Complications Support Thread (TW)

akoros

This thread is to support anyone experiencing complications associated with their pregnancy. 

All conversation surrounding these issues should go here. The TW in the title applies for the whole thread. Please beware of reading ahead if you think you might be triggered by conversations about pregnancy complications and potential loss. 

Finally, remember that most of us are not medical professionals, and even if we were, it's always best to call/visit your doctor with questions or concerns. Feel free to ask questions and voice concerns, but please do not expect anyone here to be able to offer you anything but support.  The most important thing to do is to call your doctor. They can offer answers; we can offer support.

(Thank you to the Spotting thread for the introductory language).

akoros

I had my 12-week ultrasound and appointment on Friday. While the baby was alive (BP 151) and jumping around, unfortunately the ultrasound showed abnormal nuchal translucency. The doctor also said its heart looks a bit small. We don't have my NIPT results yet (miscommunication), but looking more likely than not that the baby has a chromosomal issue. She said that it's likely that I'll have a miscarriage, if we don't decide to terminate. I have an appointment on Wednesday with a specialist and probably a CVS the same day. 

I'm a bit calmer right now (probably numb), but we're heartbroken. I'm also terrified. I don't know how deal with the stress of waiting for a possible miscarriage. Every little twinge gets me worried. I feel terrible, but also don't know if I can give a child with these health issues the care he or she needs, if i'm even able to successfully deliver. I feel like the baby's gone, but it's not gone, it's still here. I know that the scan isn't definitive, but seems more likely than not that we have a problem. The doctor suggested we not tell our families just yet, probably so that we can decide for ourselves how we want to proceed in case of the worst. 

pourmeanothermocktail

@akoros Creepy internet stranger hugs. Know that my thoughts are with you. I can't at all know how you're feeling, but it sounds really hard. 

I hope your wait for information is short, and I sincerely hope that baby is in less danger than initially thought. 

mariabele

@akoros I'm so sorry. I can't even imagine going through this, though I know many many women do.

Your doctor is obviously much more knowledgeable about your particular situation, but I'm sharing this in case it's helpful: Just last week, my husband told me about a conversation he had with one of his coworkers after telling them I was pregnant. Apparently, this woman had an abnormal scan and had to do CVS/amniocentesis (I don't remember which). Turns out everything was actually fine and her daughter is now 4. She was saying this as a warning against getting too stressed out about any future inconclusive screens—although I can't imagine how anyone could not be stressed during the wait.

Sending you positive thoughts!

akoros

Thank you both! I'm not sure if she was so dire because the scan was that bad, or if it's because she does tend to be a bit direct/blunt and wanted to lead with the bad news so we could prepare ourselves and do what we need to (schedule follow ups, etc). I didn't get the actual measurements from her (admittedly, I was probably crying too hard). 

We'll just have to see what the CVS brings. I want to be hopeful, but there's also a part of me that's trying to detach and begin the grieving process to move on.

akoros

Question: is there anything I should do to prepare for Wednesday? I've been googling, so I know what the procedure is and all, but anything that wouldn't be standard advice? I have a consultation first, then a CVS scheduled afterwards. 

Another question (and I realize a doctor would be better to ask): regarding the probability, i'm a bit confused by what I've been finding online. I haven't dug into the specific medical papers, but in the same article it'll say that 2/3 of babies with an abnormal scan are actually fine, but the scan only has a 5% false positive rate (so 95% have a problem). That's a huge difference, am I missing something? 

alli392

@akoros I’ve never had a CVS done but I had an extremely complicated last pregnancy and had multiple procedures throughout. When preparing for a day like it sounds like your Wednesday will be, best piece of advice i have is to not forget to take care of the stuff at home before you go. 

It’s easy to forget. Make sure there’s a meal in the freezer-you may not feel like cooking (or eating) depending on the news. Make sure at least one of your extra support people knows what’s happening-you May be private and want to keep it between you and your husband (which I know your doctor recommended) but I spent a lot of time crying on my mom’s shoulder after calling her out of the blue (at least twice) to tell her something was really wrong. I’m so glad I did because she was nothing but supportive and my husband didn’t have the PTO to be there through everything. And finally-do anything to make the day a little bit easier that you can. Shower in the morning before you go. Grab a latte. Wear your favorite sweats. Bring a new and very distracting book. Those little things make big things easier. I read through what is now one of my favorite series while I was in the hospital and that distraction helped so much. 

I don’t know what to expect for you but I hope and pray it’s only good things!

akoros

Thank you @alli392! That's really helpful. I'm currently hiding from my mother (per doctor's advice) but we're very close so I have a feeling she knows something is up since I haven't responded to her questions. I think she'd be supportive, and actually could be helpful if we do need to make a choice because she worked with special education kids through much of her career.

That said, I am starting to get a (perhaps unfounded fear) that if the baby has trisomy 21 and we decide to terminate that I'll have "killed her grandbaby". She's pro-choice, so this might be my own guilt speaking...

alli392

That’s an understandable fear though! It’s more about how you’d feel though than her. I can’t imagine all the different rollercoasters of emotion you’re riding right now. 

