Fetal Membranes and Alpha Lipoic Acid, Continued

Before I end my treatise on fetal membranes, I thought it would be helpful to share an image of the layers of the fetal membrane. This is from a journal article, Extracellular Matrix Dynamics and Fetal Membrane Rupture (2013), Strauss, J. F.

Here's a quote from the article that I found telling: "It has been hypothesized that fetal membrane rupture involves a sequence of events that starts with distension and loss of elasticity, separation of the chorion and amnion, disruption of the chorion, distension and herniation of the amnion, and finally amnion rupture. This proposed sequence of events appears to be the result of structural alterations in ECM with resulting biomechanical changes in the membranes, primarily the amnion, which is the strongest component of the fetal membranes. Since cervical insufficiency is often associated with PPROM, it is likely that preterm cervical changes facilitate the unscheduled rupture of membranes in PPROM."

There are other articles out there that talk through specific dynamics of what happens to the various layers, if you're interested.

Finally, let's talk alpha lipoic acid (ALA) again.

I realized it might be useful to list the dosage that I've found in the research for alpha lipoic acid as it relates to prevention of pprom. The best study I've found so far is actually focused on prevention of PTL, and it found a massive reduction in risk from a daily dosage of the following: magnesium 225 mg, alpha lipoic acid 100 mg and vitamin B6 1.3 mg - 1x/day. Now, let me say that the reduction is so massive that I am really suspicious of the article. Either they're not correctly describing the population of study participants, or this is too good to be true. But it's probably worth a read if you're interested in research on this topic. Study: Efficacy of Magnesium and Alpha Lipoic Acid Supplementation in Reducing Premature Uterine Contractions (2014), Parente, et. al. I'll probably do a lot more reading on this topic and post anything I discover in the future.

The majority of studies I've found looking at alpha lipoic dosage in humans related to patients with diabetes. In that case, I am routinely reading dosages of 600 mg/day.

I also found a study that made my heart go pitty-patter: pregnant women with subchorionic hemorrhage. Those given both alpha-lipoic acid (300 mg 2x/day) resbsorbed the SCH more quickly than those on progesterone alone. See: Alpha Lipoic Acid (ALA) effects on subchorionic hematoma: preliminary clinical results.

I also found a single study looking at ALA with IVF patients. It found a higher number of grade 1 embryos in patients taking ALA plus myo-inositol . See: Effect of myo-inositol and alpha-lipoic acid on oocyte quality in polycystic ovary syndrome non-obese women undergoing in vitro fertilization: a pilot study. While that study is interesting, the population is small and using the patients as their own controls is really problematic - so take the results with an entire shaker of salt.

Beyond that, there are many studies using rats and suggesting that ALA protects against reactive oxygen species (ROS) which are correlated to damage to DNA and RNA and are considered agents of cell death. All sounds good, right? Sure, but be aware that ALA is also associated with effects on fetal hormones (protective effects, but effects none the less). In other words, do your own research and think very carefully before you consider taking it.

Preventing Fetal Membrane Rupture

Given my history, I'm quite interested in pPROM, and what might be done to reduce the risk of pPROM. The obvious answer is to prevent bacteria from ascending into the uterus, which we're hoping to accomplish via the TAC and clearing out my chronic endometritis. Beyond that, though, I wanted to learn more about fetal membranes.

Below are a selection of research articles I found. I've mostly included those that found consistent results. This is why you won't see any studies on Vitamin C below, as C has mixed results with respect to FM rupture. The caveat: read these and make your own decision, and note that the researchers are often the same across these studies. I will say that if I"m ever pregnant again, I intend to stay on progesterone (P4) and take Alpha-lipoic acid.

Fetal Membrane structure (FMs):
Fetal membranes are composed of two layers, the chorion and the amnion. During pregnancy, a weak zone in the fetal membranes typically develops over the cervix. This is the spot that typically ruptures during a normal labor.

In various modeling and testing, the amnion is the most important component of FM with respect to strength. Thinner amnion and chorion are correlated to lower strength and greater risk of rupture.

See: Function and Failure of the Fetal Membranes, (2017) Verbruggen, et. al.

Etiology of FM rupture:
When looking at the weak zone that appears over the cervix in a healthy term pregnancy, researchers find remodeling of the collagen that makes up the FM. Inflammation/infection and bleeding/abruption both produce the same collagen remodeling effect, when modeled using TNF (for infection) and Thrombin (for abruption).

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Correlates with FM strength:

"The dietary supplement α-lipoic acid and progestogens (P4, MPA and 17α-hydroxyprogesterone) have been shown to inhibit both TNF and Thrombin induced FM weakening. The progestogens act at multiple points by inhibiting both GM-CSF production and GM-CSF action."

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Alpha-lipoic acid moderates the impact of both TNF and thrombin on FM. "Treatment of FM with 0.25 mM LA completely inhibited thrombin-induced FM weakening and MMP expression (all p < 0.001). Thrombin treatment of cultured FM induces mechanical weakening and increased MMP3 and 9. Treatment of FM with LA inhibits these thrombin-induced effects. We speculate LA may prove clinically useful in prevention of PPROM associated with abruption."

See: Alpha-lipoic acid inhibits thrombin-induced fetal membrane weakening in vitro. (2010), Moore, et. al.

"TNF and thrombin both weakened fetal membranes and elevated media GM-CSF levels on the choriodecidua side of the fetal membrane. Pretreatment with progesterone, MPA (medroxyprogesterone acetate), or HP (17α-hydroxyprogesterone) inhibited both TNF- and thrombin-induced fetal membrane weakening and also inhibited the induced increase in GM-CSF. GM-CSF decreased fetal membrane rupture strength by 68%, which was inhibited by progestogen pretreatment with a potency order: progesterone <MPA <HP"

See: Progesterone inhibits in vitro fetal membrane weakening. (2015). Kumar, et. al. 

