A Few Follow Up Questions on the Previous Post

There were a few more questions that came up from yesterday's post. note: I am not a doctor, but I did do a lot of research when I was pregnant with the boys. What I am writing here is my take on what I found out...

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From what I understand, choroid plexus cysts are actually fluid filled pockets of space within the part of the brain, the choroid plexus, that makes cerebrospinal fluid for the brain. They usually appear in the second trimester (most people find them during their 18 week scans) and are often gone by the third trimester. These cysts are found on anywhere from 1-3% of all babies and do not affect the baby's brain's function or the baby's personality.

There is quite the debate over these cysts. For some time, these cysts were associated with a higher than average risk of Trisomy 18 (I think the highest I saw was an increased risk of 1:300, although that was from dated data). But, with no other abnormalities to indicate Trisomy 18, many doctors now believe that the risk of miscarriage from an amnio is higher than the risk of a genetic disease. Often, the only recourse needed is to do a thorough ultrasound to check all major organs, etc. and wait/watch. An amnio would come in to play if the detailed ultrasound showed some other abnormality.

I believe that Dr. Doom was under the old school belief that the risk was elevated for Trisomy 18. Then when he couldn't rule out the clubbed foot problem for one of the babies, and I was nearing the 35 age mark, he pushed the amnios.

Had Is.aac and I been the patients we are today (and more prone to research the hell out of EVERYTHING before we agree to a doctor's suggestion), we would have came home and likely not had the amnios done. Besides, by the time we went back for the next ultrasound, the cysts were gone, so the point would have been a non issue then anyway.

As for the guilt, I don't know why I continue to hold on to that. I guess it is my attempt to have a reason...a cause...something...anything to blame the whole clusterfuck that was that pregnancy. Yes, I know the doctor recommended the amnios. Yes, he did tell us the risks. Yes, he was the one in the know and we do have to trust the doctor's expertise to some extent. But, we ultimately made the decision to do it. I end up blaming myself because...at least there is a reason then.

Do I carry that guilt with me at a conscious level on a day to day basis? No.

Do I wish that everything went a completely different way and I had the voice to say no to that amnio that I wish I had? Yes.

Does the guilt still shows up on occasion to say hello? Yes.

I KNOW that I made the best decisions I could make at the time. I really do.

I KNOW I tried everything in my power to keep those boys in me as long as possible.

My heart still struggles there, though. Sigh.

I suppose it is a way to continue to punish myself for my heart's belief that my body failed.

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There hasn't been any conclusive reason to why my membranes ruptured. There are a couple of possibilities: 1) incompetent cervix in itself runs the risk of premature rupture, 2) the emergent cerclage also had the risk of premature rupture (infection was also a possibility, and we were all sick at the end. Don't know if the infection was there to begin with.), and 3) contractions that I didn't feel (I didn't really ever feel them even at the end before I delivered) that led to the rupture. Like I said, I had to have terb several times over that first day I was in the hospital for the rupture. Whether the rupture or the contractions came first is up in the air.

My OB was equally confused as to why Doom was saying to send me home. It makes me think all over again that he had really written that pregnancy off as unsaveable.

Sadly, I would have went home, too, had the OB not fought to keep me there. Thank goodness for him...he saved the boys with that call. I believe that with all of my heart.

This time, I will have the first course of steroids at 24 weeks as a precaution, with another series later in the pregnancy.

We're pulling out all the stops.

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I have a hard time with the memory of Doom's continued comments on whether the boys were genetically normal. I do think it directly affected how he dealt with my pregnancy the entire time. I strongly believe that he would not have "helped" us had one of the boys been genetically abnormal. Is.aac feels that way, too.

I don't get that feeling from him this time, though...his office hasn't even bothered to call me about the results from the screenings. I have to ask. It's almost like they don't even care what the results are now. (although I am sure that the results are there for them to check before we speak to anyone) It's strange. It doesn't make me trust him any more than I would have otherwise, though.

I feel he is one of those "fair weather friends" who is wonderful as long as all is going well. As soon as a complication starts to brew, I am sure he will be completely different. Sigh.

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Thank you for asking the questions. This really helps me clarify some things in my own mind, too.

The "punishing myself" part was an eye-opener...maybe just realizing that will help me combat those thoughts?

The Recap of the Boys' Pregnancy for Those Interested

or alternately titled "Why I Am So Damn Paranoid This Time Around..."

I had a question about my last pregnancy in the comments of my last post. I started to address the question there, but it turned out to be a lot longer than I expected! I figured it deserved a post all its own. (plus it gives me something to write about tonight) I hope when I write it all out, it will actually make sense.