That being said-I’ve had so many students with Downs that have been some of my favorites and I’m not a special ed teacher. Just a regular English teacher. I’m also not their parents though and can’t speak to the other complications they face. You won’t have to make any decisions until Wednesday and even then not til you’re ready! Nothing to do yet but wait for more info as hard as that is. I’m so sorry you’re in the middle of this! If there’s anything we can do on the board let us know!

kyrwyn

Seconding @alli392. Give yourself an afternoon/evening off to work through whatever you feel (positive or negative) and don't expect a lot out of yourself. It's nice to have a safe space/time to fall apart after a really stressful and emotional procedure. 

Also chromosomal abnormalities are nobody's fault so no one, yourself included, has any ground to tell you you "killed" their baby/grandchild/etc. It's horrible and unfortunate luck and not something anyone can control or choose. Please be gentle with how you self-talk while you're anxious and scared ❤️.   It's so much more important than we think in the moment.  FX for good news for you on Wednesday! 

akoros

Thank you again! I realize i'm probably fretting about Step 4 when i'm still between Steps 1 and 2. 

You've been extremely helpful, seriously. Just being here and giving me an outlet is useful, but also the insights and reassurance have been incredibly comforting and helpful. Thank you so much

kerco925

I lurk on the May forum and I saw read that someone just had a CVS and I she posted that the procedure itself wasn't bad or very uncomfortable.  Maybe you could reach out to her if you want to know more about what to expect.  

I am so very sorry that you are going through this and will be sending so many positive thoughts your way.  

maryanne2019

I’m so sorry @akoros.  My sister in law had a very thick measurement with her NT and was inconsolable.  The cvs turned out fine, and my nephew is now 10.  I hear you though on trying to detach, that’s usually my go to as well.  Expect the worst, but who knows I’m hoping for you that it turns out ok.  Sending you lots of good vibes.  ❤️

akoros

Thank you,  @kerco925! Will take a look at that forum. I think I hit my stress limit, because i'm not as scared of the CVS as I normally think I would be (I'm terrified of needles; also nearly passed out when I had a colposcopy years ago).

And thank you, @maryanne2019. When it comes to stuff like this I do tend to detach somewhat and anticipate thre worst, though secretly hoping for the best. It is reassuring to hear that it's not as definite as the doctor made it sound, so there's a chance.

lizanet

@akoros I am so sorry you are going through this. All you can do is hope/pray for the best and prepare for the worst. Hopefully it all goes well and also remember that legally and ethically the doctor has to inform you of ALL the possible outcomes. 

chichiphin

@akoros I'm in March BMB. lurking to say that I went through this last pregnancy. NT scan was over 7mm... my story didn't have a happy ending but I am a PM away if you ever want to discuss anything. **tw** We TFMR'd with a T13 diagnosis after our diagnostics concluded **tw**

akoros

Thank you, @chichiphin. I'm so sorry for your loss, I may take you up on your offer of a private discussion. Also, I didn't know the TFMR acronym, but in Googling it I found information on support groups. So thank you for that, those resources seem like they'll also be helpful.

chichiphin

@akoros there is a lot of support on reddit, babycenter, etc. if i can offer any advice it is to speak with a genetic counselor as well as your OB/MFM. OB/MFM's are not always trained in genetics. 

akoros

Good to know, thank you, @chichiphin!  I'm not 100% clear if they booked me with a genetic counselor, but was planning to call today to get some clarification on what exactly is happening on Wednesday so will ask (admittedly I was not in the best shape when I spoke to them on Friday).

lizanet

@akoros alot of times the MFM has a genetic counselor that you see prior to. I hope you got some clarification now that you are in a better state of mind

akoros

Yes, I called them yesterday so I know i'm scheduled with a genetic counselor followed by an ultrasound and CVS. Tomorrow will suck, but at least we'll be closer to some answers and a resolution. We're very fortunate to be in an area with a lot of great hospitals and medical staff, I looked up reviews for this practice and they have really good ratings.

Also very fortunate to have a wonderful support network. Work has been very understanding, my husband has been amazing (even though I know he's also devastated), and tonight I got up the strength to talk to my parents and they were wonderful. Not to mention the support of anonymous ladies such as yourselves. It's immensely helpful, and I can't thank everyone enough. 

kerco925

I'll be thinking of you tomorrow @akoros

lynkat

I’ve been following along and I’ll be thinking about you too @akoros ❤️ I hope everything comes back clear but if not, I’m so glad you have such a great support system around you! 

I’m joining the complications thread as well. My gallbladder situation has worsened so I’ve been referred to an MFM next week. My condition is serious but not an emergency as of yet. They got me in as soon as they could. My midwife has cared and advocated well for me. My hubs has been awesome. My parents and friends have been supportive and helpful in being on call to help with my boys. I’m mentally preparing for surgery. Thankfully it will only be minor if necessary. Lots of things to be thankful for. Still just nervous and worried about the baby. I initially only opted for the 20 week anatomy scan but I’m so ready to see my baby. 

chaos-and-coffee

Thinking of you today @akoros

runwmusic

Sending all the positive thoughts your way @akoros. 

hanshotfirst77

Thinking of you today @akoros

alli392

Good luck today @akoros!