Quinn's Birth Story

Earlier I wrote about Alexis and Zoe’s birth. Given the similarity in circumstances with Quinn’s pregnancy, I was very worried that her delivery would be similar. Fortunately, it was a night and day difference.

Monday the 24th, I went in for my routine antepartum ultrasound. I knew we’d be getting bad news, because I’d been leaking so much more fluid. I think the u/s showed that she still had some fluid, but it also showed that her feet and cord were fully engaged in the birth canal. She was breech with her little legs crossed. We knew then that it was over.

The doctors and residents came in for rounds about an hour later and told us what we were expecting – that I was in labor and she’d be born in the next day or two. The doctor, who was the most compassionate of those we had met, said delivery would probably be very fast. She told us they’d move us over to L&D when we were ready, but there was no rush.

We let our family know. While DH’s mom was in town, my dad and step mom had left for a few days because they’d had a friend who was visiting them at their home. They changed their flights to get back as soon as they could, but that was Tuesday the 25th.

I got up, for the first time in three weeks, and got a long, long shower. After that, we let the nurses know we were ready to go to L&D. A room opened up and we were moved somewhere between 11 and 12. I was having relatively painless contractions every 10 minutes or so. I knew I was contracting only because I could feel my belly get firm, but there was no pain. When I was up and walking around, I felt pressure and cramping in my back, but nothing that would actually be pain.

We stayed in the L&D room for about 2 hours, with the nurses checking in, but our doctor never came. Eventually we learned that once we moved to L&D, the perinatologist was no longer allowed to see us, so one of the hospital staff doctors would deliver Quinn. We politely but adamantly expressed dismay over that. A month earlier I’d asked who would deliver us when we were transferred to the university hospital where my OB doesn’t practice, and I was told perinatology would.  I didn’t want a complete stranger who didn’t know my history of hemorrhage there. We said this, and the nurse left.

About an hour later, the amazing perinatologist, Dr. Y., came in. She checked me using the ultrasound, and Quinn was engaged further with no fluid left, but not quite far enough out yet. Dr. Y told me to try walking for an hour. If we could get Quinn to deliver without further intervention, Dr. Y would break hospital rules to be the one to deliver, along with an OB resident. I walked for an hour, and Dr. Y and the resident came back. They used the ultrasound to see what was happening as I pushed, and guided me. It was amazingly calm and peaceful, and almost entirely pain-free. After a half dozen pushes or so, I could feel Quinn start to move. After another few pushes, she was out. Someone checked and confirmed Quinn was alive.

Dr. Y asked if we wanted to hold Quinn and then suggested we do delayed cord clamping to maximize our time with her. They wrapped her up and gave her to me, and holding her was so utterly amazing. She was tiny, but I could feel her move in my arms. That was the most wonderful, precious thing I’ve ever felt. The nurses got my MIL from the waiting room, so she could come in and see Quinn while she was still alive.

Eventually they cut the cord and gave Quinn to us. She was such a fighter that she was still alive. They also started me on Pitocin as the placenta hadn’t delivered. We just held our daughter and let the doctors do their thing, and eventually the placenta did deliver. After about an hour and a quarter, the nurse checked Quinn’s heartbeat and she was gone. They took her, wrapped her up in a new blanket, and gave her back to us so we could spend more time with her. It wasn’t enough. It could never have been enough.

I am so grateful for such a calm, peaceful experience. I am so grateful for the time we got with Quinn, and that Quinn got to meet one of her grandmas. I am so grateful that this delivery went smoothly, and Dr. Y was willing to stay with us. During a day of utter heartbreak, those things were rays of light. Afterward, they let me go back to spend the night in my old room in Antepartum, and I was discharged the next morning.

The nurses took pictures of Quinn after she left our room, including the one above. I didn't find this picture until yesterday. It's funny because when she was born, I recall thinking that she didn't really look like anyone in our families. Seeing her in this photo, I realized she is the spitting image of my maternal grandmother. That is grandma's chin and nose, no doubt about it. I'm hoping that they're together somewhere now, and grandma is giving Quinn all the love and snuggles that I can't give her in person.

One Surprising Step Ahead

Today was my MFM consult. Some of it went as I’d have expected, other things were very different. Starting off, the first and biggest recommendation the perinatologist had was to get a pre-pregnancy transabdominal cerclage. With Dr. Haney. I wasn’t expecting that at all, but it turns out she had a patient with an identical history to mine. Lost twins due to pprom. Lost a singleton to IC. Did a TVC and kept culturing and treating the bacteria they found during pregnancy. . . . and still lost that pregnancy. So they sent her for a TAC, and she recently delivered a 39 week baby.

To say that recommendation was a pleasant shock is an understatement. While I was hospitalized and talking to another MFM in the group, he told me we’d place a TVC at 12 weeks during future pregnancies. I had pushed back, hard, on why you’d do a TVC, especially in someone with infection issues, and not TAC. He was adamant about the TVC being the right choice. So to hear the number one recommendation being a TAC, and to be told to go to Haney, that made me feel much, much better about my decision. It also means I'm one step ahead of the game, having already consulted with him and booked surgery.

On the subject of infection, this perinatologist, Dr. N, agreed with Dr. Haney that the underlying cause of both losses was cervical issues. Even though my cervix was long and closed after Zoe’s water broke. Even though Zoe was the higher baby, and bacteria should rupture the lower baby’s membranes first. She truly believes that there’s no scientific benefit or merit in looking for chronic endometritis, and that treating any bacteria found in my uterus that don’t belong there would cause other problems, as she saw in the patient previously mentioned. Having said all that, we pressed really hard and she agreed to request an endometrial biopsy and a consult with the true Infectious Diseases department. So, on 9/6, I go in for my SIS and a biopsy. Based on what those show, we’ll figure out what comes next.

