Weekly Questions and Concerns: 7/9-7/15

KatieEl · July 2017

Uhhhh....question?

libbberty · July 2017

So, I guess I'll get this concerns thread going this week. I got my full carrier panel back from Counsyl and I'm a carrier for 2 (of 105) rare diseases. And not "good" ones - as if there is a "good" one. This is already a little scary, but on top of it I am dealing with the following:

DH is in Barcelona until Friday (getting wined and dined at a "training"), so he can't contribute his blood until Monday. Then, we have two weeks to wait for his results. And if his are positive for carrying, baby has a 25% chance of having one, so we would do an amnio at that point. Amnio for lots of reasons - first and foremost so LO could get specialized care from birth if needed, but also bc one of the variants of the diseases won't necessarily result in live birth. For one of the diseases, it's a 1/250 chance he would be a carrier, but for the other, the chances are a lot higher...I'm trying not to be fatalistic but wow, it's overwhelming. And I wouldn't have results back for amnio until mid-August. But regardless, I am ready to scream at DH for being gone yet another week. And it doesn't help that he's on a yacht one day, at the Sagrada Familia the next, etc. So darn spoiled.
We missed the window for a CVS (which I would prefer to an amnio) because the courier screwed up my sample to begin with, and then we had to go on that trip to Italy for a wedding (that I didn't want to go on). It might sound bratty but that was awful timing and NOT how I wanted to spend our vacation time or travel money this year. If we hadn't gone OR if the courier hadn't f-ed up, I could have had his results back by now and could have done the CVS.
When we were in Italy, the condo we wanted became available so we put in an offer, which was accepted. Yay, right? Not so much fun to look forward to when you aren't sure you'll have a viable pregnancy (and yes, I know we are never "sure" of anything, but GAH). Feeling like my PGAL self just can't catch a break, but trying to keep in perspective that so many people are going through this or something similar or far worse. Wanted to post a bump photo but I am worried I will jinx it all somehow. We have 5 business days to decide (unless we bail out during loan approval process) and I couldn't make a good decision right now if it landed in my lap - much less a long-term, expensive decision.
And TMI, I just am so sick of not being able to go to the bathroom! I've decided that some people get "hangry", some get crabby when they're tired, and me? I get crabby when I can't go to the bathroom.

Anyway, that is it, but my concerns are really not fixable and just manageable, I guess. Thanks for letting me vent and wallow in self-pity. Anybody who has gone through this crappy waiting period and has advice, I am all ears. Trying to perpetuate an attitude of gratitude but today I just am done (Maybe I should have put this under Monday bitchfest. I guess it sounds a lot more negative now than I thought it would!)

Side note: I spoke with the genetic counselor and she was very helpful. I learned about how the genetic sequencing has very low false positive rates, but the chromosome testing often has false positives (prior to confirmation via CVS or amniocentesis, because they diagnose). It was a fascinating conversation, and I guess I should just be thankful I got to talk to someone knowledgeable and kind.

PS @katieel that gif under your siggy is seriously the only thing that made me smile today!

dcamp18 · July 2017

@libbberty I hope you don't mind my asking what you tested positive for? I got the news that I tested positive as a carrier for Sanfilipo disease which myself not my doctor were familiar with. It seems that the chances my husband is a carrier are very slim, we will find out in about 2 weeks. I've never known anyone else to test positive for something like this! That's amazing that the genetic counselor was so helpful!

Dani0329 · July 2017

@libbberty
Just wanted to say it sounds like you have a lot on your plate, vent away! I will send a prayer up for you that all is well.

burnsmommy27 · July 2017

@libbberty I am in the waiting game as well. I did meet with the genetic counselor but did not find it helpful at all. I don't have much advice. Just wanted to offer support and say you are not alone.

jakobaby · July 2017

@libbberty sorry to hear things are a little crazy right now. I know the feeling. With DS, I found out I'm a carrier for cystic fibrosis. We had to get DH tested and wait, which is scary! He came back as a negative carrier for any of the major strands, however there was still that slim chance he could have been a carrier for a strand they didn't test for. Luckily, DS turned out fine. I hope that time moves fast for you and that things work out.

[Deleted User] · July 2017

@libbberty hugs

vent away, that's what we're here for!

clearlyclara · July 2017

@libbberty sucks you have to wait so long for test results! Fx for you and baby.... You both will be in my prayers. PGAL brain is not fun. Try to distract yourself and hopefully these weeks fly by for you.

sonalisharma · July 2017

I really dont know much about this, but just can offer a hug. Dont stress yourself and hope everyrhing turns out good for you. Plz keep informed. You will b in my prayers. Vent all your thoughts that will make u feel at ease a bit.

agalvarado · July 2017

My question is for STMs: my DD will be 24 months by the time LO arrives. Do I need a double stroller? How long do kids sit in strollers? I had imagined I would wear LO and push DD grocery shopping for example, but one of my mom friends has a 2 1/2 yr old and she's due next month, and she's getting a double stroller so now I'm second guessing myself. What do you ladies think or plan to do?

burnsmommy27 · July 2017

@agalvarado my DD is only 13 months and not walking yet so a double stroller is gonna be a must for us. I know my sister used her stroller until my nephew was almost 4 but that was at places like the zoo where he had to walk a lot.

