Complications Support Thread (TW)

alli392 · December 2019

@akoros I’m still hoping for you!

@kyrwyn I’m so sorry you’re going through this! My dad is type I and I grew up eating meals that were diabetic friendly. But I got to eat what I wanted for snack later and he didn’t. He is solely insulin dependent so I really understand how hard this journey is going to be for you. I can’t believe it happened so early this time but I’m also really glad it’s not to you-as much as that adjustment is going to suck at least you have an idea of where to start. If we can do anything let us know! Happy to help share ideas!

akoros · December 2019

@lyncat Unfortunately it is what it is, these things happen. Aside from age (which isn't that bad, 34) we don't have any apparent risk factors so all we can figure is that it's just not meant to be.

Found out that the initial NT measurement from last week was 8mm. However, today we found out that it's not just behind the baby's neck, but it's entire body. We're not sure if that's a new development or they just spared us the details last week. Still need to wait on the actual results, but so far the signs aren't looking that good. Even if not chromosomal, with the cystic hygroma progressing there's definitely something wrong and a very high miscarriage risk.

If anyone opts for a CVS, here's my experience (in spoiler in case anyone finds it troubling). Definitely bring your husband or another support person with you, it would have been much harder doing it alone. Wasn't fun, but wasn't terrible. Now i'm just following doctor's orders to be a couch potato for the rest of the day, with my personal fuzzy heating pad (i.e. my cat, who is glued to my lap).

Beforehand you get an ultrasound, if for no other reason than to check on the position of the placenta so they can plan how to go in. Unfortunately i needed to have a trans-abdominal procedure, as the placenta was too far away from my cervix. You may need to empty your bladder some or all to adjust the position of your uterus (apparently mine is quite big and my kidneys work very well, so I had to do this a few times). They poke around a bit to orient themselves with the ultrasound first before inserting the needle. Right now is when it's good for someone to start distracting you. It hurt when the needle went in, not going to lie, but it wasn't excruciating. A bit worse than a painful blood draw, and the pain itself is similarly short. After that it's not so much pain as weird and uncomfortable, you can feel when they enter your uterus and can feel it moving around as they maneuver to get the tissue sample. Really hard to describe, but is more startling and disturbing than painful. Once they take the needle out there's no more pain or discomfort. Whole thing takes a few minutes, with the actual procedure taking about a minute (hard to tell, my husband was busy babbling about basketball to keep me distracted). A few minutes later I started to get mild cramps, which I still have (totally normal). Doctor asked that I take it easy for the rest of the day, but should be fine tomorrow.

akoros · December 2019

@kyrwyn I'm so sorry, I have a few friends who dealt with GD and it's so rough.

JessiBride · December 2019

@kyrwyn - I'm so sorry. I understand not being able to be around for those reasons.

kyrwyn · December 2019

@alli392 Thanks! I may hit you up for ideas at some point. The MNT program for GD at my medical group is far, far, far more restrictive than their type 2 or prediabetes control targets, so even though I have been managing my A1C fine for quite some time on my own without self-testing 4x per day it doesn't matter at all. There's also a minimum number of carbs I have to eat each day, so it's a bit of the whole damned if you do/don't fun. It made me so mad last time, too, because they kept talking to me about how big my baby was going to be, blahblahblah, and he was 5lb 13oz and teeny.

I can't even imagine what type 1 would be like. Hopefully they've made a ton of progress on CGM and pumps by now!

lizanet · December 2019

@lynkat I dont mind at all. All they did was monitor my BP for 2 hours to make sure it was stable and send me home with a script for BP meds .
The ER doctor and nurse just seemed to not know anything. My BP had come down some and wasnt in the dangerous range anymore. I have light veins so they did an IV & got blood with a infant needle(it was bent and hurt like hell). I kept having to explain myself to the Doctor who was NOT OB. I was asked questions that I had previously given answers to. It was horrible. Thankfully the next day I saw my MFM and she made everything better. I have been to the ER while pregnant before and this was just not a good visit. I normally end up seeing an OB if I end up in the ER, not sure why this time was different.

