Queer and Pregnant: April, May, and June - Page 38

[mami2mami]

Update: We need advice!!! We had an appointment on Saturday where they drew my blood to test for the range and possibility of down syndrome. The doctor called yesterday and I asked him if everything was ok his exact words were "everything is not ok!". He is out of town until next week and wants to see us on Friday because he wants an amniocentesis to be performed. After a very stressful day this did not help at all and now we are faced with the possibility of our child having down syndrome. It wouldn't matter to us either way because we have cared for many kids with special needs and are well equipped to handle one of our own. The stress of not knowing is very hard but we read up about all the risks of this type of test and it can even lead to miscarriage. I think performing the test just to know might be a little selfish because there is a possibility that the baby can be just fine and if I miscarried a baby for peace of mind I do not know how I will handle that.This test is usually performed to help parents make a more informed decision about terminating the pregnancy. We would not terminate regardless! Any advice????

Edited by mami2mami - 6/29/11 at 6:11am

[AmandaHope]

Oh, Mami, I'm so sorry you are having to deal with this very difficult decision.  What test exactly was it that you just got results back from?  It seems late for the NT scan.  I really can't give you any advice, since we haven't been through this and have very different experiences (no experience with special needs children, for example, on our end).  But it sounds like you've done everything right--get good information about the risks and potential benefits of the amnio and consider and discuss what you would do with whatever information it provided.  The question is whether the benefits of knowing  the baby's chromosomal status would outweigh the risks of the procedure.  It sounds to me like you feel that the answer is no.  If you are firm in this conviction,  reasonably confident that you could go through the rest of the pregnancy with this question in your minds, and confident that you have the resources and strength to parent a(nother) child with special needs, it seems that there would be no reason to do the amnio.  In that case, you'll have to be firm with your doc, who will certainly pressure you to do it.  But it is absolutely your right to refuse the test.  Hugs and best wishes to you and your family during this stressful time. 

[seraf]

I believe the 20 week anatomy scan would assist a downs syndrome diagnosis. If you don't need to know in time to terminate. My ob assured me that they make it more reliable than it used to be, but my cousin got a false positive on it a few short years ago. I think if you are worried about the risk of miscarriage, you could ask your doctor about an ultrasound. Because you're familiar with the difficulties you would face parenting a child with downs, you could easily wait and see. We were looking into adopting a child with downs syndrome right before I got pregnant, so I understand that not being the biggest fear. Big hugs Mami. It's hard getting bad news and being faced with hard decisions. Hopefully you can find what is best for you. And the baby coming to you is healthy, with or without a diagnosis. 

[mami2mami]

AHope- Thank you so much for the comfort. The Doctor scheduled an Alpha Fetoprotein test and is going off of those results. We do pretty much have our minds made up but I do know that not knowing is going to be very stressful. Sigh........

Seraf- Thanks for the advice! We will definitely ask about an anatomy scan instead. We are hoping and praying for no more bad news and hard decisions.

Edited by mami2mami - 6/29/11 at 9:50am

[AngelaM]

Mami, I am so sorry. How hard. One piece of information that might be useful is the false positive rate on the Alpha Fetoprotein test. Is this similar to (or part of) the "triple/quad screening"? My midwife disuaded me from doing that bloodwork when I was pregnant, because she said the rate of false positives was so high that it had people worked up (and steered into unnecessary amnios) for no reason. A quick google indicates that this might be similar, so if you know you're not going to terminate anyway, that would definitely weigh into my decision.

I second the suggestion of an anatomy screen. More importantly though is maybe trying to find some way to make peace with the uncertainties of pregnancy. The bottom line is that this is the exact same baby it was before you had this blood test. So many things are unknowable. Big hugs. I hope you find some peace around all of this.

AmandaHope, I went to a conference in New Mexico (we lived in Rhode Island at the time) when my DD was 3 months. My mom came to help out, and it was generally successful, though aside from presenting my paper and lunching with various friends, I wasn't up to sitting through many panels. I can't remember- are you a gender studies person? Is it NWSA you're going to? I went two years ago and loved it! (Side note on how many queer academic gender studies people there are on this forum...)

