Everyone has a story

While I already sadly have cancer on my mind as we mourn my dear aunt, in light of Angelina Jolie's Op-ed in the NY Times regarding her decision to have a prophylactic breast (and at a later date ovarian) removal after learning she had the BRCA1 "cancer gene", the Times is revisiting their Pulitzer Prize winning story from 2007 about other women who've undergone this procedure.

The woman featured in the "Previvor" story, Dr. Deborah Lindner (the original story and her recent video update) was the OB/GYN who I met/saw the day of our anatomy scan as part of our rotation, when we found out we were on our way to losing the twins, and she told me there wasn't much they could do for me/them/us.  My regular OB (Dr. Levin) was unfortunately on vacation late that August and ironically the one in the practice of eight who ended up delivering the babies in Dec. (fellow twin mom, Dr. Kamel) was one I had never met before the day they were born.  

Anywho, upon promptly securing an MFM, the rest of the practice was very supportive of us and our desire to try to save our babies (though it later took half the practice to remove my cerclage).  I didn't write that much about all the details of what happened at the time, it was just too painful and difficult and I had already switched into crisis mode.

While it crossed my mind at the time, I have no way of knowing whether Dr. Lindner's prompt departure from the practice after our episode with her had anything to do with our case or not.  She now apparently works at a vein clinic in the city (and is a brunette).  If she left voluntarily, I can only guess it was likely due to her young family, which she's had since her surgery, as the scheduling demands of being an OB/GYN are rigorous, unless you can opt out of deliveries (like my old gyne had by the time we got around to TTC).

Of course the irony is not lost on me that a physician who is so proactive about her own health would be so nonchalant about that of her patient. But if my medical experiences of the last several years has taught me anything it is that while medicine is amazing, it and doctors are fallible and in the end you have to be your own advocate and not take one opinion without seeking others.

Marking days (and knowing your risks for PTL)

The kids are 8 1/2 months old (nearly eight adjusted) and have surpassed their time inside, 36w4d, with their time outside, 37w2d, and today is the one year anniversary of the surgery that kept them cooking past 21w4d and saved their lives. 

After losing my mucus plug last 8/19 @ 19w (and then having an OB clear me w/a long and closed cervix as we were heading OOT on vaca) and then six days later discovering my funneling cervix at our anatomy scan (which put me on bed rest), I quickly found an MFM that ordered that I be monitored more closely (and put me back on P4).  After a week of twice weekly checks showed that my cervix was stable and then much improved/normal, the third showed that I was beginning to dilate.  By the time I got into surgery that afternoon, I was already two cm dilated (with four cm being the limit for being able to be sewn shut).  It was one of our very worst and (in the end) best days...

Every day now, I look at the babies and know how lucky we were that my appointment just happened to be on that day and that my body failed so slowly.  We've just passed what would have been the first birthday of our first baby who we lost.  I am a very emotionally resilient person, as is DH, but I'm just not sure that I would have been able to cope very well with birthing three lost babies.  There is a limit to how much you can even imagine bouncing back from...

In an attempt to hopefully save others from a similar situation, I wanted to share the risk factors that I had (and should have put me on a short list for closer monitoring) and all the many others, so you can advocate for yourself and your babies.

According to the March of Dimes, I had all three of the greatest risks of having a preterm birth:

A uterine septum (or other uterine/cervical irregularity) can cause problems, even after removed.  In our attempts to get pg, I'd also had several surgeries (three over the course of 16 months) to address my septum and a polyp, which involved dilating my cervix (any D&C-type procedure increases the risk of having cervical problems or adhesions).  I'd also had a cervical cone biopsy in my 20s after an irregular Pap, which thankfully was benign, but left me with a little piece of my cervix missing, which also weakens it.

Though I was carrying multiples, a major risk factor, just having done IVF and being pg with one baby is sadly also a risk factor for preterm labor.

Since my first pregnancy ended in a spontaneous loss, this also put me at higher risk for another preterm loss (since the root causes, including low P4, were likely the same).  First trimester losses sadly garner little serious attention, so it was not considered a risk at the time.  Though if it had been several weeks later, it would have raised more red flags and I would have been a candidate for a preventative cerclage, rather than needing a rescue cerclage.  How sad is it that you not only have to lose babies to be treated proactively, they must be farther along...

Though I was nearly 35 when all this occurred and age (high or low) is a risk factor, I was very healthy and didn't have any of the other health related risk factors (preeclampsia, high blood pressure, diabetes, under/overweight, clotting disorders, other disease/infections/birth defects, etc.)