Dr. N mentioned that infectious diseases would probably screen me for various autoimmune issues that interact with infections. With my history, that seemed wise.

On the topic of progesterone, she noted that it’s shown to help in cases of cervical shortening before 24 weeks, but with the TAC I will not have cervical shortening. Thus, she can not see any clinical benefit. At the same time, she’s willing to discuss further/prescribe it, if I get there, because there’s no harm either. The same goes for additional cervical monitoring during pregnancy. No need, but no harm, and there’s something to be said about the positive impact on my anxiety levels.

With respect to my Asherman’s, and my history of autoimmune disorders, that’s unlikely to be related to pPROM. I will have my placenta monitored more closely during future pregnancy to make sure there are no IUGR or placental insufficiency issues caused by the Asherman’s.

So, the plan:
1. During next cycle (which started when I walked out to the parking garage after the appointment) get endometrial biopsy and confirm uterine cavity is clear of scarring. At the moment I’m scheduled for a biopsy and SIS, but that may be replaced by a biopsy and hysteroscopy.
2. Consult with Infectious Diseases. Determine treatment based on biopsy and results.
3. Have TAC placed.
4. Return to CCRM for COH.

DH and I need to talk a bit more, but it’s a plan I feel pretty good about. It may not get us a THB, but I will feel confident that we’ve tried EVERYTHING we could in getting there.

Blocking the Exit

Earlier this month, we had a telephone meeting with a doctor who could probably be described as the expert in transabdominal cerclage. His name is Dr. Haney. Due to my cervical issues this pregnancy, we’re unwilling to consider trying again without a better option than a(nother) transvaginal cerclage. Dr. Haney, who is located in Chicago, appeared to be that better option. For the sake of my record keeping, I’m going to use this post as a place to track what we learned during our two hours on the phone with him.

The Consult

Here’s my best translation of what Dr. Haney told us. I’m not agreeing/disagreeing with anything, just trying to reproduce in my own words what I heard from him. Since this was filtered through my memory/lens, take it for what it’s worth!

The cervix is like a tube or a spindle: there’s tissue around an open canal. Of that tube, 2/3rds of it is up in the abdominal cavity, attached to the uterus, and the last third is down in the vagina. There is a band of tissue at the top of the cervix, the part in the abdomen, that remains tightly closed. During labor, the pressure of the baby’s head, plus contractions, is what forces that band to dilate. But outside of labor, it stays tight. That’s in a woman without cervical insufficiency (CI).

In a woman with CI, the entire column of the cervix dilates from the internal opening downward as the relatively small pressure from the growing baby presses down due to gravity’s impact. As the cervix dilates, bacteria can get into the uterus, and the membranes of the amniotic sac can tear free from the uterus and prolapse out into the cervical canal and vagina.

With a transvaginal cerclage (TVC), a stitch is placed in the lower third of the cervix. Women who have true CI and a TVC will funnel down to the stitch, because nothing has been done to prevent the upper 2/3rds of the cervix from dilating. This means membranes will pull away from the wall of the uterus, and bacteria from the vagina will be able to ascend to the uterus. If I understood Dr. Haney correctly, his position is that women with CI and a TVC will always wind up with chorioamnioitis because of this ascending bacteria. The chorio in turn worsens the chances of survival for their infants. Having had chorio with all three girls, and knowing that Alexis and Zoe passed before birth due to severe chorio, this was a painful reminder of everything that we’ve been through.

With a transabdominal cerclage (TAC), a 2-3 inch incision is opened at the bikini line. A woven fiber band is tied around the cervix at some point in the upper 2/3rds. In my case, Dr. Haney would place two bands. Each band has the strength to support 100-120 pounds, so they could easily support the weight of a fetus, placenta, amniotic fluid, etc. With the bands in place, dilation is impossible. They’re not tied so tight that the cervix is occluded, but they are tied tight enough that the membranes can’t ever prolapse and the cervix can’t funnel. The result of this is that the mucus plug stays in place, the cervix stays long (~4cm) and bacteria can’t ascend from the vagina. The other results: while one can have periods, first trimester miscarriages, and get pregnant “the old fashioned way,” one will have to have a c-section for any 2nd trimester delivery. There is also a risk of uterine rupture as the cervix can’t dilate if contractions occur, and something’s got to give.

Dr. Haney reported a 99% success rate, where success is defined as a live birth, and even mentioned that 92 of 92 sets of twins whose mothers he performed TACs on were born live. He noted that when babies are born before term with TAC in place, it’s due to other issues.

What are my feelings on all of this? 

I agree with the belief that TAC has much higher success rates than TVC, when you define success as live birth. There are numerous studies, most from outside the US, to support this. If we try again, I will have a pre-pregnancy TAC placed with Dr. Haney.  There is no question in my mind about that. Having said that, the “other issues” that cause pre-term deliveries are also very relevant to me, and I’m concerned they were minimized during our conversation. That’s probably because I was talking to someone who specializes in TACs and not the other issues, but I know exactly how this works: any complications I have during pregnancy post TAC my local MFM team will blame on the TAC. The TAC expert will simultaneously assure me it’s not due to the TAC and that I should work with my MFM team.  The end result will be suboptimal because everyone will be busy pointing fingers at everyone else. Cynical much? Why yes, I am.