Here is the comment from Roccie:

Hey Stacie. I want to ask you some questions that might be painful to relive. Can you help me understand what the challenges were for the twins that started at 20 wks? Was it the level II ultrasound?Are there posts you can direct me to so I can build an understanding?If I am overstepping my bounds, please let me know. I just think we are so alike,that sharing the information might feel like healing. When I can offer my experiences with severe genetic anomalies, it helps.

You are by no means overstepping any bounds here. Actually it is a good question. I am sure there a lot of people who have no idea why I am so freaked out by things this time.

Here is the drama in a nutshell:

I was referred to Dr. Doom, the perinatologist, by my RE because I was on the cusp of AMA and a twin pregnancy. My first scan with Doom was at 12 weeks. At that point, other than thinking the guy was incredibly strange it went okay. (As an aside, Doom had crazy hair. You know the kind--hair that doesn't seem controlled and sticks out all over the place. It's the kind of hair you see on the mass murderers mug shots on television. I told Is.aac that Doom's crazy hair made me worry about him. I should pay attention to those kinds of feelings! I could have saved myself from a bunch of worry.)

At my 16 week scan, Doom found that both boys each had two choroid plexus cysts on their brains, each boy had one in each hemisphere. The cysts were rather large, and let's face it, no one wants to see big black holes in what you know is your babies' brains. He led us to believe that this is a huge marker for Downs (although I have since found that it is a soft marker that is greatly disputed). One of the babies (Ja.son) also had what was believed to be at least one clubbed foot. It wasn't clear because of how he was holding his foot, though. While we went into that appointment with no desire to do any genetic testing outside of the normal screens (which came back normal at first tri), we were scared enough to have amnios done on both babies. Afterward, I started having what I considered to be Braxton Hicks contractions fairly often--nothing regular and they did not hurt, but I had them often enough to make me call Doom. He said it was BH and he'd check me at my next scan in 4 weeks.

Fast forward to 20 weeks, my cervix had shortened from over 4.0+ to 1.2 and had funneled. Sh.awn's foot was kicking at my cervix. With each kick, my cervix moved. That was bad news. Doom contacted my regular OB, scheduled my rescue cerclage for the next day, told me he hoped we'd make it to 24 weeks (but did say that I didn't have great odds at that), and generally traumatized us both. He did give me P17 shots, but said he didn't think it would make much difference to the outcome. The good news was that the cysts were gone, but I felt like all of this started because of an amnio I never really needed... I knew in my heart the boys would be fine, but I allowed myself to be frightened into doing a procedure I didn't really want. (cue guilt)

Had cerclage done by my regular OB and went home to strict bed rest--up only to pee and shower for 10 minutes or less every other day.

Every week we went back to Doom who still predicted dire results...we were just waiting until I delivered any day in his eyes. (at least it felt that way)

26 weeks exactly saw my membranes rupture. I knew what it was immediately. There was no possible way I could have had that much fluid in my bladder. No way at all. When you add in that one side of my abdomen had deflated and I was clearly lopsided when I looked down, it was pretty clear in my mind. I called Is.aac, and we headed off to L&D.

Doom had a tech meet us there to do an ultrasound. Fluid was lower around Baby A, but still on the low end of normal. Doom came in later to check me, but said that I did not rupture my membranes and I should go home.

My OB, on the other hand, actually did an internal and confirmed that he found ferning (a pattern that can be seen with a microscope when estrogen and amniotic fluid mix together and cause salt crystallization). He's the one who gave me the steroid shots and admitted me into the hospital to make sure I had the entire series. During that first night, I was given shots of terbutaline to stop contractions I never felt.

The contractions stopped so I was sent home with heavy duty antibiotics to ward off infection. I was scheduled for another Doom visit at the end of that week.

At 27 weeks, 3 days, I went back to Doom for another ultrasound. There he found that Baby A indeed had lower fluid (duh) and confirmed that I likely ruptured the last week (duh) and sent me back to the hospital to be admitted.

There I sat...well, lay in bed for another week before I delivered the boys. We all were pretty sick from some sort of infection that had set in after my membranes ruptured.

So that is pretty much the story. I don't trust Doom, as I am sure you can see why. Unfortunately, he is the ONLY peri within an hour of us.

I don't exactly trust my body either, again I'm sure you can see why.

As for the dates of the posts that refers to all of this stuff, the posts are between August 2007 to October 2007.

**Updated - I made Is.aac read this to make sure I got the details right. He said I pretty much did, but I didn't convey the fear that we lived in constantly during that time. He's right. I didn't. Doom was so, so negative every single time we saw him. It was a really hard time. Blah.

He also reminded me that I left out that Doom asked the tech every single appointment if the boys were genetically normal. We always had the impression that the only reason Doom gave a damn (if you can call it that) was because both of them were genetically normal. Had one or both not been...well, I don't think we would have gotten much help from him at all. Makes me sad to think about that.

