kiwi / 706 posts
@QBbride: agreed. I'm going to look into it.
hostess / wonderful grape / 20749 posts
@MaryM: I seem to recall that you were diagnosed with the MFTHR gene mutation. Do you have any good resources to read about it. I have had 4-5 miscarriages and just found out our rainbow baby has severe spina bifida, including multiple brain abnormalities. We are TFMR this week at 18 weeks. I was never tested for the mutation with my loss panel back in January since I have 2 healthy boys, and it involves a lot of blood, so my OB said it was really unlikely. But now I'm wondering. Desperately looking for answers.
Yeah. So, I'm not a success story after all. Worst nightmare come true.
persimmon / 1269 posts
@winniebee: Been thinking about you all weekend. Hoping you get some answers soon.
GOLD / grapefruit / 4938 posts
@winniebee: I'm really sorry about your most recent prognosis.
I read a lot at mthfr.net, but I'm also skeptical and not sure the guy running it isn't also a total quack.
I had to push for the testing, but it wasn't any worse than the first panel I was offered.
I'm not sure how much of a difference it makes because my doctors aren't really all that aware of issues with it. Except one who said to supplement with methylfolate instead of folic acid. I take smarty pants prenatals.
Other than that, I started aspirin protocol myself because the benefits outweigh the risks. And I avoid folic acid fortified foods. I also had an inconclusive celiac test, so it made sense to give up flour (I also don't eat commercially made cereals, even if GF many are fortified, like Cheerios; white rice, orange juice, things like carnation instant breakfast)
It hasn't made a difference yet fertility wise, but my hormones are just getting balance due to treatment, so I'm not surprised I haven't gotten pregnant.
I also take different forms of B vitamins that are easier to process. My prenatal has methylated B12 and I take P5P instead of processed B6 to help with cervical mucous.
blogger / clementine / 984 posts
@winniebee: I haven't been on HB in forever and am just seeing this - I'm so, so sorry.
@MaryM: I did ask our genetic counselor about the mutation. She said yes it's possible but so many people have it and it's a non issue. But I guess because I've now had a child with a neural tube defect, the remedy would be to put me on a mega dose of folate (not folic acid in prenatal) for 3m prior to ttc, if we ever decide to ttc again (and she said this would be the same treatment if I had the mutation?) I will obviously follow up with OB and mfm on this.
@MrsDragon: thank you. Yeah, hell basically. I still have a hard time accepting that this is my life. I hope things are going smoothly for you.
clementine / 981 posts
@winniebee: I know this is thread has been quiet for ages, but I'm often not on hb anymore - I wanted to say hi and send virtual Internet your way. How are you doing? I don't know what I can say that will help, but just wanted to let you know that you're still in thoughts and the sun will come out again.
grape / 82 posts
Date of loss: No HB on our second u/s at 8.5 weeks (6/6); had d&c 6/23 after two weeks of waiting for it to happen naturally. Between those two weeks countless dr appts and tests to confirm..
How long are you waiting to TTC again: We were suggested to wait 2-3 cycles. I haven't had one yet but I am thinking of starting after my first.
Any kids: none..
How are you feeling? Sad and just trying to remember that we still have time. Our best friends are pregnant and due next month, going to their baby shower and being so overjoyed for their pregnancy while devastated for ourselves has been very difficult. I feel like everyone around us is pregnant, even those who don't want children or aren't in a good position to have them, which really hurts. Im just ready to start trying again and being able to work towards what we so desperately have wanted for so long..
@Makingbabyw: Sorry you're here. I tried right away after both of my losses (one natural and one D&C) and after the second I did get pregnant again the first full cycle after the D&C. I highly suggest making the decision that is right for you and where you are emotionally, physically, etc. My doc did warn that the uterus could have some bruising right after the D&C and I did have a small subchorionic hematoma at the beginning of this pregnancy that may have been related to the D&C. However, it did go away and I'm glad I didn't wait. You are supposed to be more fertile after a miscarriage because of the heightened progesterone levels. However, I highly recommend taking good care of yourself and making sure you are ready. I planned some fun nights out, made sure I was exercising, eating right, etc. and I felt like I bounced back from my second loss much faster than my first. Good luck to you and sorry for your loss.
@Nutella: Thanks for checking in. It's been hard. I feel like I've been to hell and back but am somehow still standing. Fortunately it's summer, the weather is great, and I have lots of distractions for the moment. Hope you are well!!