lynkat · December 2019

@lizanet thanks for sharing your experience. That’s what I’m worried about. I already have “white coat syndrome” due to many negative doctor experiences over the years. Part of me just wants to go in to the ER and get the ball rolling but the other part of me really wants to hold out for the MFM. My concern is that I’m fairly certain she will send me to a gastroenterologist and it may just prolong this process. Especially seeing her on a Friday with Christmas the following week - I’m wondering how likely it may be that I end up in the ER after that anyway because of timing. Discerning what to do in the waiting period is hard.

lizanet · December 2019

@lynkat honestly I would contact the MFM office and see if they can get you in sooner also explain to them the situation and see what their opinion or suggestion is. It wont hurt to try, I know I had to call a few times to get into a cardiologist office and ended up getting my appointment moved to sooner.

lynkat · December 2019

@lizanet thanks, you’re right. It’s worth a try at this point!

kyrwyn · December 2019

Just checking in. I finished my weeklong battle with my insurance about covering my testing consumables and am now officially compliant with my managed nutrition and testing requirements. Phew. Also I like my dietician a lot more than last time.

@lynkat @lizanet (everyone else who's here or lurking) -- how are you ladies doing? ❤️ of solidarity, and hoping things are well for you.

pregnancynumber10 · December 2019

I had a really heavy bleed at 12 weeks. I went straight to the ER and baby was fine with a nice strong heartbeat. A week later I had a follow up with the Dr and she wouldn’t tell me the cause of the bleeding, but I could see a big black area underneath the baby, which I can only assume is the cause of the bleeding. I only bled bright red for a day. After that I only had spotting, and the past couple of days I’ve had brown discharge. I’m on bedrest which is not easy with a house full of kids.

alli392 · December 2019

@kyrwyn I’m so glad to hear it’s going well! Keep us posted if we can do anything to support you.

@pregnancynumber10 I'm sorry to hear you had a scary bleed but glad to hear it’s resolving itself and that baby looks great!

lynkat · December 2019

@kyrwyn I’m glad you got that resolved and like your dietician!

@pregnancynumber10 that sounds so scary! I hope you get through bed rest quickly and can resume and pleasantly uneventful rest of your pregnancy.

As for me, I’m currently admitted. My appt with the MFM yesterday went well. She sent me to the hospital which I had mentally prepared for. What I didn’t mentally prepare for was still being here. Maybe I’m naive but so much waiting involved!! Lots of tests and more waiting. Hospital MFM has been wonderful. Still haven’t seen the GI doc but expecting to this morning. I haven’t been able to eat or drink this whole time which has me super cranky. DS2 came down with a fever the night before our appt and still isn’t feeling well. DS1 is worried about me. The boys are with my parents and I just want to get back to them. Hopefully we get this show on the road and I can get out of here today.

pregnancynumber10 · December 2019

@lynkat Have they told you when they are doing the gallbladder surgery? I pray that everything goes well. I know it’s hard to be away from your boys, but it’s awesome that you have family to help out.

@alli392 Bleeding is always scary, but it’s definitely nice to see baby moving around with a beating heart.

Bed rest really sucks for me right now because I have a ton of family flying in next week for my daughters wedding. My house is a disaster area because even though I have two grown kids living here plus my husband, and apparently none of them are capable of cleaning and organizing. 🙄

alli392 · December 2019

@akoros just checking in how you’re doing!?

@lynkat I’m so sorry they admitted you! On one hand, I really hope it leads to answers and the care you and your baby need. On the other hand, I’m so sorry because it’s no fun being in the hospital, especially when there are so many things I’m sure you’d rather be doing right now. I hope it works out soon!

akoros · December 2019

@alli392 Doing as well as I can, I suppose. It's not technically over, but I'm not a "June 2020 mama" anymore. I've been staying away from this board, but haven't had it in me to officially say goodbye just yet.