TTC History

TTC History:

• 12/29/10 - Consult with RE. Plan for laparoscopy and hysteroscopy as soon as possible. Now in the big wait until that is finished. (You can check out the whole conversation here.)


• 1/26/10 - Fucking universe. BFN.


• 12/27/09 - FET #2 begins. Started del.estrogen and waiting for transfer on 1/14/10. The universe better behave this time.
  


• 11/24/09 - Sit out cycle because estrogen was too high to begin del.estrogen. Had three monitoring appointments to try to "chase the numbers down" but ultimately we decided to cancel the cycle.


• 10/13/00 - FET #1 take 2. Transferred two beautiful blasts. Negative. WTF?


• 9/20/09 - Begin FET #1. FET cancelled on 9/28 because I ovulated while on del.estrogen. Lucky me.


• 8/9/09 - Second ultrasound shows no heartbeat at 7w2d. Take misoprostol to force miscarry. Had the week from hell. Finally miscarried 8/14/09.


• 8/6/09 - No heartbeat. 30% chance of viability. Recheck on 8/9/09. Not feeling good about this. :-(
• Sh.awn has another shunt revision. Spotting begins. No cramping. Told not to worry, spotting is normal...


• 7/17/09 BFP!


• 7/8/09 - Transferred 2 grade A blasts


• 7/3/09 - Retrieved 11 eggs! 100% Fertilization. Whoot!


• 06/09 - Start stims for IVF #4


• Feb.-Mar. 09 - Plan to revisit the RE. Sigh.


• 1/09 - Sh.awn needs a revision to his hernia surgery. Back to the hospital for him.


• 08/08 - Began actively trying for #3. Of course, we haven't been on birth control at all since the boys were born.

• 3/08 - 5/08 - Sh.awn has a series of 8 surgeries and 1 major infection over an 8 week period. "The very dark days" is what this time is referred to around here. 3/28/08 - My father passed away as a result of a car accident.

• 2/3/08 - Ja.son comes home after 100 days in the NICU. Finally together after the longest weeks of our lives.

• 1/25/08 - Sh.awn comes home after 90 days in the NICU. Ja.son in NICU receiving antibiotics for infection (found the day he was supposed to have been discharged).

• 11/07 - My cruel body decides it doesn't want to allow me to pump for the babies, and for added shits and giggles, let's give her a period again. After all, it has been exactly 4 weeks since she gave birth. She must be ready. Ha!

• 10/27/07 - Sh.awn and Ja.son are born at 28 weeks 3 days gestation.

• 10/07 - Twin A (Ja.son) ruptured at 26 weeks. Placed on antibiotics.

• 8/07 - Placed on bed rest at 20 weeks due to shortened cervix (1.2 cm). Seems those contractions may not have been BH after all.


• 7/07 - Had amnios done. Two healthy babies! Both boys. Cervix measured 4.0+cm. Started having what was deemed BH contractions (never confirmed by ultrasound)

• 5/07 - Repeat blood work shows that Protein S levels are low normal. Remain on blood thinners anyway.

• 5/07 - It's twins! EDD is 1/16/08.

• 4/07 - IVF #3. 10 eggs retrieved. 8 fertilize. Transfer 6 (yes, I know. Crazy.) BFP!!!!

• 3/07 - Blood work shows compound MTHFR and Protein S deficiency. Will need to be on blood thinners during pregnancy, starting at positive test.

• 3/07 - MC #2 at 5.5 weeks.

• 2/07 - IVF #2. 8 eggs retrieved. 6 fertilize. Transfer 4. BFP!!!!

• 1/07 - MC at 5.5 weeks.

• 12/06 - IVF #1. 6 eggs retrieved. All fertilize!!! Transfer 2 and have 1 frosty. BFP!!!

• 11/06 - Cysts. Sit out cycle.

• 10/06 - Injectible IUI. 5 follies. Lining even better. BFN

• 9/06 - 2 cysts. Sit month out.

• 8/06 - Injectible IUI. 4 follies. Lining good. BFN

• 7/06 - Clomid IUI. Thin lining. 3 follies. BFN

• 7/06 - Went to RE. Had day 3 blood work done. FSH is 13. WTF?

• 4/06 - Repeat sperm analysis showed infection cleared. Sperm count is so-so.

• 2/06 - Sperm analysis shows a high white blood cell count. Went on antibiotics.

• 12/05 - New OB. Went for HSG and blood work. All seemed fine.

• 10/05 - Went to OB. Told to "relax" (yes, by a doctor-beotch) and give it a few more months.

• 11/04 - Finally talked husband into giving this ttc stuff a shot. Stopped BCPs. Thought for sure we'd get pregnant right away. HA!

• 08/02 - We got married!

• 06/89 - Started dating my husband. We had just finished our junior year in high school.