All the other/lifestyle risk factors actually ran counter to my situation.  These include race, socioeconomic status, marital status, working status, access to prenatal care, unintended pregnancy, smoking, alcohol/drug use, lack of social support, stress, domestic violence, and exposure to environmental pollutants.

If you are TTC or newly pg, please check out the list of risk factors (there are so many, but some intersect w/those causing IF, like PCOS) and see if any of them apply to you and discuss with your physicians.

And so it is finally September, when we also mark two years since we lost my FIL and my sister was dx w/cancer.  Those were some dark days...  Thankfully, my MIL is bolstered now by having my BIL back in India, a new DIL, and of course new grandbabies (which she'll be back to see in the new year).  And my sister is so far cancer free since her surgery and chemo last year.  Thanks to those who sent her cards and/or added her to your prayers.  We also get to mark another year of marriage (6!) and life (36!), opportunities that we cherish.  We know just how lucky we are and are very thankful, every single day.

If you are going through hell, keep going... -Eleanor Roosevelt

A month on... (& nearly 26 wks)

A month ago today, we had the emergency surgery that saved our babies.  It is still difficult for me to wrap my head around all that has happened.  To say that we feel lucky is a huge understatement, but as my step-mother told me frankly it was actually me that is responsible for them still being around.  By going to the hospital and seeking out an MFM promptly after we learned of the funneling, we made it known that we were not going to follow their passive stance and wait for the inevitable terrible things to happen, we were going to fight my failing body with everything that we had.  If I had waited the two weeks that the not my regular OB had told me to be seen again, it likely would have been too late.  As even on bed rest, 12 days later I quickly began to dilate.  While that should just make me feel good, it was a huge burden that was really overwhelming for me to carry for the several weeks as we waited to get to viability.  It is terrible to feel like you are the only ones who care about what is it stake.  They were not just 20 week not yet viable babies to us, they were/are our babies that we had already fought like hell for and were not just going to sit by and see if maybe we were lucky, they might make it.

We are coming up on 26 weeks, which is again not a major milestone, but is ever closer to the end point.  If the babies were to be born in the coming week, their chance of survival would be at least 85%.  The cerclage, which still appears to be holding, is now ten weeks from coming out.

I actually put real (non-yoga) clothes on today for my big trip to the OB, but don't get too excited I still don't do hair and make-up.  This dress makes me look bigger than anything else I've worn.

Emergent cerclage for incompetent cervix

The title pretty much says it all, but this is what we've been up to for the last few days. 

I had my regular cervical check yesterday and the u/s showed that we had regressed to where we had been a week before (short: ~2.5cm and funnelled to ~1cm), but upon the manual check by the OB, she found that she could get her finger up into my cervix.  She sent me to L&D immediately.  By the time we got to Prentice and got checked again (a few hrs later), I'd dilated to 1cm.  They finally gave us the option to get a cerclage.  We said, yes please.  By the time I got in the OR a few hours after that, I was dilated to 2cm.  They stitched me up tight after giving me a spinal, which was not terribly pleasant and hurts like hell now.

I spent the night in the hospital for the first time ever, with DH and my mom (who just happened to be passing back through town again), and it was a rough one, I'm still exhausted.  My room, ironically, looked out over the MCA, where DH and I had our first date almost seven years ago.  My OB, Dr. Levin, came by this morning to discharge me (she had been on vaca during my recent adventures) and we decided to do not only full bed rest and weekly checks, but also weekly IM progesterone shots, which will be administered in the office.  The compounder is sending it off to them, so I will go in either tomorrow or Friday for the first one.

Still having lots of aches and pains and hoping that time and rest will help me feel a little more normal.  Almost 22 weeks! :)

September is looking up!

I've always loved September (though last year was completely awful), and it's finally here! 

We had our third cervical check in a week today and for the first time since they found the funneling last week, it is lengthened (to 3.75cm) and CLOSED!  We are thrilled!  I can hardly believe it.  So I guess the verdict is that I do still have some cervical integrity (and am not in the 1% w/an incompetent cervix) and it is dynamic rather than effacing.  Thank goodness.  There is nothing like the prospect of preterm labor at 20 weeks to put the complete and total fear of God in you, let me tell you.  But we are keeping the course, in bed, on Crinone, and going in again on Tuesday for another one of my twice weekly checks.  We will continue these through 24 wks and then see if we can scale back.

