Anyone have a Prothrombin Gene Mutation??

[Erin83]

Hey Jen, congrats on being 13 wks with twins!! Thats great. When you say 80 2x a day, do you mean 80mg 2x a day? I guess I take 70mg 2x a day. Why do they keep upping your dose? Luckily everything having to do with blood work has come out well every week, then every other week, and now once a month. I'm gradually not having to have blood work done all the time. I'm not pg yet, so all of that could change. I don't have any advice for you on the amnio and m/c. I wouldn't have any idea on what to do. I can understand your being a bit nervous about being 41 and pg with twins. Take care and keep us posted!! Erin

[Aubie]

Jen- so happy to hear all is going well witht he twin pg. I know with you being 41 that doing an amnio is a concern- this is a personal decision & make sure you discuss the risks with your peri- since I'm only 33 & we've had so many losses (including the ones from this pg) I really didn't want to do either CVS or amnio & my peri was in total agreement. Wow, can't believe they have you on so much lovenox- I'm just going to be doing 40 once a day. I'm 37wks exactly today. On weekly appts but the peri's office I go to doens' do cervical checks until 38wks- so if no natural labor or imminent signs of it at my 38w2d appt they will induce between 38w5-39w1d (1/18-21) which is the longest they said they would let anyone go with a clotting disorder & since so far all has gone well since the 2nd tri (still has lots of fluid around her & the placenta & umbilical cord show no signs of clots forming) they are trying to let me go as far as they can. Of course the induction timeframe is over the MLK holidays so that is why they haven't given me an exact date to go for yet

Erin- I hope you get pg soon- sounds like they have gotten your b/w & dosage at a good level

[Erin83]

Aubi, sounds like your pg is going well!! Congrats on getting this far. Yes, they have gotten everything right where they want it. After pg, I will go back to the pill form of the blood thinner, then it will be all over again trying to get my protime where they want it, all those blood draws, oh well, I'm so used to being poked, it doesn't really matter anymore. My peri told me that she is going to induce me at 37wks, they don't want me going into natural labor. It will be worked around my OB's schedule so he will be the one to deliver me. I think its nice that they will do that this way I stick with one doctor who knows me. I don't know at this point if I would do an amnio, I wouldn't think so unless the doctors have some concern somewhere. So everybody take care and keep us posted. Aubi, will you post pics when your new daughter is born??? Good luck with everything!! Erin

[Aubie]

Erin- sounds like your peri has a good plan. I'll definitely post pics when Naomi makes her appearance.

[Erin83]

yeah they sure do have a plan!! Its nice to know though, now I just can't wait until I can actually participate in that plan!! Right now my peri and hemo have been talking to me about what my plan is if we don't get pg by next summer because I will have been on Lovenox for a year at that point. They don't want to keep me on it forever. Thats the only bad part. Anyway, I can't wait to see your pics of your new daughter once she enters into the world!!! Erin

[Aubie]

Erin sorry I didn't post over here but her is my post from the military board(I combined a few posts)...

Here is our long story....1/8 when DH got home from work I showed him
how swollen my feet, hands & face were so he decided to go to my 1/9 (even though the previous evening he had said due to an evening trainer he wouldn't be able to due to the CO). So 1/8 I made sure we took all of the hospital bags for all 3 of us just to be on the safe side. Good idea since my protein levels were over 4000 at my OB appt & I was sent straight to the hospital to be induced. Hooked up to magnesium sulfate immediately. Unfortunately, I was 0 dialated, 0% effaced. 1st the tried Miso (?) to chemically soften my cervix & to try induce me. HAH, typically it starts working & they can insert another pill every hrs & it gets the job done but instead I was one of the very few that has reaction to it & instead it just didn't due anything to my cervix but caused me to start have strong contractions every 2-3min...so no more Miso. Then they decided to
'manually' dilate me with a folley catheter with a ballon full of fluid placed inside my cervix & then a weight was placed on the other end that would hang off the bed to 'pull' on it (felt like I had a bowling ball trying to break free, oh did I mention both these things were done by the main night dr who was very rough & I felt like I was being raped both times- she did let one of her resident try to do the catheter 5 times who couldn't get it in even though I kept telling them the were hitting the wrong area inside & they needed to angle more towards my hinny to get in my cervix-
since with so many IF testing & IVF I had some experience with this-they finally checked me inside & said 'oh, your right' & got it in). We were told that this manual dilation typically would 'fall out' in ~12hrs & I would be dilated to
5cm. Well, by this time I was hooked up to 9 meds plus an epidural & barfing
/dry he aving- so when it fell out I was only 3cm dilated. 24hrs after it fell
out I was only at 5cm with no progression in 12hrs so an emergency C-sect was done.