The CVS confirmed that the baby has T21. That, combined with the large and increasing cystic hygroma plus full body edema indicate an overwhelming probability that the baby wouldn't live to birth. In the rare chance it did, it would die soon after in the hospital. We can't see the point in delaying the inevitable and letting it suffer, so I will have a D&E later this month. I know this is a sensitive subject, but no debates please. This is the most difficult thing we've ever gone through, or hope to go through, and have made our decision.

kyrwyn · December 2019

@akoros Sending you love and support. I hope that you find peace after all of this and that you are well supported by compassionate and warm people wherever you are. Thinking of you. ❤️

akoros · December 2019

@kyrwyn Thank you so much. We're understandably keeping it quiet, but those we have told have been amazing, as have all the medical staff we've been working with. It's unfortunately something that does happen, and we're the unlucky 1 in 100 (or whatever the odds are).

chaos-and-coffee · December 2019

@akoros I’m so sorry. I am glad you are receiving support and hope that continues. Take care of yourself. ❤️

sheshe3386 · December 2019

Thinking of you @akoros

alli392 · December 2019

@akoros I’m so, so sorry for what you’re going through. We will miss you on the board but I so hope you can find peace in this terrible season of your journey. I hope, when you’re ready and it’s what you want, You can have the family you’re hoping for soon!

kerco925 · December 2019

I am so very sorry @akoros. Please take care of yourself and continue to surround yourself with those giving you the most support.

mariabele · December 2019

@akoros I'm so sorry to hear that. It's no one's decision to make other than yours.

hayhay2501 · December 2019

@akoros so so sorry. Sending you all the love!!!

thinkpositive2017 · December 2019

I’m so sorry, @akoros. ❤️

pourmeanothermocktail · December 2019

@akoros I'm so sorry. That's a really hard decision to make no matter what. Hugs.

bbluemoo · December 2019

@akoros I’m so sorry that you’re going through this. Sending you love and healing thoughts ❤️

lizanet · December 2019

@akoros so sorry you are going through this. I am praying for you. You made the best decision you could have made with the cards you were dealt. You have my love and support.

lizanet · December 2019

@kyrwyn I am doing okay. I have adjusted to the meds so the extreme dizziness and headaches have gotten a little better. Went and saw a cardiologist and my EKG showed some irregularities(doc says most likely from having Preeclampsia with my daughter) had an echo done and thankfully everything came back normal. I am still waiting on a blood pressure monitor to be approved by my insurance which is taking forever. I hate insurance.

akoros · December 2019

Thank you all, really appreciate the support.

@lizanet Glad your echo came back ok and the side effects are getting better!

kiki75 · December 2019

@akoros I am so, so sorry. It’s hard enough before you add commentary from others who have never been in your shoes. I hope that where you live provides compassionate access to care and that everyone around you is incredibly kind. This is just one of the many reasons I fight for these rights. I’m holding you & your family in my heart.

JessiBride · December 2019

@akoros I'm so very sorry you're going through this

lynkat · December 2019

@akoros I am so sorry you’re going through this. Hugs. You’ll be missed on this board.

Update: So my hospital stay took longer than expected but at least it’s all behind me now. Had an ERCP on Sunday to remove the gallstone blocking my bile duct and a cholecystectomy to remove my gallbladder on Monday. I got to come home yesterday. I’m so thankful to be home but I’m pretty sore and exhausted. It’s been a difficult 6 days for my DH and DS’s too. Trying to get back to normal after the chaos. Having a slow Christmas today as I try to heal up. Hoping for a boring and uneventful rest of pregnancy. Thanks for the love and encouragement. Hope you all enjoy the holidays!

akoros · April 2020

Hi everyone, despite not logging on (for obvious reasons), I've been thinking about you all a lot over the past couple of months. It turns out that I'm going to get another try at this, just found out that I'm pregnant again! I wanted to thank you all again for your support during my last pregnancy, and best of wishes for a safe rest of your pregnancies. I hope you're all doing well, coming into the home stretch!

kyrwyn · April 2020

Congratulations, @akoros ! I wish you a happy and healthy pregnancy.

We'll be thinking of you and your LO!

pourmeanothermocktail · April 2020

@akoros Congrats! I hope you have a very boring healthy pregancy!

kjack86 · April 2020

@akoros that’s amazing news! Congratulations and best wishes to you!

hayhay2501 · April 2020

@akoros that’s wonderful news!!!! Wishing you the happiest and healthiest pregnancy

JessiBride · April 2020

Congrats @akoros !!!!! What wonderful news.

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