[qmama42]

Mami--I went through the same thing when I was pregnant with my daughter. I had a quad screen at qround 14 weeks and they called my during week 15 and told me that the AFP came back abnormal and wanted me to see the maternal fetal medicine group becuase my baby was at increased risk for DS. I had my MFM appointment at 17 weeks and the group I saw was great--they explained everything they'd be doing and were very understanding. They had us talk to a genetic counselor first for family history and then I had an ultrasound. MFM has more sophisticated and discriminating u/s machines so they are able to do scans much earlier than at the traditional 20 weeks. They made really clear  that they could tell a lot from the anatomical structures (they look for anomalies in the joint of 5th finger, heart, intestines, neck). My doctor said that all of her anatomy looked great and offered us an amnio if we wanted it. We knew that it would be an option before going in, so we spent a lot of time reading up on the procedure. In the end, we decided to do it, because we wanted to be absolutely sure and at least have the peace of knowing throughout the rest of my pregnancy. The actual procedure itself was fine and I only had minor discomfort, then I took it easy for the rest of the day. Of course, I panicked two days later and my regular ob/gyn was very gracious about letting me come in for a quick doppler check to make sure that the baby was fine.

I would be very wary of anyone who is urging you to go straight to amnio. Are they going to send you to MFM first? There is a lot the anatomy can tell you without something as invasive as an amnio. I found that my MFM clinic was extremely professional, compassionate and caring (probably because they are in the practice of dealing with high-risk cases from pregancy through birth). In then end, it sounds like you will raise your baby no matter what, so maybe you could just opt for the ultrasound. It all depends on how much you and your partner want to know and when. I'd really push for an MFM u/s before anything else. They should also be a very good support network if the baby does have DS. Best of luck with whatever you decide!

[AmandaHope]

Originally Posted by AngelaM 

AmandaHope, I went to a conference in New Mexico (we lived in Rhode Island at the time) when my DD was 3 months. My mom came to help out, and it was generally successful, though aside from presenting my paper and lunching with various friends, I wasn't up to sitting through many panels. I can't remember- are you a gender studies person? Is it NWSA you're going to? I went two years ago and loved it! (Side note on how many queer academic gender studies people there are on this forum...)

HI, Angela.  Yup, I'm headed to NWSA.  I've been a few times and really enjoyed it.  I always have certain issues/concerns with the way it is set-up and run, but that is the nature of the Women's and Gender Studies beast, I suppose, given how politicized it is.  I figure that if I can present at my own two panels, catch up with friends and colleagues, and maybe get to one of the keynotes, I'll be happy.  Remind me about your connection to gender studies? 

[AngelaM]

Originally Posted by AmandaHope 

HI, Angela.  Yup, I'm headed to NWSA.  I've been a few times and really enjoyed it.  I always have certain issues/concerns with the way it is set-up and run, but that is the nature of the Women's and Gender Studies beast, I suppose, given how politicized it is.  I figure that if I can present at my own two panels, catch up with friends and colleagues, and maybe get to one of the keynotes, I'll be happy.  Remind me about your connection to gender studies? 

Yes, I know what you mean re: the women's and gender studies beast. I have a PhD in American studies, and my focus is LGBTQ history. I went to NWSA while still a grad student and working at my campus Women's Center. Really enjoyed it, and particularly appreciated the feminist spirit of cooperation/collaboration that I found pervasive. So much less snarky and back-bitey than American Studies Association (which I know is still a million times better than MLA or the like...). I'm currently working for the federal government doing diversity work, but looking forward to returning to campus life at some point. My DP is also an academic, so we're always juggling the dual-career thing...

[amyfemme]

Amanda Hope:  You must be so glad you were able to get away fro a bit for your birthday (and especially before you LO arrives - which will NOT be this week!).  Your DP sounds like such a love!  I adore the idea of a birth affirmation.  What a thoughtful thing to write for you - I bet you shed some tears! 

MizYellow (and Amanda Hope!): Happy Birthday to both of you!!!I'm so glad you were able to cool those contractions, girl!  A migraine on your birthday?  Definitely not cool.  I've never had one so I can't completely relate, but when your head is down for the count It's hard to make damn near anything function, so I'm glad it's passed for you!  GREAT pic of you and Seraf by the way!  Such lovely tummies!  I can't wait until my DW starts popping out...I know we're really early in the game, but a girl can dream of the not-so-distant-future, can't she? 