Next steps

From my point of view, there are two issues that must be addressed before we decide to try for another pregnancy. First, infection. There’s a growing body of literature correlating first trimester miscarriages and failure of genetically normal embryos to “take” after IVF transfer with asymptomatic, chronic endometrial infection. Correlation isn’t causation, and there are plenty of women with term deliveries who also show these markers of infection (related note, I found a study showing a decent percentage of healthy pregnancies in the 36-38 week range have chorio, but no one ever looks for it because there’s no reason to).

Looking at my personal history, I had more than 15 years of recurrent UTIs. They started when I was a kid, a few times a year, and by early 2010, I got them every month or two. I would take my antibiotics each time, the symptoms would vanish, until the next trigger caused the infection to flare up again. In 2010 I was finally referred to urology. The urologist confirmed that there were no structural abnormalities, and then told me that in some people, the bacteria just hang around. The antibiotics knock them back enough to reduce symptoms, but as soon as conditions are right again, they go out of control. I was placed on 6 months of low dose macrobid, and had my last UTI in 2010. At least, my last until 2017. Long way of saying that I have a history of bacteria hanging on through antibiotics that should have cleared them. And bacteria that were asymptomatic until something triggered their uprising. Now I can’t help wondering if ‘pregnancy’ is what’s triggered uterine bacteria.

So, we must clear up the infection issue before we can make a decision to try again.

My cervix is the second issue. I think the TAC with Dr. Haney will address that. It comes at a high risk and a high physical cost, but it’s as good of an option as exists. Honestly, I’m grateful that there IS an option that works so well to solve one of my issues, even if the associated risks are great.

Overall, more answers, one potential solution, more risk and fear.

Prayers Needed

Brief update, as I'm flat on my back:

Bleeding turned out to be my mucus plug. I went to the hospital the Sunday before the 4th, and was 3 cm dilated with bulging membranes. I was taken via ambulance to the university hospital, where the MFM said they could try a rescue cerclage, but didn't thnk it would work. They made us do a NICU consult before they'd agree to surgery. I was 18.3.

Surgery took place just after midnight Afterward the MFM was absolutely thrilled. Membranes went back of their own accord when I was placed into steep trendelenberg position. They were able to get two stitches in. Everything looked good. I was discharged the next afternoon.

I had one day at home and then woke up the next morning to a gush. We called and were told to come back to the hospital. The initial test was positive for amniotic fluid, but baby's AFIs were still normal and I'd stopped leaking. I was kept for monitoring. The next morning they had me walk around a lot and retested The consensus was that I had ppromed.

MFMs wanted us to remove the cerclage and induce due to likely infection. They said even if we didn't inudce, I'd probably go into labor. We agreed to remove the cerclage, and all the famly flew out and waited for labor to start. I immediately dilated to 3 and baby's membranes returned through my cervix, but labor didn't start.

I'm now 20.1 and praying to make it to 24 and viability. We are at high risk for infection, as I've tested positive for ecoli and enterococcus. This has been an utter nightmare, but each day with our little girl is a win. If you have a few prayers to spare, please send them our way.

13 weeks

Baby girl looked really good at her ultrasound this past week. We saw her smacking her lips and putting her hand to her face. We go back for the anatomy scan at 19 weeks on July 7. The twins were born on the day their anatomy scan was supposed to take place, so I'm apprehensive about making it that far, but all I can do is wait and hope for the best.

The MFM we spoke to told us there was nothing we could do to prevent another pprom. If we'd pprom'd with the twins after 20 weeks, they'd give me progesterone shots this time. But we didn't, so they won't. If I'd had cervical issues, they'd do a cerclage. But I didn't. They won't even monitor my cervix because it wasn't a problem last time. I got the usual bullshit answer that bacteria from the vagina can't get into the pregnant uterus unless the water breaks. On the upside, this MFM actually spoke about research evidence, instead of platitudes and headpats. He reiterated what appears to be true from the research I've read: there's not much evidence to suggest you can make a difference in pprom prior to 20 weeks, in cases with no known cause. And I don't have the same risk factors this time: no twins, no bleeding, no CVS. So they're hopeful. As for the statistics? There's about a 25% chance of pprom in a subsequent pregnancy when a woman pprom'd in a previous pregnancy. So we have a 75% shot of making it to term. I guess that's better than our shot of getting pregnant, and we've achieved that, so there's hope, right? No matter what, Baby Girl, your mom and dad love you like crazy and want you to hang out in there and be healthy until at least November!

how far along? 13 weeks

how are you measuring? She was measuring a few days ahead at Tuesday's ultrasound. They showed 13w1d based on CRL. 
size of baby? Peapod

heartbeat?  148 bpm

total weight gain/loss? 120. 2 pounds

maternity clothes? I'm in the awkward stage where my loose clothes aren't really loose enough, but I don't have enough of a bump for maternity. Bleh. 
stretch marks? Nothing new.
sleep?  Up every 2 hours to pee. Feel miserable when I do, until about 2 am.
movement? Nope.
food cravings? Nope.
gender predictions? She's a girl!!!!
what i miss? Going out to eat and not barfing afterward. Every time we go out to eat I puke. 
what i'm looking forward to? My Dad & step mom will be here this week. I am super excited to see them. We'll be taking a long weekend to go up to the Boundary Waters, to the B&B DH and I were at when we were first pregnant with the twins. It'll be a bit of a private memorial for them, and I can't think of anything more fitting, as DH and I were so excited to make the Boundary Waters a family tradition when we were expecting them.
how are you feeling? Still awful. Less constant, completely overwhelming nausea, more retching and puking with no warning. More digestive unhappiness. 
comparisons to last pregnancy? Nothing new this week. 

How it Ended

This is the last part of Zoe and Alexis’s story. I’m going to share what I remember, and what I know must have happened. In light of how sick I was, I’m sure I’ve lost time, and probably some of these memories are inaccurate. I hate that, but then I hate most everything about what happened.

