So glad to see that things are stable at this point. I am sending so many positive thoughts your way. Thank you for keeping us posted whenever you can. You and your family are in my prayers right now.
Ladies, I’ll post an update with details tomorrow (everyone is stable) but wanted to say thank you so much for the kind words and prayers to the ladies who’ve posted and checked in. It means so much to me.
Here are my updates for those of you interested. Sorry it's kind of long.
TUESDAY
After a very uneventful weekend (highlights included Christian building a closet in the nursery, a meal out with friends, a kick ass care package, and lots of birth book reading), we went in Tuesday for our repeat US and tumor was the same size (didn’t increase – good!), still no fluid around stomach (YAY), and similar amount of fluid in chest (not what we were hoping for). Baby had grown quite a bit in two weeks! We’re in the 97th percentile with an almost 5 + 1/2 lb baby at 30 weeks! We also got some images of the baby’s face and baby is adorable.
We spoke with our team and decided the best course of action was to do a thoracentesis, which means we’re having the fluid in the baby’s chest drained. We should be able to get a peek at baby’s lungs as fluid is removed from the chest area and maybe even see how they respond to having more space immediately following. It's less invasive than the shunt and we’re hopeful that even though the baby can’t get rid of the chest fluid on his/her own, that he/she can maybe prevent it from returning with some help. Truthfully, it’s likely to return (the drainage is not often effective as a one-time treatment), but if the return is gradual, it gives the baby’s lungs some time to grow. If the return is quick, we have evidence that the shunt is needed and that the associated risks are worthwhile. Because this is SO rare, there are no studies or cases that we can really use to know what to expect as a mid-term result. All we know right now is that it’s important that fluid is not present at delivery because it complicates the care plan in the NICU. And it’s the right time to act because we have a big baby with too much extra amniotic fluid, so preterm labor without intervention is a possibility (and this wouldn't be a typical preemie situation so it's extra important to make at least 34 weeks).
It’s an outpatient procedure with less risks than the shunt, but there are still minor risks, so we appreciate prayers. They’ll give me local anesthetic on my stomach and evaluate the best location for the drainage. Baby will receive a muscle relaxer. I’ll get an IV and the procedure will be in L&D in the odd case that we have to deliver (they estimate less than a 1% chance). They’ll use a "small" needle to do all of the drainage (about half the size as the shunt needle) – hopefully it can all be done with one entry, but it will depend on baby’s position. At the same time as the drainage, we’ll do an amnioreduction to remove some of the amniotic fluid to decrease risk of premature labor. This fluid also will likely return but a short respite would even be nice.
We’ll also be sending in the amniotic fluid for testing and will be adding a genetic counselor to the care team. We have no reason right now to believe there is a genetic cause – it is most likely an isolated birth defect as we’ve thought all along – but it’s the right thing to get diagnostic info.
The steps after the procedure would be to get an US and see how the fluid is progressing and lungs are behaving – hoping to see the lungs and for either no return of the fluid or a very gradual return. If the return is very gradual, we might just need to repeat this before delivery. In that case, baby would still receive an operation to have the sequestration “resectioned” after birth, but delivery wouldn’t be as scary if there isn’t fluid in baby’s lungs.
WEDNESDAY
We had the procedure and it was successful (at least temporarily). It was pretty painful for me but we pushed through and were able to remove 1.5L of fluid from me (YES, TWO WINE BOTTLES OF FLUID – and we should have gotten more in retrospect), 50 mL from baby’s chest, and get some fluid off to genetic testing. Baby put up quite a big fuss for the first hour (requiring two pricks - also due to the damn anterior placenta which always gets in the way) but finally cooperated at the end to give the doctors a “dream window.” It was a very long day. I still have polyhydramnios but it’s not as extreme as before, so I’m carrying only a few weeks ahead rather than 10 whole weeks, at least for now.
Highlights of the day included: 1) standing in line at triage (stork was busy yesterday!) and being larger than EVERY mom in the entire waiting room – no joke; 2) seeing baby’s heart move to its correct position and getting a peek at his/her lungs right after the procedure! Very uplifting, and 3) my apple juice after the procedure. 12 hours of not eating or drinking.
Lowlights included: 1) bawling my eyes out after the procedure - I literally could not stop crying as soon as we were alone, and 2) when they were doing the amnioreduction, I swear the anesthesia did not work on that side of my body. It was miserable (and took 20 minutes to drain, while I'm sitting there worried about the baby the whole time). Every time the doctor moved AT ALL, I thought I was going to go into labor (severe cramping).