Seraf:   Yay for a fun camping trip (minus the rain!).  One time, many years ago, my gf at the time and I packed up for a weekend camping trip, got all the way there, and discovered that we had the tent but no poles.  The park ranger let us sift through a box of left behind gear and we made do with a set of poles for the night.  We woke up so completely drenched and miserable that we packed up, drove home, and had a "camp out" in her living room...s'mores by the fire and all!  i was shocked to hear about the lack of bouyancy you experienced.  I would have thought it would be the exact opposite.  Shows you how much of a rookie I am at this preggo stuff, right?   I'm SO excited about your TWW...well...I know how torturous those TW are, but still....this is after all a lucky month for the queers, so let's go with that!  Sending lots of sticky fairy dust your way... 

Escher:  Good for you for taking your emotions in stride and yay!!! for your little flipper!  That's so exciting that your wife can feel it, too!  (I personally cannot wait for this!!!!!!)

Indigo: You're DP is getting wriggles, too!  Things seem to be looking up in the school/care category for your ds1.  That must be such a relief (or it must be starting to bring you some relief...or the promise of relief!) 

Library: Sounds like your conference was amazing!  What a treat to hear all of those fabulous authors speak!  Such a dream!  How's your little pumpkin doing?

Mami2mami: That must be so scary and unsettling to get news like that over the phone - let alone in person.  It really seems as though you and your DP are prepared for multiple outcomes.  It sounds like you got some excellent advice from our other preggo friends and that you are confident you will make the right decisions for your family.  Every child deserves the kind of love you and your DP are well-prepared to offer him/her. 

AFU:  DW is still in Dallas - she comes home Thursday.  She's had some nausea, exhaustion, and her breasts are crazy tender.  She called me and said, "You know how I always run down stairs, babe?  Yeah...ummmm...THAT'S not happening anymore!"  Yikes!  She's also tripping out a bit on the growth of her nipples and ummm...TMI alert...her clit.  She was shocked by that one, but I had read somewhere that this was normal (blood flow/hormones), so she she shouldn't be concerned!  Can't wait for her to get back so I can spoil her in person!  We're getting really excited to tell my mom and dad on Monday!  We're going to have the video camera out - we'll lie and say that we're trying to use it more during the BBQ and then whip it out again just before we tell them!  My mom will think it's me who is the preggo one at first, so that might be a little hard, but ultimately I know they'll be thrilled for us!  Then, it will be on to telling DW's dad and gf on the 11th when we make the trek down to San Diego for DW's bff's baby shower!  S.F. Pride with our donor and his DD was fun!  Although, walking around, the three of us felt like a straight couple!  Ha!  I've been keeping myself busy buying used preggo and parenting books - one of the ones I got was the Sears Baby Book that I had seen recommended on this list.  Thanks, y'all!  

AOTD #1: To vax or not to vax....or to delay.  DW and I are just STARTING to have this conversation.  We definitely feel like we want to make a very informed decision about this.  So, more reading for us!  

AOTD #2: Our To Do list is laughable as we're still in such an early stage!  But, so far, off the top of my head:  we want to get new carpet, majorly clean (of course!), take a Bradley class (most likely), get going on setting up the 2nd parent adoption so that's ready to go, start taking belly pics (I'll take the first one this week even though she's not showing...just for comparison, and then there are all the decisions about vaxing, sleep options, dipers....................ole!   

[AmandaHope]

Amy: You have so much to look forward to with this pregnancy--I hope all goes smoothly and that you get to enjoy each one of the many milestones to come.  Good luck telling your parents!

Here are a few of the photos that we had taken last week.  I haven't seen all of them yet, and many really don't look great at all (ie, I just look HUGE, not even necessarily pregnant--UGH).  But I do like a few, so I'll share those. 