When we arrived at the hospital, they took me down for another ultrasound, to see if Alexis still had fluid. The good news was that she did, but Zoe’s AFI was zero. They told me that Alexis’s water hadn’t broken, which I still don’t believe. They also couldn’t see my cervix, because Alexis’s head was blocking it on the ultrasound. I went back up to L&D triage, and they hooked me up to the contraction monitors. I was having measurable contractions at that point. One of the OBs from my group came in. She told me that I did seem to be having contractions, but since Alexis’ water hadn’t broken, I could go home or she could admit me, it was my choice.

I was honestly confused by this. I was in labor and told her I’d rather stay as I didn’t want to have the babies at home. That seemed dangerous. She agreed it would be better if I stayed. Since it seemed likely I would deliver, we decided to do an internal exam. We hadn’t done one up until then to reduce the risk of infection. However since it seemed like this was the end, the infection risk didn’t matter. She checked me and reported I was 2 cm dilated. Just as she was about done, she said “Wait a minute.” Then she paused, and then she told me, “I can feel a foot.” I had logically known we were at the end before then, but emotionally I’d still been holding out hope. When she told me she could feel Alexis’s foot, though, that was it. We agreed that I’d be moved to a room in L&D and we’d focus on pain management from that point forward. Somewhere in there, someone told me that I should expect to deliver the next morning.

I was taken to a room in L&D. They gave me the last room at the end of the hallway. It was a nice room – two windows and a decent but tiny bathroom. They gave me dilaudid, which made me feel drunk and cut back on the pain. I could feel the contractions, and they weren’t pleasant, but they actually hurt far less than my digestive system did. I’ve known a few people who said their epidurals wore off before delivery, and I wanted to avoid that, so I wanted to delay the epidural as long as possible. I made it about 2 – 3 hours on the dilaudid, and then got the epidural, and it was wonderful to be out of physical pain for the first time in a week. I shook pretty badly right after the epidural was started, but it stopped after a while when I was able to relax.

The nurses encouraged me to get sleep over night, and they’d check me the next morning. DH made a bed on the folding couch in my room, and my Dad and MIL camped out in the hallway next to my room and in the waiting room. I wasn’t in a good place physically or mentally at this point, so I wasn’t super aware of anything happening outside my room.

I woke up early Monday morning to a sunbeam shining in the window, across my belly. Every single day I was pregnant, I’d wake up early (insomnia) and I’d put my hand on my belly and talk to the babies. Seeing the sun across them that morning seemed like some kind of sign, so I spent some time telling them they would always, always be loved, and that their great grandparents would be waiting for them, that I was so grateful to have gotten to be their mom and I wouldn’t ever forget them.

Eventually the nurses and my doctor came in. My doctor checked me and said she could feel Alexis, so I should try pushing. I didn’t track the number of pushes or the time at all, but Alexis Marie was born at 7:45 am. The nurses cleaned her and gave her to DH and I to hold. She was so beautiful. She had a perfect little nose, and mouth and eyes. I’ve never loved anyone so much or hurt so badly. DH invited MIL and my dad in, and they got to hold her and say goodbye too.

At that point, my doctor told me that Zoe hadn’t moved enough to deliver, and I was still only 8 cm dilated. She put me on Pitocin and said she’d check me again later. Thus, Pitocin was started.

At this point, my memory gets really fuzzy. Sometime around 3 that afternoon I had maxed out the Pitocin, and it was determined that I still wasn’t ready to deliver. I don’t remember being checked, and I remember wanting to try pushing although not feeling any need to do so. My doctor (who I don’t remember seeing) ordered a high dose or oral cytotec. She probably did check me, but like I said, I don’t remember any of that. I remember looking at the cytotec pills and being nervous, because they were pills, so if it didn’t go well, I would have to wait for them to wear off. Apparently that was foreshadowing. I also realized the epidural was wearing off, so I asked the nurse about getting it topped off again.

Within minutes of taking the pills, I started having fully body convulsions. It was like the epidural shaking, but so much worse. I couldn’t open my eyes, no matter how hard I tried. I started to hyperventilate, and realized it, so I focused all my energy on calming my breathing, but my whole body was convulsing all over. If I focused with everything I had on relaxing, I could minimize the convulsions, but as soon as a contraction would hit, they’d start again. DH was trying to touch me, but his touching me was like more stimulus to make the convulsions worse. If I paid attention to anything at all other than relaxing, they’d just take over.

Somewhere in there, I thought I might have been pushing, but it was impossible to tell what was real and what was spasms, and talking was nearly impossible too, so I didn’t say anything. I remember hearing them page my doctor repeatedly, but she never came. Because Zoe was born at 5:45 pm, I know I must have pushed her out. It must have been during that period, but I truly don’t know. I remember hearing the anesthesiologist come in. I remember hearing that they couldn’t get my pulse or blood pressure any more. I remember feeling all the contractions. I remember the anesthesiologist taking charge of the room, ordering epinephrine, and getting my blood pressure back. I remember hearing someone say that the placenta wouldn’t deliver, and hearing the anesthesiologist saying that we needed an OR because they couldn’t fix that in the room. I remember hearing him order an OR for us, and telling the people in my room that he wanted that OR ready by the time we got down there, and he wanted blood waiting for us by then, and he wanted an OB waiting, because there wasn’t time to lose.