We go in tomorrow at 1pm to evaluate baby’s biophysical profile and to see if any fluid has reaccumulated. We’re really hoping that none has at this point – even getting a week without fluid would be a big win for LO. No decisions would be made tomorrow unless we saw signs of an emergency. We have another follow-up Tues and will likely check in with care team after that one to see if we move forward with the shunt, another thoracentesis, or more monitoring.
Here's our 3D image of our little fighter - sorry, I have ZERO clue how to resize and it's not a priority for me to learn right now, lol. Will accept tips for future if anyone has them!
I hope you all know how extremely grateful I am for your little notes. It feels good to check in here occasionally and see people checking up on me. Assuming we have some okay news tomorrow, I may even jump back in a thread or two.
@libbberty LO is adorable. So glad the procedure was a success. Hopefully both you and baby get some relief for a bit. Thanks for the update,we're all thinking about you!
Wow that's so much you both have been through. You must be feeling a little bit of relief to have to much fluid taken out. Continued thoughts and prayers for you guys ❤ hugs
@libbberty Wowza! What a busy week for you guys already. I've been thinking about you guys a lot and hope things progress in the way you want and need them to.
Oh my gosh! Look at that sweet face! Happy to hear the procedure went well and continued thoughts and prayers for all! You are already an awesome Momma and LO is one lucky little fighter.
@libbberty I cannot express how happy I am to read your update that your sweet babe continues to grow at a good rate and that your care team was able to come up with a possible solution for the fluid that is less invasive for both of you. I'm sorry it was painful, but it does sound like it was a successful procedure. And I love the sweet face picture of your fighter. Continued thoughts and prayers for all of you!
Jan '18 December Siggy Challenge: Christmas Movies
I'm crying over here! So glad the procedure went well, @libbberty. And look at that face! So beautiful! Continuing to pray for you and your family, that baby's lungs can quickly develop, and that the fluid stays away for as long as possible.
Look at that beautiful face! So glad the procedure went well, you and baby are still in my thoughts and prayers-sending lots of creepy internet love your way!
@libbberty All the prayers, and positive vibes your way for you and LO. Lo's a fighter for sure, and everything will work out fine as you wish it to be
Oh my goodness! Normally I'm not a fan of the 3d ultrasound pics (UO?) but that is one dang cute baby! Thank you for the update, I've been thinking of you all day and I'm so glad to hear that the procedure went well. FX for good news on the fluid front!
DS1: Nov. 2013 DS2: Jan. 2016 DS3: Dec. 2017 Baby #4 on the way!
@libbberty I'm so glad the procedure went well! Enjoy the relief of having less fluid mama! It's hard enough being pregnant, let alone having additional stresses and complications. You and LO are amazing fighters! I'm so glad to see your updates here.
Joey 06.05.2010, MC Jan 2014-EDD 09.11.2014, Aurelia 08.24.2015 (lost twin ~12 weeks), Ectopic Loss Feb 2016, EDD 01.03.2018
@libbberty so happy to hear the procedure went well, sorry it was painful for you. You are a wonderful mom already and LO is fortunate to have you! Love the picture! Y'all are in my thoughts.
Oh gosh it sounds like a hard but good day. A friend of mine had to have fluid removed several times during her pregnancy (she had twin-to-twin transfusion I guess that made one of her twins suck up the other one's fluid) and she said it was both very uncomfortable and simultaneously a huge relief. I hope you get some relief from it, even if it's just for a while!
@libbberty unbelievable what you both have been through this week! Happy to hear the procedure went well and prayers that the fluid stays away as long as possible. And hands down that picture is the best, so beautiful! Xo!
Oh my goodness! Normally I'm not a fan of the 3d ultrasound pics (UO?) but that is one dang cute baby! Thank you for the update, I've been thinking of you all day and I'm so glad to hear that the procedure went well. FX for good news on the fluid front!
DS1: Nov. 2013 DS2: Jan. 2016 DS3: Dec. 2017 Baby #4 on the way!
@libbberty so glad the procedure went well. That picture is a face of perfection! Such a sweet face. FX for good news on the fluid that was drained. Glad you are feeling better also. Hopefully things stay positive for you and the family. Keep up the fight!!!
I’m so glad the procedure went well !! Praying it gives you at least a weeks or so so baby can develope . Did they also give him you a steroid shot to help the lungs develope ? Not sure if that would be helpful or not in this situation . I am so glad they are monitoring you so well and have a team in place
Our US revealed a pretty small amount of fluid in baby’s chest (still a pleural effusion, but far less than what we started with). We were lucky that our amazing surgeon happened to be making his rounds nearby at that time (what an incredible guy). He estimated it was about 10% of what was there before. He also felt the heart was less shifted to the right. We saw right and left lung tissue! So, we overall had a very good appt. The amniotic fluid (around baby) was also slightly down, indicating that baby is probably swallowing some of it. (of course, this is me trying to be positively focused...our first 30 min with the tech was actually not positive because she wasn't aware of our situation/context and had some kind of dumb comments...nice woman but she primed me to be all negative. Just wanted to share that it wasn't all as rosy as I'm trying to recreate the narrative now).