[indigoscot]

hi all!!  mami, i think all the advice you've had so far is very valid.  my sister had the same thing with her third son (although the nhs didn't call her she just got a letter in the mail, ugh) and she did do the amnio.  thankfully everything was fine and we think it was a combo of slightly elevated numbers plus her being ama that triggered it.  he is a happy and healthy 2.5yo now.  :)

afu, it looks like we have found a great place for ds1 that has a slot for preschool AND pre-k.  we visited there today and the teachers and director were extremely nice and talked at length about their program and curriculum.  fwiw, since ds1 has been home with me i have been more strict than usual and he is responding well.  yesterday i bought him jumpstart advanced kindergarten and by last night he had grasped the concept of addition and subtraction - was even able to look at the screen where there were 3 orange bottles and 4 blue bottles and tell us there were seven.  he didn't even count them out loud.  anyways, he will hopefully start there next week.  in other news, the old daycare is trying to get naeyc and they sent all the parents a survey.  lmao, you can bet i will be brutally honest with that.

g

[Mizyellow]

Ahope- Love the pics!!  I think they are so sweet! I hate when pictures make me look super fat instead of super preggo. Or super fat AND super preggo. Sigh- rough life we lead ;) I bet you will have no issues making it to 37 weeks. Has your MW or OB starting checking you for dilation? I got checked yesterday and I am closed up tighter than a drum :( This is what happened last time, the only reason I went into labor at 39 weeks was because my water broke. How are you feeling? Are you waking up 400,000 times a night as I am?

Mami- I agree with everyone here, and am sorry that you have to deal with this and what seems like an insensitive dr. I would just wait until the ultrasound if you are not planning to terminate. I understand wanting to be prepared. I wouldn't terminate for downs by any stretch but I would need to feel prepared. Keep us all updated, we will be thinking about you!

Amy- The movements, and baby bump will be here sooner than you realize!  I def understand you DW concerns about her nipple growth, mine are rather frightening at this point, I call them national geographic nips. I am afraid the baby will be intimidated! hehe. I was thrilled about my clit growth. It sure made for easy orgasms! Enjoy ;)

Indigo- glad you found placement for DS. I am sure that is such a relief.

Just waiting and waiting. Started my EPO last night, I forgot how stinky  and messy that stuff is. Going to the pool today with the man, need to try to get some work done. I am really struggling with motivation right now. I don't really actually get a maternity leave just a few weeks that I am doing all my work from home and if I am struggling this much now I am not looking forward to attempting to get motivated when little one is here!

[pigirl]

M2M, the probability of having a child with Down's, given that you got a "positive" test results, is still only about 4%.  That's called the positive predictive value of the test (if you want to Google it), and it's pretty bad for this test.  So please try not to worry; maybe it's worth asking your doctor more about what the results mean, and your full range of options.

AHope, this is the week you had your DD, yes?  How are you hanging in?  My 34th week was by far the longest of my pregnancy, and it felt awesome to reach the end of it still pregnant this time!  You must only have one or two more 17P shots left now.  I hope you're doing well.

I'm far too behind to reply to everyone else, but I'm cheering you on as always. 

AFM, we reached full term two days ago, on Tuesday.  I cannot put into words how relieved I am (my son was preterm, at 34 weeks).  We're now cleared to give birth at the wonderful local hospital instead of the big NICU place, with the midwives we love.  Halleluiah!

[AmandaHope]

Mami: I'd be reassured by the info about false positives; are you going to push for a MFM early u/s?  I think that's what I'd do...  Hang in there!

Pigirl:  CONGRATULATIONS ON REACHING FULL TERM!

I'm so happy and relieved for you!  What a huge success--you must be thrilled.  Fingers crossed for an easy birth, in the place you choose, with the midwives you choose, and on your own terms (as much as possible, anyway).  I can't wait to hear your news once the time is right. 

Yup, this is the week DD was born, and I'm somewhat nervous but not as much of a wreck as I'd feared (though I've only just started the week...get to 36 weeks on Wed.).  I think I had a few contractions during the night that woke me up partway, but I figure that as long as they aren't coming at four or more/hour, I'm not going to worry about it.  Here's a paranoid question: do you ever worry that you'll go way OVERdue?  I've been so focused on avoiding induction after PROM that it only recently occurred to me that I could also face induction at 42 weeks.  The irony of that would be thick, for sure. 