I remember yelling at DH to tell Zoe I loved her. I still couldn’t open my eyes, and physically trying to talk was so hard, but I needed her to know. I think I also told him to say goodbye to her for me. I remember feeling my bed moving down the hall pretty quickly and feeling it hit the wall hard. There was construction on the L&D floor, and the hallway was partially blocked by it. I remember the doctor saying something about the bed, and everyone getting their hands clear, and we backed up and were moving again. I remember feeling the elevator, hearing the doctor sarcastically ask for “a little help here” to move me from my bed to the operating table. I remember someone taking my sock off, starting another IV, putting an oxygen mask over my face, and then feeling someone’s fingers right at the base of my throat. My last conscious thoughts were “why would someone be feeling my Adam’s apple?” and then “they’re going to intubate me. This must be worse than I thought.”

I woke up in post op around 10 that night. I was told that I had hemorrhaged severely. My OB had done a d&c to remove the retained placenta. They’d done a blood transfusions and when I seemed stable, I’d been taken to post-op and my DH had been informed all was well. At some point after that, before I regained consciousness, I’d started to hemorrhage again. It was bad enough that they didn’t even inform DH, just took me back for surgery again. They were able to stop the bleed that time. Eventually I was taken up to a bed in critical care, and after another blood transfusion there the next morning, I was returned to L&D for one more night, while they kept me on antibiotics to deal with the massive infection I’d had. I never saw or held Zoe. They’d have brought her to me the next day, but I knew she’d have been in the morgue. I didn’t want to remember her cold and still. I just didn’t think I could handle that, so I never saw her. DH tells me she looked like her sister, which is a very “guy” kind of a description, but it’s how I’ll remember her.

Wednesday afternoon I was discharged. My nurse was Jeni – the same lovely woman who had been with me during my first admission. All of the nurses were amazing, but it was nice to see Jeni one last time before leaving. When she wheeled me out to the curb so DH could pick me up, she realized that another nurse and new mom with baby were waiting at the pickup door. Without saying anything, Jeni found another place for me to wait, so I didn’t have to be there with the other happy couple who were taking their baby home. I’m grateful for that.

Those are my memories. They’re not pretty. It took three months for me to be out of constant physical pain. I will always regret that I never saw or held Zoe right after she was born. I know I got extremely lucky that the hemorrhaging stopped and I kept my uterus. It could have easily gone the other way. I feel like I should have some great closing for this entry, but I don’t. The only closing that I have is that I’m a mom to two beautiful girls, and I miss them. Zoe, Alexis – I love you.

Worst Days of My Life, part II

I left the hospital on Monday. At that point, I had an ultrasound appointment scheduled for Wednesday, to make sure the girls were both still alive. My doctors scheduled it at my request, because I was so upset and wanted to know that I hadn’t already lost one or both babies. If we made it until the following Monday, my anatomy scan was scheduled for that day – 18 weeks and 1 day.

The days at home were brutal. I was in so much pain. My digestive system remained in haywire mode and I was in so much pain that there were times I couldn’t make it back to my bed from the bathroom. I just had to stop and lay on the floor and try to breathe. I’ve had long standing issues with my digestive system that I was told would require surgery one day. Everything that was happening exacerbated them, making the pain even worse. The fact that I had to remain sitting down all day compounded it further. There’s nothing like having a sore bum and not being able to get off it.

I had been told that babies can continue to replenish their fluid, so I was drinking as much water as I could. That meant that every single time I moved at all, water would leak out of me. It was constant, and I was constantly wet. As the days passed, the rash on my hands spread, and eventually wound up covering my bottom as well. My OB said dermatitis, and told me to use aquaphor on my hands, but that seemed to make it worse. It was really just one more type of pain along with the rest, but it sucked because it meant that I couldn’t hold DH’s hand.

Tuesday morning came and we breathed a small sigh of relief, because there were no signs of labor, and my temperature was still looking normal. We’d crossed the 48 hour milestone. The next one would be one week. If we made it a full week with no infection, there was a good chance of keeping the babies in, at least until viability at 24 weeks. I wasn’t sure how I felt about that, since I knew babies born at 24 weeks face incredible struggles. Only about half survive, and a large percentage of the survivors have permanent impairments due to prematurity. I didn’t want that for my girls, but I certainly didn’t want to lose them, either, so mentally it was tough. I spent many hours out of each day holding my belly, talking to them, and telling them to stay put, stay healthy, and keep growing. I must have told them their dad and I loved them about a thousand times over that week.

Throughout all of this, my family was AMAZING. They got a mini fridge, and moved that and a toaster over up to my bedroom, so I could get myself food. They moved a big armchair up to the bedroom, looking out the window, so I could sit and watch the antics of our squirrels as they tried to eat all the crab apples from our crab apple tree. They cooked the most amazing food. And something that touched me an insane amount: they got a folding table and chairs, and brought it up to the bedroom so that we could eat meals together. That one bit of ‘normal’ made so much of a difference to me. I was in pain. I couldn’t eat much. I felt awful. But it was still so wonderful to sit with the people I loved and have a normal lunch or dinner.

My friends were also awesome. They sent me a ton of things to keep me busy on bed rest – coloring, books, candy. They checked in on me all the time. You can see LBG and one of the coloring books here, along with my chair looking out the window. This was pretty much my view for that week. Bed and the chair.

To our relief, Wednesday’s ultrasound showed both girls were still alive, but Zoe’s AFI was only .6. Knowing that we needed a value of 2 or greater to develop her lungs was tough. The check showed no sign of infection, so we headed home to continue to wait.

Thursday I woke up ok, but my temp went up to 99.2 at 2 pm. I called my OB’s office, and was told to stay home unless it broke 100.5, but that they’d schedule a Friday appointment to check me out. Thursday afternoon I hit 100 exactly, and thought the end was probably near. By 2 am Friday, I was down to 99.2, and I was back to 98.6 at 7 am Friday. At the appointment, my temp was normal and as I had no uterine pain and no foul discharge, I was sent home again, with instructions to keep monitoring things and come back for my anatomy scan as planned on Monday. Our next milestone was going to be Sunday morning, and we were all hoping I’d make it there.