[Deleted User] · July 2017

@agalvarado I don't think we'll be getting a double. Most likely I'll wear this LO everywhere and DD can either walk or go in the stroller.

libbberty · July 2017

Thank you ladies for the love. Now I could post in "why my pregnant self is crying" because you're just the best. Something about people in your same general situation that really helps. Thank you for the hugs, reassurance, and camaraderie. It's crazy to me how much the notes about sending hugs make it feel not so lonely!

@dcamp18 they are hypophototasia and maple syrup urine disease type 1B. Both are considered rare, but MSUD is tested right at birth in all 50 states so my doc had heard of it. I've also never heard of Sanfilipo. Fingers crossed for you guys.

@burnsmommy27 also sending you love! Sorry your counselor wasn't supportive. I'm not sure if you tested through counsyl, but if so, I could give you the name of mine (probably wouldn't help but wanted to offer just in case). I talked to her after my doctor recommended it - and it's all covered in cost of the testing.

@jakobaby that must have been so hard waiting, and then knowing it was probably okay but not knowing for sure!

@Dani0329 @schaze @clearlyclara @sonalisharma

ryannenikole · July 2017

@burnsmommy27 @libbberty sorry for the uncertainty ladies!

fishee333 · July 2017

@burnsmommy27 @libbbertyfingers crossed for both of you. My husband's brother tested positive for something not so good, so there's a chance for my husband to be a carrier as well. I forget what it's called, but it's similar to PKU I think. We have decided for now not to test since I'm likely not a carrier and because $$$ but we might change our minds. We could also test LO when she's born. It's definitely something in the back of my mind that will continually stress me out.

@agalvarado My daughter will also be 24 months in Jan and I'm having the same debate with myself! I'm sure a double stroller would be nice, but not sure if I'm going to get one. I just don't have much room for all this baby gear. Ah.

Peepster · July 2017

@libbberty and @burnsmommy27 I have no advice or experience. I just wanted to offer up some more hugs and positive thoughts.

cyanope · July 2017

Hugs to you both, @libbberty and @burnsmommy27.

@agalvarado, I bought I stroller for DD that I knew would convert into a double when the time came for this exact reason (DD will be 2 when this baby comes). I didn't want to buy two strollers! I got the Britax B-Ready.

burnsmommy27 · July 2017

@libbberty I just had my blood draw for the NT. The genetics counselor wanted to start with that before deciding what to do next. I am in a wait and see as the baby gets bigger situation so getting more testing done isn't really going to give me much answers. She did tell me that if the NT blood work "shows some kind of fluid leaking from the baby" we would have more of an answer as what to "look" at in US as the baby grows.

It's very frustrating because I want to be exciting and celebrate and announce this baby but I'm afraid if things don't go well. All our family know at this point.

Thanks for the love everyone!

libbberty · July 2017

@fishee333 I don't envy your situation, either! But hopefully your DH isn't a carrier. I did find out via my genetic counselor that often if there is a family history, that you can get DH checked for that one type instead of running the blood for everything. It could be less expensive or covered by insurance (but of course, you'd want to check). Not sure it would be valuable for you or not, but wanted to pass on my new learnings because I didn't realize how powerful the family history was with insurance, etc.

@burnsmommy27 fingers crossed for a quick return on the results. I can absolutely relate to the issue about wanted to be excited (and even bond with the baby!) and share the news but being scared. I listened to a podcast today that talked about prenatal fear vs anxiety...and how moms going through a typical pregnancy often experience plenty of anxiety about what might happen in the future, but when you're in a waiting situation like ours (and/or in a high risk pregnancy), you're dealing with the fear in the present and it's even more powerful for moms emotionally. As an often anxious person, I was kind of surprised to hear this but it kind of made sense. My anxiety is normally at the back of my mind but right now the fear is top of mind/all I can think about! Trying to distract myself and breathe. Sending you wishes for moments of peace during this difficult time.

libbberty · July 2017

Okay a more light question.

WHY does everyone seem to love the Uppa Baby Vista stroller so much? Is it really that amazing? And, does anyone NOT like it and why? I feel like after the stroller thread, I've been more cognizant of seeing what people near me use and 1/2 families in this Chicago neighborhood has an Uppa Baby, and 1/3 is the Vista.

BelhurstBride · July 2017

@agalvarado, @fishee333, I think it's one of those things you can wait on. You can do a single stroller and baby carrier for a long time, and by then you'll have a better idea of what's going to work best for your family.

EmilyLove25 · July 2017

@libbberty and @burnsmommy27 Just reading through these and want to send you two positive vibes. I too @libbberty am an anxious person, so I can only imagine how the uncertainty compounds the situation. Hoping you both get some reassurance soon. Hugs!