@Makingbabyw: So sorry you had to join this thread! After my first loss, when I had no living children, there was a baby BOOM in my circle of friends. Literally everyone was pregnant or had newborns, except me. It was so, so hard. Allow yourself the time and space to grieve - if you need to skip a shower? Do it. Your mental health is #1 priority here.
@Makingbabyw: I'm sorry you're having to go through this.
@winniebee: so much love to you.
cherry / 208 posts
Date of loss: My boy was diagnosed with anencephaly at our 12 week ultrasound. We decided to induce him early at 14 weeks on the 16th of March. He would have been due in a month on the 12th of September.
How long are you waiting to TTC again: We've been trying since I had my 6 week checkup. I think I just got my period today so I'm pretty upset.
Any kids: a 2.5 year old daughter who loves babies which makes me so sad for her.
How are you feeling? Really upset. I was praying that the bleeding I had was just implementation bleeding but I'm beginning to think thats less and less likely.
@Mrs Music: I'm so sorry for your loss. I had a natural miscarriage and a D&C for a blighted ovum and learned that it can take awhile for your body to regulate its hormone levels, which is incredibly frustrating because after a loss you just want to be pregnant again already. After my natural miscarriage, I did some bloodwork and my progesterone levels were low, etc. I did acupuncture, exercised, ate well, and otherwise tried to take good care of myself and eventually things fell back in place. Know you are not alone and that it may just take a little time. Hang in there!
@Mrs Music: I am so so sorry for your loss!!! The pain of having to make such a heart wrenching decision for your very much loved baby is so incredibly painful. We recently lost our third son to a neural tube defect (open spina bifida and hydrocephalus) - we found out at 17.5 weeks and delivered him early at 18.5 weeks on June 2. We've not started trying again (not sure if we will). I'm taking the high dose of folic acid now, hopefully to prevent another neural tube defect if we do decide to try again. Wishing you all the best! (PS - I am a member of a private Facebook group for women who have terminated for medical reasons. That group has been incredibly helpful to me as I grieve. Wall me if you would like the information for that group).
@winniebee: @Shantuck: Thanks.
I am part of two facebook loss groups specifically for Anencephaly and it has been a lot of help, particularly as not many people knew I was pregnant.
@Mrs Music: I can't imagine. I'm so sorry for your loss.
apricot / 425 posts
@Mrs Music: I'm so sorry for your loss. We also received a similar diagnosis (amniotic band syndrome prevented the skull from forming) at our 12 week ultrasound and TFMR at 13 weeks.
Wall me if you want to talk
I am 3 days DPO and just trying to take it day by day without over analyzing every little thing.
About two weeks ago now we got a card in the mail from my husbands Aunt, letting us know she was thinking of us and sorry for our loss. Really sweet...except for the fact that means my MIL proceeded to tell the whole family after we asked her not to. I am really besides myself with her in this whole journey to be honest. This is after she was explicitly told not to tell BIL (we wanted to ourselves), and she did. After she told our best friends... and all of her coworkers, and evidentally all of the extended family.
She has taken something incredibly painful for us and made it a public knowledge and not let us grieve in our own way. She has made it about her and how sad she is, without any concern for the impact of what she has done. Last week SIL brought her family, whom she had obviously told, and they proceeded to whisper about it loud enough we could hear AT DINNER...
DH and I have had some serious conversations at this point on what we will choose to tell them in the future and what they will not be privy to knowing. Thankfully we are on the same page and he is just as upset as I am. On top of all of the pain of our loss we are now having to <still> deal with family being beyond inconsiderate, hurtful, and using something really personal to do what feels like gossip
We went away over the weekend to commemorate our son's due date which was on the Monday. Two days before I found out I was expecting again. I'm 5.5 weeks now and I can not wait till I go for my dating ultrasound in two weeks.
@Mrs Music: Due dates are hard. Glad you were able to get away to commemorate it. Congrats on the new pregnancy! Pregnancy after a loss is really difficult but hang in there. Sending good vibes your way!
@Mrs Music: Gentle congratulations to you. I hope this pregnancy goes well for you.
@Makingbabyw: I'm sorry your MIL talked about your loss without your permission. While it is nice to receive support from family, I'm sure it was jarring if it was unexpected
We are coming around to maybe trying again. Not yet. We have a trip to Vegas scheduled in 3 weeks, then due date. I want to get past my due date next month and then see how we feel. I've stopped crying for my baby every day and it feels good to be emotionally lighter...but I also feel guilty about that.
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