Sunday morning I woke up in pain like always. I feel like I’m being a whiny baby complaining about it, but the pain was so severe that it really became my entire world. Pain, leaking water, fear, and gratitude for my family was pretty much all there was during that week. I don’t know why, because nothing at all was different, but I had the very clear thought on Sunday morning that I was almost to the end. I’d been telling myself the whole time that I could live with this overwhelming pain for the next four months if it meant saving Alexis and giving Zoe a chance, but Sunday morning I had this feeling that I wasn’t going to have that option. I reminded myself that Sunday was a week out, my temperature was still good and I’d stopped bleeding. The only thing that was leaking was clear, metallic smelling fluid, and that meant our chances were better than ever. That didn’t stop the feeling.

Sunday proceeded like a normal day. Breakfast and lunch with the family. Lots of water. Diarrhea. Pain. Leaking fluid. Sometime around 2 or 3, though, leaking fluid turned into another gush. I got up, and more fluid soaked through the pad I had on. I changed, but it happened a second time, at which point I called DH and told him we should head to the hospital, because I thought Alexis’ water had probably broken, too. DH, MIL, my dad and I all got in the car with a bag for my husband, and headed in. I called my OB’s office and left another message. Like the previous week, they called back while we were en-route and let me know that L&D would be expecting me.

Worst Days of My Life

I’ve thought for a while that I should share more of Alexis and Zoe’s birth story. It’s not a happy read, but I want to remember it. I want to remember them. I’ll split this into several parts because it’s so long. Here’s the first part.

My mom was out visiting us in October. She helped prep the nurseries and she took care of our yard. Since I was still retching on the regular and puking on the occasional, DH and I were so grateful for this. Mom was scheduled to fly home the day I hit 17 weeks, and then come back for Xmas. We took her out to dinner the night before she left.

That night, I woke up in the small hours of the morning with intestinal cramps. I spent quite a bit of time on the toilet, then went back to bed, and got up a bit before 7 when I heard my mom up. I went to start toast, and realized I had to run to the bathroom again. When I got there, I had more intestinal cramps, but just when I thought that was done, there was another big cramp, and a gush of air and water. I got scared for a minute, and tried to tell myself that I’d just farted and peed simultaneously. I told myself I was just getting scared for no reason, and I’d feel silly about it later. I sat still for a while, and when no more water came out, I stood up slowly. Still no more water, so I cleaned up and went back to the toaster. DH came downstairs right about then and started to make eggs for breakfast.

While standing at the toaster, there was another gush. I could feel it soak through my pants. I ran back to the bathroom, confirmed that it was clear fluid, and yelled to DH and my mom that I think my water just broke.

No surprise, they weren’t expecting to hear that from me. I was trying to keep my shit together, so I told DH to get my car keys and my wallet from upstairs, and I was going to grab a towel, head to the car, and call my OB while DH drove me to the hospital. My mom grabbed her suitcase and we headed off, while I left a message with my OB’s answering service.

The on call OB called me back while we were en-route, and told me he’d make arrangements to have me admitted straight to L&D triage, where they’d do a swab and potentially an ultrasound. DH dropped mom and I at the curb and the front desk ER staff got me a wheel chair and navigated the maze up to L&D. When we got to the triage front desk, I could only manage to get the words “I’m 17 weeks pregnant with twins” out before I started sobbing too hard to add “and I think my water just broke.”

They got me into a triage room, got me undressed, and at first things looked mostly dry. When the nurse went to do the swab test, the water started coming again. She sent the swab to the lab. I told her that I’d never before so badly wanted to be told that I’d peed myself. Eventually the results came back: amniotic fluid. DH, mom, and I were taken back down to the u/s to see exactly what was going on.

The u/s screen showed right away: both girls still had heartbeats, and both girls were still moving, but one baby no longer had any fluid. The sonographer told us that it was Baby B, Zoe, whose water had broken, which was a shock to everyone. Usually the lower baby’s water will break. I was sent back up to triage after that.

At that point, the doctor from my practice came in. They told me they’d admit me for observation overnight, and so MFM could consult with me in person on Monday, but that there wasn’t anything they would do to stop labor if it began and chances were pretty good it would. MFM later reiterated this – that the risk to me of trying to keep the babies inside once labor started after pPROM was too great. DH and I got no say in the matter. We were told that I’d most likely deliver within the next 48 hours, and the most likely cause of the rupture was infection.

Somewhere in there, my mom caught a cab to the airport. We were taken to a room in L&D, and had the most amazing nurse, Jeni, with us for most of this time. Like many of the nurses, she held my hand, gave me hugs when I needed them, and was so incredibly compassionate that I’ll always be grateful.

We called my MIL, and she arrived late that evening on the first flight she could get. I sent my dad and step mom a text to tell them what had happened. They reached out to DH, told him they wanted to come out too, which they did. I was so incredibly grateful for all of their support. The day before my water broke, DH, my mom, and I had gone to Babies ‘R Us to register. Mom found this absolutely adorable stuffed giraffe, and bought it for the girls. At some point, DH went home and brought the giraffe back, to watch over us. This is as unflattering of a picture of me as possible, but you can see LBG (Little Blue Giraffe) keeping an eye on things.

At that point, the waiting game began. I was told to monitor my temperature every four hours. Anything over 100.5 would indicate infection and require me to deliver. So would any foul smelling discharge. I had lots of clots and bleeding, but nothing that didn’t just smell metallic.