@lyncat I see an MFM every other week for my lupus diagnosis. It’s actually so reassuring to know that you’re getting the highest standard of care. I hope it’s can heal on its own for you so you don’t have to stress as much! 

lynkat

Thank you @alli392 I’m hoping my body holds out until that appointment because I would definitely prefer to see the MFM than go to the ER. My midwife is going to run some more labs this week at my appointment to help us determine the urgency. It seems like there are several ladies on here who see an MFM and that is reassuring. I started researching the doctor I’m scheduled to see and she had really good reviews so I’m hopeful. 

kyrwyn

Thinking of you today, @akoros!  

@lyncat I hope you find a MFM you like working with as part of your care team.  I know several women who have had MFM-supervised pregnancies and they've said there are upsides, too, (like @alli392 mentioned). Hoping for the best for your health and your bub. 

lizanet

@akoros sending you love and positive energy today ! 

lizanet

@lynkat I have to agree with @alli392 there are totally plus sides to seeing an MFM doc. I get to see my baby and I get extra reassurance that everything is ok or if things need to be adjusted. 

My complication : 
I had preeclampsia with my daughter and I went in just for a screening and the NT scan. Results came back fine. I am actually at low risk for developing preeclampsia during this pregnancy. At 11 weeks my BP starting getting dangerously high and ended up in the ER a few day after meeting my MFM. They have put me on BP meds and 2 baby asprin and like 4 extra vitamins. But the side-effects from the bp meds are horrible(dizziness and headaches). The chances of the baby being small are higher, his or her placenta isnt functioning as well as it should be because of my high BP. Next appt is Friday and I am hoping it has improved. This can land me on bed rest early and I will go crazy at home. 

lynkat

Thank you @kyrwyn & @lizanet . So far my body is cooperating and I feel good. I’m eager to see what comes back from the labs my MW does this Friday. I’m doing everything I have read to do to take good care of myself in the meantime. 

@lizanet I’m so sorry to hear this! My appt is next Friday also. Hoping we both have good appointments ❤️ What was your experience with the ER doctor(s) if you don’t mind me asking? 

JessiBride

@akoros - Thinking about you today

@lynkat - My friend had to have her gallbladder removed during her last pregnancy.  Everything went smoothly and her little guy is 3 now.

JessiBride

@lizanet - I'm sorry, how stressful!  My BP was high at my last appointment.  They think it's white coat syndrome, but added in a blood test to check for early signs of PreE.

lynkat

Thank you for sharing a positive story! @JessiBride that’s encouraging ❤️

alli392

@lizanet that’s so scary! I’m glad everything is looking better. My MFM told me she wishes everyone would just take baby aspirin throughout their whole pregnancy because it’s so beneficial. I’m on it too and was last time as well. I’m sorry your other meds are causing so many problems!

akoros

@lyncat Surgery sounds so scary, but i'm sure everything will come out ok. I only have one MFM appointment to go off of, but the staff were really great. Even though it looks more and more like we won't have a happy ending I felt very well taken care of. I appreciated all the time they spent explaining things to us and answering my questions. 

@lizanet I'm so sorry you're having a bad reaction to your medications, that's always tough. My cousin had a lot of BP problems during her first pregnancy,  and I believe did have preeclampsia. Really scary, but she has a healthy daughter (soon followed by another, much easier, pregnancy).

lynkat

@akoros thanks for the encouragement. I’m glad you were well cared for but I’m sorry that the outlook isn’t looking positive. *hugs*

kyrwyn

Adding myself in here. I failed my 1hr glucose so badly that I get to skip the 3hr and go straight to managed nutrition therapy and (almost certainly) insulin. I'm feeling very sorry for myself because GD was so difficult for me last time and I wasn't fully prepared for the possibility that I'd have to start intensively managed eating/testing before I even got out of feeling nauseous or got our NIPS results back. 

lynkat

Sorry to hear that @kyrwyn I’m in the strict diet boat too so I am with you there. It’s been a hard adjustment but I’m getting used to it. Maybe we can start a healthy eating thread to share meals and snack ideas. Did you have to do insulin the last time you had GD?

kyrwyn

@lynkat Yeah, I had to take insulin at night. No matter how hard I worked at diet & exercise (and I literally worked my booty off last 3rd tri and was down 30lbs after delivery), I couldn't get my fastings to come down and my medical group won't do glyburide or metformin during pregnancy so it's insulin only. I did get to taper off on insulin at the end, but honestly unless you're tapering off to nothing it's still an injection so all that was was bragging rights. 

I'd be happy to share healthy meal ideas, but your healthy and my healthy might look really different for our restrictions right now.  TBH, I'll probably get scarce for my own sanity when people start talking up their ice cream and chocolate cake cravings later... because I would have killed for permission to eat an entire apple at once by the end of my first pregnancy.