The babies still look great.  Baby girl has a HB of 165 and is up to 13 oz. and is measuring on track.  Baby boy has a HB of 158 and is up to 15 oz. (almost a whole pound!) and is measuring a week ahead.  He is head down and banging on my cervix already, which feels fabulous (note sarcasm), but she is a little more chill and is transverse on top of her brother.

What's old is new again

Just when I thought I was never going back to the now months past vag cam visits and Crinone, here we go again...  We went to the MFM this morning and thankfully my cervix funneling hasn't changed since Thursday, and she also doesn't think a cerclage is a good idea at this point.  The risk of breaking my water during the procedure and of infection apparently outweigh the benefits, though I must admit part of me (and DH) wanted her to say they would just stitch me up so we could relax a little.  The babies are both still looking great.

After the dx on Thursday and hospital trip on Friday and a very rough weekend, where I was almost entirely on bed rest fearing that my cervix was ready to give out while we had family visiting, we are both ready for a break.  But at least we have a more proactive plan.  In addition to the progesterone, she wants me to be monitored twice a week to see if/how my cervix changes.  She said if/when I dilate too early, they will stitch me up.  She said she didn't think all the pain and discomfort I'm having is related to the cervical changes, and that strict bed rest is unlikely to prevent any changes that could happen.  She said I should take it easy, which I thought I already was, and get a support band to help me as I continue to grow.

The nursery is now a new room, though we (by which I mean DH) still have quite a bit of work to do to finish the wall and paint, so we can move everything in.  I can't wait to get it all put together, but honestly given all the craziness of the last few days, I guess we aren't in that big a hurry since we've already past into what I thought would be the post-24 week lockdown and we won't be housing babies for some time even if they come early.  We now have both the cribs, mattresses, bedding, rugs, dresser, topper, shelves, art, etc. and it will be fun to see it all come together.  We still have to finalize the chair decision and get that ordered.

Bed Rest Day #1

After spending the entire day yesterday in the city at our anatomy scan and then OB appt., we finally came home and I went to bed.  Though sleeping wasn't really on the docket.  I got a few hours all night, as I was having all sorts of pain and pressure.  I paged the OB early this morning as she said this is the only indication I'd have of something changing and she told me to go to the hospital, so off we went again.

We spent several hours at Prentice, where they confirmed that my cervix is still closed and I was not contracting (and the babies are still fine).  They talked to the OB, who we are meeting with again on Monday.  We stopped by the MFM practice before we left to get an appt., but they just took my info and told me they'd call me back.  Thankfully, they called back this afternoon and I have a 9am u/s for Monday with an MFM who specializes in multiples, high risk pregnancies and pregnancy loss.  We are very happy to get in with a specialist who can potentially give us additional options rather than just lay on my back for the next four months in hopes of keeping the babies in and that it is up to me to know if my cervix starts dilating between appts., at which point they could try to intervene.

We are very thankful that this cervical issue was discovered when we can still potentially do something to bring the babies closer to term, as many people just go into preterm labor and lose their babies before they ever know something is amiss.  Being on bed rest before 24 weeks wasn't really something I had considered, but we will figure it out.  Thankful again that I am not working and that our travel is done.  DH is amazing at taking care of me, as always.  My dad and step mom are coming tomorrow for a quick visit, when DH and dad will put up the nursery wall.

Whether it's a cerclage and/or bed rest that gets us there, we are fighting for these babies. 

If you've been on bed rest, what did you do?  I'm thinking over four months, I could write a book, or two... ;)

20 wks: funneling cervix and bed rest

We had our anatomy scan today and thankfully the babies both look great.  Baby girl weighs 11 oz and is on track and baby boy is still measuring ahead and weighs 12 oz.  We got our quad screen results, which were also normal.  But unfortunately, my cervix is funneling (which means the inside is open in the shape of a "V"), though it is still closed.  It is borderline short (2.5cm) and soft.  The OB said there isn't much they can do for this at this point, other than put me on bed rest and wait to see what happens, which is obviously not very comforting.  If my cervix starts to open, they could do a cerclage (where they stitch your cervix closed), but until that happens, they wouldn't do it yet.

This comes after an unplanned trip to the OB last Friday after I passed some abnormal discharge. which appeared to be my mucus plug.  I called and they had me come in and after finding the babies HBs on the doppler and checking that my cervix was closed, they sent me on my way.

So I finally finished my design class last week (it was disappointing, but I got an A) and we had a nice trip to NYC and the Hamptons (despite crazy delays on both ends).  So I'll be horizontal for the foreseeable future and praying to keep these babies cooking for as long as possible.  We have a long way to go...