We go in Tuesday for a repeat US and we’re hoping to have the same results – which would mean LO had almost a week for those lungs to grow.
Some of our friends have asked what this means/what things look like for the future. We’re still taking everything one day at a time – the tumor’s size is always considered in relation to baby’s gestational age. Any decision about treatment vs delivery will be weighed in respect to those factors, so we don’t know much about what the future holds still. We do know the baby will need surgery either immediately following delivery or a few months after (all depends on those lungs and first breath), which is scary to us, but the doctors aren’t worried about that. As of now, we’re trying to work through our (enormous) birth course so we’re ready to give this baby a stress-free delivery whenever it’s needed. Best case scenario is that baby grows around that tumor, there’s no more fluid accumulating, and we deliver with the NICU team ready and waiting to help baby breathe (this would be the jackpot to pray for).
Emotionally, the whole uncertainty is starting to get wearing but we're trying our best to embrace the positive news. Just struggling at odd moments.
Hope you’re all having great weekends and staying warm wherever you are. Thank you for the check ins and prayers. We’d appreciate more prayers for our Tuesday appt for those of you still sending love our way
@ecolton01 yes, I did have the first round of steroids so far. They think it could have helped that first week. We are waiting to administer another round until we know more about when I might deliver. It looks like for a second round, best timing is typically within the 7 days prior to delivery (for lung lesions) - and they don't want to just keep giving round after round. But thankful for that first round, because it basically either helped baby kick that fluid in his/her stomach or at least gave him/her some strength to keep growing despite that big tumor.
Hooray for more good news! Thank you so much for keeping us updated. I'm constantly keeping you and your LO in my thoughts and hope for nothing but the best!
So glad to read that you and baby had some positive gains! Best wishes and I look forward to reading more positive updates! I'm sure it's a stressful situation, hang in there. And that us pic of your baby is sooo cute!
Re: Update - Possible TW
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
Will check in tomorrow! Hope you all are well.
Here are my updates for those of you interested. Sorry it's kind of long.
TUESDAY
After a very uneventful weekend (highlights included Christian building a closet in the nursery, a meal out with friends, a kick ass care package, and lots of birth book reading), we went in Tuesday for our repeat US and tumor was the same size (didn’t increase – good!), still no fluid around stomach (YAY), and similar amount of fluid in chest (not what we were hoping for). Baby had grown quite a bit in two weeks! We’re in the 97th percentile with an almost 5 + 1/2 lb baby at 30 weeks! We also got some images of the baby’s face and baby is adorable.
We spoke with our team and decided the best course of action was to do a thoracentesis, which means we’re having the fluid in the baby’s chest drained. We should be able to get a peek at baby’s lungs as fluid is removed from the chest area and maybe even see how they respond to having more space immediately following. It's less invasive than the shunt and we’re hopeful that even though the baby can’t get rid of the chest fluid on his/her own, that he/she can maybe prevent it from returning with some help. Truthfully, it’s likely to return (the drainage is not often effective as a one-time treatment), but if the return is gradual, it gives the baby’s lungs some time to grow. If the return is quick, we have evidence that the shunt is needed and that the associated risks are worthwhile. Because this is SO rare, there are no studies or cases that we can really use to know what to expect as a mid-term result. All we know right now is that it’s important that fluid is not present at delivery because it complicates the care plan in the NICU. And it’s the right time to act because we have a big baby with too much extra amniotic fluid, so preterm labor without intervention is a possibility (and this wouldn't be a typical preemie situation so it's extra important to make at least 34 weeks).
It’s an outpatient procedure with less risks than the shunt, but there are still minor risks, so we appreciate prayers. They’ll give me local anesthetic on my stomach and evaluate the best location for the drainage. Baby will receive a muscle relaxer. I’ll get an IV and the procedure will be in L&D in the odd case that we have to deliver (they estimate less than a 1% chance). They’ll use a "small" needle to do all of the drainage (about half the size as the shunt needle) – hopefully it can all be done with one entry, but it will depend on baby’s position. At the same time as the drainage, we’ll do an amnioreduction to remove some of the amniotic fluid to decrease risk of premature labor. This fluid also will likely return but a short respite would even be nice.
