can also be because of baby’s position and many other factors so our MFM and tech weren’t that impressed, but it is a step in the right direction! She mentioned the possibility of scheduling delivery for 37 weeks, so we’re still really unsure of what mid-December to early January will hold. And even better, as we left the appt, we got our full amniocentesis report back and baby is “normal”. This was an incredible gift to receive on our big day.
Our only slight disappointment today is that the baby is in a very awkward position (jackknifed across my stomach and breech), but I’m determined not to worry about this at all for at least three weeks. Because there is so much extra fluid, baby still has extra space to flip around. Our doula gave us some tips of positions to try, so now that this god-awful cold is clearing up, we’re going to kick birth prep into high gear.
We’re praying for more stability for our next appt. The longer we go without fluid in the chest, the less likely we are to need another intervention before delivery. Before, an intervention would've been okay (because the shunt would be an actual treatment), but since that window has closed, we’d like to go without another needle tap at this point.
In other news, we’re pretty excited that our glider and crib are coming in the next week so this nursery can finally get set up. We’re gearing up for a productive Thanksgiving at home (sad to not see family, though) – I think Chris is all about encouraging any type of organization or nesting hormones from his less disciplined wife! Haha.
This Thanksgiving, we know what we’re grateful for this year, and it’s good doctors, good families, and good FRIENDS. Even the creepy internet ones