I'm sorry that you and your family are dealing with this stressful situation. You have such a positive vibe throughout your post. Keep that positivity, you and LO are both fighters, and will need that positivity to help carry you. Keep us posted, I am hoping that LO will continue to make the necessary improvements, and keep developing. *hugs*
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
Sharing a quick update from Monday's appt. We had another ultrasound and went over the results with our MFM team and fetal surgeon. The good news:
There was still no fluid in the stomach (i.e., no hydrops), which means the Thursday finding was not just a fluke- it means that the baby has processed some of this fluid on his/her own!
The baby’s heart and vitals were strong, indicating baby is not under stress
We’re already 4 days farther along than the original surgery
The mass has not increased in size and there was not more fluid in chest
I’ve lost a few pounds, so I’m less swollen, and I had a good few hours today with not feeling like I’d explode (they’re gone, but they were lovely while they lasted)
The not so good news:
Tumor was same size and same amount of fluid in chest (pleural effusion)
Heart is still shifted (but it will be as long as that tumor is present) – this is ultimately okay, just not ideal
Amniotic fluid increased slightly (so my belly is even bigger)
My blood pressure and pulse has been all over the place, so I’m being looked over for Mirror Syndrome (extremely rare, but this entire situation is rare, so we need more info before we can rule out)
We made the decision with the team that the best course of action at this time is to monitor, so I will be going in again on Thurs morning to evaluate the baby’s vitals and look at the fluid in the baby’s chest. It sounds like I’ll be going twice a week until the situation either evolves (for better or worse), OR until there is enough fetal growth that we need to intervene. The most likely treatment plan at this time is still the shunt/surgery, but we want to give the baby the opportunity to resolve this on his/her own in the chance it’s possible (because there are risks associated with the surgery) – or maybe baby will grow, but tumor will not, so lungs will get some space. There is a balance between best time for shunt placement, gestational age, and baby position that we are going to have to navigate over the next couple weeks. I’ll keep sending updates as we get them. In the meantime, we could use prayers for baby’s strength (pray baby swallows some of that fluid) and my blood pressure and pulse to calm down.
Then, yesterday, on the way to the hospital to get a blood draw (to check for Mirror Syndrome), I started having stroke symptoms. I ended up staying in the hospital about 10 hours, getting a neurology check, and getting an MRI. MRIs are no fun, but especially not while pregnant. LO did not like the sounds and I could tell he/she was distressed, so it was a crappy hour. Luckily we all made it through and I'm home now, hoping to spend one day out of the hospital before tomorrow's appt. My preliminary MRI results were normal, which was great, and LO had a strong heartbeat and signs of wellbeing all day on the monitors.
Thank you ladies for the love and support. Your comments and concern really help me feel less alone. We appreciate every single prayer and positive thought sent our way at this time.
@libbberty Thank you for the update. I'm so glad to hear that LO is processing some fluid! It sounds like a delicate balancing act in figuring out when to do what, but you are so strong and it sounds like your care team is on the right track (for the moment). So scary about the stroke symptoms! Thinking of you and praying for you and your LO.
@libbberty so, so many thoughts, prayers, and hugs to you, LO, and your family. I cannot begin to imagine everything you're going through. You are one strong mama!
What a good amount of good news! I'm so sorry you were having stroke symptoms - I can't imagine having an MRI while pregnant! Prayers for baby to continue getting stronger and for wisdom for the doctors to know when to schedule surgery vs waiting/not doing it!
6th cycle of meds/iui combos = BFP!! - EDD 1/21/13 Born via emergency c-section - 8lb, 19.75 in, 100% stubborn
BFP Chart 8 cycles of unmedicated trying = BFP!! - EDD 1/10/18 *Waiting for Baby Eags 2.0*;
Sending all kinds of hugs and positive thoughts your way! Thank you for the update. Take care of yourself and LO as best you can. We're all here for you.
Ahh thanks for the update @libbberty! I will be sure to send all the prayers for LO and most definitely YOU! Take care of yourself as best as you can, you and baby are SO strong! XO!
Thanks for the update. I'm glad they are monitoring y'all so closely. I hope LO keeps making progress and that you are able to have some moments of relief from all the worry. Thinking of y'all.
@libbberty It sounds like baby is strong and determined. I hope you're able to get some rest through this also. Still thinking of you and your family and hoping you have the support you need to get through this.
@libbberty I am glad that your update is good news and that your sweet babe is continuing to grow and process the fluid. I hope your next appointment continues in this way. Still thinking of you!
Jan '18 December Siggy Challenge: Christmas Movies
Love, hugs and prayers!!! Thank you for the update! So scary about the stroke symptoms. I hope baby continues to progress well and that your BP and swelling get more controlled!
Hi ladies, here's our update from Thurs last week. Thank you again for the love. Sorry for the delay (I forgot who I updated and didn't).
Thursday, we had our previously scheduled ultrasound and our tech was just lovely. We found out that the tumor and fluid in the chest was about the same size as before (definitely no increase), amniotic fluid was also about the same/non-significant increases, and there was still no fluid in the stomach. We considered this a big win, because again, we are hoping baby “grows around” the tumor so it’s lungs have some space to grow inside. Also, I’ve been SO uncomfortable (measuring full-term, shortness of breath, etc.) for the last two days that I was worried we'd have more fluid on our hands. Baby scored another 8/8 on its biophysical profile, which means he/she (pretty sure it’s a he!) isn’t under stress. Our tech took some 3D images for us to try to cheer us up, but Baby D covered his/her face right before we got to see it. It was still pretty adorable to see his/her nose and lips, though. We also got to see his/her little legs crossed like s/he was relaxing at a pool (which is pretty spot on since the baby has an entire “swimming pool” to himself right now). We then headed to triage to get another blood draw and made it home by early afternoon. Small win.