[mami2mami]

We want to send our most sincere appreciation to all of you who have provided us with such great advice. We have come to a decision and decided that we will not be going ahead with the amnio. The shock of hearing there is a possibility that your innocent, unborn child may already be faced with many challenges before taking its first breath is very hard to encompass. Right away your mind shifts to all the things they might not be able to do. We are prepared to give our child everything they may need to live a full, happy life. No disability in this world will take away from the love and care we are capable of providing. Once again we want to thank you all for the support you have provided. You are all truly amazing women that we are so proud to have in our life as we go through this pregnancy. We will give an update just as soon as we see the Doctor next Friday. Best wishes to all!

[seraf]

Mami, thinking of you.  Every child faces challenges, if your child is born with downs syndrome, you just have more of a heads up about what they will be.  I still think it's fairly unlikely and wish you peace in your wait.  I had a bad fall when I was 3rd trimester with Ari.  She quit moving for several hours (very scheduled kicking baby) and I was terrified for her.  When she was finally born she was so unlike the other newborns I had experienced (very limp, hard to learn to nurse/take a bottle, didn't open her eyes for weeks, then tortacolis on top of that) that I was sure she suffered brain damage from the fall.  It took me a year to realize that she is just a different kid (several months behind her brother on every milestone but walking - but I have come to learn that he was just early, she is the normal one, btw).  Every child is different.  They all face challenges.  There are kids with downs syndrome going to college these days.  Many hold jobs and live a much more independent life than what we saw growing up.  I know about the risk of false positives.  I hope you're among them.  In the slim chances that you're not, it's still all going to be ok.

Amy, I have totally forgotten important parts of my yurt before, too.  We made due but rain ends it all.  How come I didn't get a bigger clit?  Where's the fun in nipples that enter the room a minute before me?

Indigo, yay for a school problem being resolved.  How is your DPs nausea?  You holding up ok working from home?  Changes like that are really hard sometimes.

Yellow, mmmm EPO.  I never touched the stuff, but can't you get it in gel caps?  No maternity leave sucks.  Like your new pic, too.

Pigirl, congrats on reaching full term!  That's super cool.  Good luck on getting a great birth.

AmandaHope, you are adorable and the pictures look pregnant, not huge.  But I have taken enough bad pictures to say, blame the photographer!  Haha, they can make anything look good if they want to.  They know all about taking pictures at different angles to get rid of double chins and what light is flattering and all.  None of us looks all that attractive sitting down.  Not the thinnest among us.    I never worried too much about going late, but I'm not a worrier (if that wasn't obvious).  It would be ironic, tho.  Did your mom ever go late?  Do you have any reason to think you might?  It's all good.

Starling, you almost done with work?  Feeling better?  Did you tell your family and everyone you're expecting a boy?  Are they super excited?

Escher, 2ez, How are you girls doing?  We're really coming along.  

AFM, life is good.  Work is weird, they're all worried about me All The Time.  They are worriers.  

I have been seeing tons of rabbits lately, which makes me happy.  I haven't seen so many rabbits since my last TWW.  

I gained a bunch of weight on the trip, went from 148 to 152, but I think it was all the salt because I'm back down to 148 3/4.  LOL.  I do need to gain some weight!  I haven't quite gained a pound in the last 3 weeks, bringing my total to 11 3/4 pounds so far.  I really want to gain about 35 pounds because I was scary thin after Osh was born (27 pounds) and I was a bit overpadded after Ari (45 pounds).  35 pounds seems perfect.  

Not a whole lot going on otherwise.  I thought I was getting a UTI and I have been drinking lots of watered down straight cranberry (mmmmmmmm).  All seems better on that front.  

Still not sleeping much.  

I did a kick count, just for fun.  The baby is kicking at least half of every hour.  Sometimes she will nap for 45 min - an hour and then kick for the next 2 hours.  That is way more than I had realized.

Big to-do list today.  Need to get my squash off all my other plants in the garden.  Silly crazy squash.  But man I've been enjoying me some nice fresh salads.  

Only have 2 days off work because I took 6 last week for the trip, then my, "give them another chance" OB appointment is the next day off work.  I need to order a fetoscope and do some research.  Oh, maybe get some labs done like they asked (or maybe I'll just ask which ones they're actually attached to.  I'm pretty sure state law says I need HIV and drug tests.  LOL.  It just kills me to pay hundreds of bucks to take a test I already know the answer to.  Might do some comparison shopping.)  

Here I am, totally rambling when it's already July and there's probably another thread up.

Edited by seraf - 7/1/11 at 4:46am