Naomi Marie was born at 5:29pm on Jan 11, 2008, weighing in at 6lbs 3.6 oz & 19in long, head 13 1/4in. She was very lethargic due to all the meds I had been on so over the next 12hrs our BF attempts were just that- she would latch on but not suck. So then I had to start pumping & give her what few drops of colostrums I could get & wipe it on her gums. After 12hrs of this she had lost over 10% of her body weight so we had to add formula to her feedings via a syringe/catheter that we would put in her mouth while she was latched on to try to get her to learn to suck at the breast. Unfortunately she did get jaundice & had to go under the bili lights for the next 24hrs so then she was really sleepy & not at all interested in trying to even suck at the breast. The next day we did have 3 good BF sessi ons out of our 8 attempts.

Oh, DH described my water weight gain from the severe pre-E as me looking look a cabbage patch doll with only dimples for where my feet, ankle & wrists should be. So now I’m on BP meds since my BP did not go down after giving birth which is typically what happens with pre-E.

We were released from the hospital on 1/15. Naomi’s bili levels were better (12.6 so just below the levels were they need to put her back in light therapy). She had her 1st drs appt on 1/16 & here bili levels were the same so she has a recheck on 1/22 for that as well as her weight. Still adjusting to the lack of sleep. Plus this little angel still wont BF so I'm having to pump & give her EBM for every feeding out of a bottle so that takes forever. Especially, since the hospital lactation consultant & Naomi's pediatrician say since we are having to do it this way that I have to pump & feed her every 3 hrs (if she doesn't want it earlier). So it lo oks like I’ll be having a bottle baby but as long as my milk stays at the levels she needs we won’t supplement with formula again unless after absolutely necessary. On another note, since I & Naomi ended up so ill DH was actually given time off work for the hospital time but has to go back to work tomorrow.

As to the BP meds, since 1/9 I have already lost between birth & water weight , 30 lbs & this does NOT include the weight I gained & lost just at the hospital as a cabbage patch doll since all I have is my OB appt weight & not a hospital weight (I did have a few residents say my water weight gain during the 48hrs of labour was scary , they used compression boots on my legs for 2 days to help witht the water gain & keep me from getting a blood clot until I could start on my blood thinner since I had an epidural)

Naomi had her 2nd follow up appt 1/22 & it looks like momma's milk even given by bottle is doing her good. In the one week that has passed since her last followup appt she has gained a full pound so she is now 7 lbs 1 oz , 19 1/2inches long & 14in head (so she gained 1/2in in length & 3/4 in in head size since birth). Bili is down to 4.4 (YEAH!!!). Next follow up appt is in 2 wks but they have the visiting nurse coming out every week to weigh her, take my BP (still a little high even on the meds), & they will see if they can help with this latch issue we are having.

even though I'm a paying member here I can never get my pics small enough to attach so I'm PMing you my webstie with the password so you can see naomi

[Erin83]

Wow, congrats on your little angel!! Sorry, I didn't get your PM, apparently my box was full, but I just cleared it out so I should now get it. Sounds like you had quite the experience. Have you gotten her tested yet for the Prothrombin Gene Mutation? We thought with our baby, we will probably go ahead and have it tested right away. They told us that was our decision, we could go ahead right away or wait a few years. I think I would want to know right away and DH agreed with me. Glad to hear everything went well after the c section and everything. I couldn't even imagine someone trying to manually dialate my cervix, ouch!! Oh by the way, Naomi was born on my birthday!!! I thought that was cool when I read that!! So congrats and keep me posted. You can PM me again and I will look at your pics!! Thanks, Erin

[Aubie]

No we haven't had her tested for the prothrombin mutation yet. I need to ask the specialist about that though. I'm glad that Naomi could be your b-day gift!!

[Erin83]

Well, I went to the OB today so I just thought I'd post the latest news. Finally got AF on Sunday so that means I can start a cycle of Femara. He decided to switch me to Clomid because it was cheaper for me to get. So that was nice of him. I asked him why I m/c last summer and he told me he thinks its because girls my age, 1 out of 3 lose their first one. He doesn't think there is anything to do to prevent it from happening again and he doesn't think it had anything to do with the gene mutation, which is nice. So thats my latest, I've never done Clomid before, so I'm hoping it works. Its cheaper so it would be nice if it did. Well, I'll post again when I know something interesting!! Erin

[Aubie]

Erin- hope the clomid works, as to the m/c response from the dr- heard that kind of crap myself & it took me being a bi*ch & insisting on testing to find out why it kept happening to us