Our next steps are to repeat the ultrasound on Tues (with a growth ultrasound so we can evaluate how much baby has grown in two weeks). Then, we’ll meet with the fetal care team to discuss next steps regarding intervention or not. We can really only speculate what may or may not happen at this point (likely we’ll proceed with shunt unless situation improves), but we know what we’re still hoping for – continue to see no fluid in baby’s stomach, less fluid in baby’s chest, a smaller tumor (would be a miracle, but does happen for some cases), and less polyhydramnios (amniotic fluid). Just one of these would be a big win, so please target your prayers this direction (NO hydrops, less fluid, healthy heart). I’m also hoping for a “good” day in terms of discomfort – the last few have been very difficult. I've definitely grown and I'd assume I'm measuring almost 40 weeks at this point based on what's expected.
I'll update again on Wednesday. Hope you all have great weeks. Hoping I can become more active once I understand prognosis better (right now with everything in limbo it's just too painful to invest more energy into pregnancy and baby stuff).
@libbberty thank you for the update, I'm glad to hear you're still getting updates that are promising. Take care of yourself, and don't invest your limited energy into things that stress you.
Re: Update - Possible TW
Sharing a quick update from Monday's appt. We had another ultrasound and went over the results with our MFM team and fetal surgeon. The good news:
The not so good news:
We made the decision with the team that the best course of action at this time is to monitor, so I will be going in again on Thurs morning to evaluate the baby’s vitals and look at the fluid in the baby’s chest. It sounds like I’ll be going twice a week until the situation either evolves (for better or worse), OR until there is enough fetal growth that we need to intervene. The most likely treatment plan at this time is still the shunt/surgery, but we want to give the baby the opportunity to resolve this on his/her own in the chance it’s possible (because there are risks associated with the surgery) – or maybe baby will grow, but tumor will not, so lungs will get some space. There is a balance between best time for shunt placement, gestational age, and baby position that we are going to have to navigate over the next couple weeks. I’ll keep sending updates as we get them. In the meantime, we could use prayers for baby’s strength (pray baby swallows some of that fluid) and my blood pressure and pulse to calm down.
Then, yesterday, on the way to the hospital to get a blood draw (to check for Mirror Syndrome), I started having stroke symptoms. I ended up staying in the hospital about 10 hours, getting a neurology check, and getting an MRI. MRIs are no fun, but especially not while pregnant. LO did not like the sounds and I could tell he/she was distressed, so it was a crappy hour. Luckily we all made it through and I'm home now, hoping to spend one day out of the hospital before tomorrow's appt. My preliminary MRI results were normal, which was great, and LO had a strong heartbeat and signs of wellbeing all day on the monitors.
Thank you ladies for the love and support. Your comments and concern really help me feel less alone. We appreciate every single prayer and positive thought sent our way at this time.
29 weeks and 2 days!
I use Hypnobabies! http://www.hypnobabies-store.com/link.cgi?affiliateID=472
J18 December Siggy Challenge: Christmas Movies!
EDD: 1/6/2018
Eva Jane: 7/23/2014
Born via emergency c-section - 8lb, 19.75 in, 100% stubborn BFP Chart
8 cycles of unmedicated trying = BFP!! - EDD 1/10/18
*Waiting for Baby Eags 2.0*;
DS2: Jan. 2016
DS3: Dec. 2017
Baby #4 on the way!
Jan '18 December Siggy Challenge: Christmas Movies
Thursday, we had our previously scheduled ultrasound and our tech was just lovely. We found out that the tumor and fluid in the chest was about the same size as before (definitely no increase), amniotic fluid was also about the same/non-significant increases, and there was still no fluid in the stomach. We considered this a big win, because again, we are hoping baby “grows around” the tumor so it’s lungs have some space to grow inside. Also, I’ve been SO uncomfortable (measuring full-term, shortness of breath, etc.) for the last two days that I was worried we'd have more fluid on our hands. Baby scored another 8/8 on its biophysical profile, which means he/she (pretty sure it’s a he!) isn’t under stress. Our tech took some 3D images for us to try to cheer us up, but Baby D covered his/her face right before we got to see it. It was still pretty adorable to see his/her nose and lips, though. We also got to see his/her little legs crossed like s/he was relaxing at a pool (which is pretty spot on since the baby has an entire “swimming pool” to himself right now). We then headed to triage to get another blood draw and made it home by early afternoon. Small win.
Our next steps are to repeat the ultrasound on Tues (with a growth ultrasound so we can evaluate how much baby has grown in two weeks). Then, we’ll meet with the fetal care team to discuss next steps regarding intervention or not. We can really only speculate what may or may not happen at this point (likely we’ll proceed with shunt unless situation improves), but we know what we’re still hoping for – continue to see no fluid in baby’s stomach, less fluid in baby’s chest, a smaller tumor (would be a miracle, but does happen for some cases), and less polyhydramnios (amniotic fluid). Just one of these would be a big win, so please target your prayers this direction (NO hydrops, less fluid, healthy heart). I’m also hoping for a “good” day in terms of discomfort – the last few have been very difficult. I've definitely grown and I'd assume I'm measuring almost 40 weeks at this point based on what's expected.
I'll update again on Wednesday. Hope you all have great weeks. Hoping I can become more active once I understand prognosis better (right now with everything in limbo it's just too painful to invest more energy into pregnancy and baby stuff).
ETR last name
Jan '18 December Siggy Challenge: Christmas Movies