We’ll also be sending in the amniotic fluid for testing and will be adding a genetic counselor to the care team. We have no reason right now to believe there is a genetic cause – it is most likely an isolated birth defect as we’ve thought all along – but it’s the right thing to get diagnostic info.
The steps after the procedure would be to get an US and see how the fluid is progressing and lungs are behaving – hoping to see the lungs and for either no return of the fluid or a very gradual return. If the return is very gradual, we might just need to repeat this before delivery. In that case, baby would still receive an operation to have the sequestration “resectioned” after birth, but delivery wouldn’t be as scary if there isn’t fluid in baby’s lungs.
WEDNESDAY
We had the procedure and it was successful (at least temporarily). It was pretty painful for me but we pushed through and were able to remove 1.5L of fluid from me (YES, TWO WINE BOTTLES OF FLUID – and we should have gotten more in retrospect), 50 mL from baby’s chest, and get some fluid off to genetic testing. Baby put up quite a big fuss for the first hour (requiring two pricks - also due to the damn anterior placenta which always gets in the way) but finally cooperated at the end to give the doctors a “dream window.” It was a very long day. I still have polyhydramnios but it’s not as extreme as before, so I’m carrying only a few weeks ahead rather than 10 whole weeks, at least for now.
Highlights of the day included: 1) standing in line at triage (stork was busy yesterday!) and being larger than EVERY mom in the entire waiting room – no joke; 2) seeing baby’s heart move to its correct position and getting a peek at his/her lungs right after the procedure! Very uplifting, and 3) my apple juice after the procedure. 12 hours of not eating or drinking.
Lowlights included: 1) bawling my eyes out after the procedure - I literally could not stop crying as soon as we were alone, and 2) when they were doing the amnioreduction, I swear the anesthesia did not work on that side of my body. It was miserable (and took 20 minutes to drain, while I'm sitting there worried about the baby the whole time). Every time the doctor moved AT ALL, I thought I was going to go into labor (severe cramping).
We go in tomorrow at 1pm to evaluate baby’s biophysical profile and to see if any fluid has reaccumulated. We’re really hoping that none has at this point – even getting a week without fluid would be a big win for LO. No decisions would be made tomorrow unless we saw signs of an emergency. We have another follow-up Tues and will likely check in with care team after that one to see if we move forward with the shunt, another thoracentesis, or more monitoring.
Here's our 3D image of our little fighter - sorry, I have ZERO clue how to resize and it's not a priority for me to learn right now, lol. Will accept tips for future if anyone has them!
I hope you all know how extremely grateful I am for your little notes. It feels good to check in here occasionally and see people checking up on me. Assuming we have some okay news tomorrow, I may even jump back in a thread or two.
J18 December Siggy Challenge: Christmas Movies
Jan '18 December Siggy Challenge: Christmas Movies
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
Together Let Us Seek the Heights
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
Our US revealed a pretty small amount of fluid in baby’s chest (still a pleural effusion, but far less than what we started with). We were lucky that our amazing surgeon happened to be making his rounds nearby at that time (what an incredible guy). He estimated it was about 10% of what was there before. He also felt the heart was less shifted to the right. We saw right and left lung tissue! So, we overall had a very good appt. The amniotic fluid (around baby) was also slightly down, indicating that baby is probably swallowing some of it. (of course, this is me trying to be positively focused...our first 30 min with the tech was actually not positive because she wasn't aware of our situation/context and had some kind of dumb comments...nice woman but she primed me to be all negative. Just wanted to share that it wasn't all as rosy as I'm trying to recreate the narrative now).
We go in Tuesday for a repeat US and we’re hoping to have the same results – which would mean LO had almost a week for those lungs to grow.
Some of our friends have asked what this means/what things look like for the future. We’re still taking everything one day at a time – the tumor’s size is always considered in relation to baby’s gestational age. Any decision about treatment vs delivery will be weighed in respect to those factors, so we don’t know much about what the future holds still. We do know the baby will need surgery either immediately following delivery or a few months after (all depends on those lungs and first breath), which is scary to us, but the doctors aren’t worried about that. As of now, we’re trying to work through our (enormous) birth course so we’re ready to give this baby a stress-free delivery whenever it’s needed. Best case scenario is that baby grows around that tumor, there’s no more fluid accumulating, and we deliver with the NICU team ready and waiting to help baby breathe (this would be the jackpot to pray for).
Emotionally, the whole uncertainty is starting to get wearing but we're trying our best to embrace the positive news. Just struggling at odd moments.
Hope you’re all having great weekends and staying warm wherever you are. Thank you for the check ins and prayers. We’d appreciate more prayers for our Tuesday appt for those of you still sending love our way