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!
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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).
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