[Deleted User] · July 2017

@burnsmommy27 I don't know how I missed your first post! Hugs and positive thoughts to you too, momma.

burnsmommy27 · July 2017

@libbberty yeah I feel like I'm in such a catch 22 position. With DD I didn't want to get excited because of a previous loss. After her I got very bad PPD and anxiety. So the medication I was on when I got pregnant this time is to blame for all that is happening now. I'm just praying that I didn't inadvertently hurt this LO by trying to help myself.

Thanks @EmilyLove25 and @schaze

libbberty · July 2017

@ryannenikole @Peepster @EmilyLove25 Thanks for the love, ladies. Much appreciated to feel less alone!

@burnsmommy27

sending up prayers big time. Every momma deserves to keep herself healthy and to be excited, and I wish that you get the answers you're hoping for soon so you can let some of the worry go.

jaclyn0405 · July 2017

@libbberty and @burnsmommy27 positive thoughts to both of you and hugs! ❤️❤️❤️

kelk5 · July 2017

@libbberty and @burnsmommy27, thinking of y'all!

karacc18 · July 2017

@libbberty I am saving up for the Uppababy Vista (i started talking about it in the stroller thread....). My DS will be three at that point, but he is a runner, so i will need it for when I take both out at the same time, and he saw the skateboard on a vista when we were getting off the ferry last week and was all about it, so i feel comfortable with getting it for our family.

That being said, i haven't heard anything bad about the Vista from anyone that has it. I wish i would have gotten it in the first place instead of getting the 3 other single strollers we got when DS was born.

BelhurstBride · July 2017

@libbberty, my SIL had one and never found it to be all that awesome. She was annoyed with herself for spending that much money on a stroller.

Dani0329 · July 2017

I'm in need of some advice. The first part of my sequential screening is in 2 weeks. The results for us would only potentially change the hospital I deliver out and I would need to see a high risk doctor.

Will I find out all of his information out at the anatomy scan? I want the information and to be prepared but I am not sure that anything will change between week 14 and 20.

I will call the doctor tomorrow, looking for BTDT.

YarnistaBride · July 2017

@libbberty I just wanted to say that I completely understand and validate how concerning this can be. We just got through something similar to this where I tested positive as a carrier for Pompe disease (which is fatal and I had never heard of before) and then we had to wait two weeks for my husbands results (negative, thankful doesn't even begin to describe). I am not going to lie, I would have loved to keep an even keel for my baby, but it was almost impossible, I counted every calm hour as a win for her.

Staying as distracted as possible helped, I visited my family for the weekend and being in my hometown grounded me. I tried to stay focused on the next step, instead of five steps down. I also have anxiety so this was not easy to do, but it helped when I tricked myself effectively. I forced myself to keep working on her baby blanket and things like that, they made me feel like I was doing something positive for her even though I was worried.

Honestly, the waiting is so hard and there is no right way to do it, I never wanted anything more than my husband not to be a carrier, but if you feel up to it try to be your own best friend and forgive yourself for any fear or anxiety you feel. I sincerely hope for the best possible outcome for you and your LO.

trudytudy · July 2017

Hang in there @libbberty and @burnsmommy27. I had a scare at my AS with my last baby and it really was an awful helpless feeling.

I finally had my first appt today and the dr said my uterus felt big. She said it felt more like 16 weeks vs the almost 14 weeks I am. So that made me a bit nervous. I am not quite advanced maternal age yet but I've been feeling nervous. The dr said she could order me the QNatal test but I need to see if my insurance will cover this. I've passed on chromosome screenings with my first two babies but this time I'm seriously considering. Cost is the thing holding me back. Does anyone know anything about this test? Or is anyone else measuring a bit big for unknown reasons? My first baby was 9lbs 6oz at birth, just a big guy. Maybe another big baby?

About the double stroller. I have a graco side by side that we use multiple times a week. We use it mostly for walks around the neighborhood. My kids are 23 months apart and now they are almost 4 and 2. It gets heavy to push now that there is 75ish lbs of kid in there but I'm glad we have it.

libbberty · July 2017

@YarnistaBride thank you for the support and comforting words. It's nice to know I'm not alone. And I'm so glad your husband was not a carrier. I am working on trying to be in the present and not do the five steps ahead thing - good advice! I actually had so much anxiety about this and other PGAL stuff that I had to go to my OB today for a spontaneous US. Even keel was not even in the realm of possibility. I just needed to hear the heartbeat and it made me feel a lot better about LO, but the waiting game continues. My doctor was trying to be as reassuring as she could be without having the answers, which I appreciated. I hope I'm standing on your side of the situation in 2.5 weeks! But glad you are there now

@trudytudy thanks for the love, also! I wish I could provide comments on your situation but I have not been there. I haven't heard of that test - is it the standard chromosomal screening? I took the MaternIT and I'm happy to have the results (and would have wanted to know either way, but that's my personality type). I know tests are expensive, and it's hard to comment without knowing anyone's financial situation, but for me, it's always about what type of stress outweighs the other - but won't you also get some answers at 20 weeks via US? Good luck decision-making. If the QNatal test is like the other tests, it might be worth calling your insurance to see if one of the providers is less expensive than the others by chance (or in- or out-of-network).

Weekly Questions and Concerns: 7/9-7/15

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