The next morning came with no fever, no discharge, and no labor. 24 hours past rupture was the first milestone, so we were thrilled. MFM came and told us that it’s so rare for Baby B’s water to break that they couldn’t predict what would happen. I might already have an infection, since that’s the most common cause of pPROM. If I didn’t, then Baby A, Alexis, might block infection from getting in, allowing them both to make it to term.

Then the MFM shared more bad news. Babies need amniotic fluid for lung development. Unless Zoe had an AFI of 2 or greater (fluid level), her lungs probably wouldn’t develop, and she’d likely die at birth. With this knowledge, we were sent home for home bedrest. By the time I left the hospital, I had a horrible rash over both of my hands. Red, painful bumps. I was also in an incredible amount of pain from my digestive system, as I kept having bowel movements and cramps every few hours, which had already triggered hemorrhoids and a fissure. I knew 48 hours was the next milestone, and I just prayed we’d make it.

Bear With Me

It’s now been a month since we said goodbye. I have lingering complications that have left me in more pain than I could have imagined. If they don’t resolve on their own, I’ll be facing surgery at the start of January. I’ve been told that surgical recovery is two weeks of true agony when heavy narcotics are needed, then six weeks of pain. This terrifies me because I left the hospital on 800 mg of ibuprofen every 6 hours, 650 mg of Tylenol every 4 hours, and 2 Ox.ycodone every 3 hours, and that did NOTHING for the pain I was in. I can imagine how much worse it will be after surgery, and I know that the drugs just don’t help. Overall, more difficult choices ahead.

That all reflects the physical part of healing. The emotional part is another matter. I have my good moments and my bad moments. I don’t think the postpartum hormones help, or the fact that I’m still in too much pain to return to my “normal” life, so I’m left with little to do. I hope the physical healing can help to be a catalyst for the mental healing. In the interim, I hope you’ll indulge a few things I want to share.

I only took one “bump” picture my entire pregnancy, because I was so sick the whole time I didn’t feel like it. Although the girls are gone, I feel like I need to share this. Why? Because it’s one of the last good memories I have with them. Because I hate that there are times it feels like they weren’t real, and by sharing this photo, I can disprove that feeling. Because, out of everything that happened that I might have controlled, I get the most upset that I never got to see or hold Zoe, and this photo reminds me that I got to hold her for 18 weeks and a day. Maybe just because it’s a talisman to me, that proves that DH and I can make beautiful, healthy babies, so that gives me hope that one day we’ll get to be great parents to babies we can take home and raise.

The other picture I want to share is of the girls’ bears. I mentioned how amazing the Fairview Southdale nurses and doctors were. Also amazing are two other parents, who also lost a child at Southdale. They started a program to give small teddy bears to other parents delivering babies who will never come home. This is a lousy picture, taken via my cell phone a few hours before we left the hospital. But these bears are so precious to me. Seeing them snuggle each other gives me hope that my girls are out there somewhere, taking care of each other.  In the first days home, DH would bring them to me, and we’d just hold each other and the bears on the sofa and talk to our girls. I have conversations with the bears most days. Today we went to the picture window and I showed them the six deer who were grazing in our yard. Am I crazy? Well, of course, we’ve known that for years! But does it help to think that maybe our girls are up there somewhere, listening as I talk to their bears? Yes, it does. To the parents who started this program: I am so, so sorry that you went through a loss, but so, so grateful to you for what you’ve done with it.

So Many Thanks

I feel like there are so many things I need to say about what’s happened in the last few weeks and months, but I’m not sure I have the words to say any of them. Let me start with a few things that are top of mind, and that’s thanks to our amazing families and to the incredible staff at Fairview Southdale hospital.

My mom came out to visit around 16 weeks and did an amazing job getting the nurseries ready for the girls. I was still feeling pretty awful, but mom took care of the painting and the yard. Had things ended the way they should, our girls would have had beautiful rooms thanks to my mom’s help.

When Zoe’s water broke at 17 weeks, my MIL flew out and was there by 9 that night. My dad  and step mom were there by 6 the next morning. I would not have made it through the last two weeks without their help and love. They took care of everything for me when I was stuck on bedrest and half out of my mind with pain. They also stayed with us when I went into labor. My Dad and MIL drove DH and I to the hospital when I was sure Alexis’ water had broken, and they stayed all night in the hallway and waiting room until Alexis was born, and then continued to stay until close to midnight that day after Zoe was born and I was out of surgery and conscious again. They kept us fed and clean and kept us company when being alone would have been too hard. I will never have the words to thank then enough.

I also need to recognize the amazing staff at Fairview Southdale hospital in Edina. From the first night there when Zoe’s water broke through labor, two rounds of surgery, and a multi-day stay, every single nurse and doctor we interacted with was compassionate, attentive and understanding. When my OB was called away to deal with another emergency as I delivered Zoe and started hemorrhaging, the anesthesiologist (who has the exact same name as my dad) stepped in with no hesitation and in all likelihood saved my life. I will be forever grateful to the team there for their care and compassion.

There are quite a few more thank yous needed for friends and colleagues who kept us in their prayers, but I’ll save that for another day. For now, I am so grateful for the wonderful people who did everything possible to make the worst possible situation as ok as possible. 

Zoe Grace and Alexis Marie

I am someone’s mommy.

At 12 weeks, we had the CVS done that showed we were pregnant with two healthy girls. I spent the next five weeks in a state of joy, despite the horrible morning sickness and constantly feeling terrible. We shared with family and friends and we waited excitedly for March when we’d get to meet our girls.

Their names were Zoe Grace and Alexis Marie.

At 17 weeks exactly, Zoe’s water broke. The three of us held on together for one more week on home bedrest, in the worst agony of my life due to other complications. At 18 weeks, Alexis’s water broke as well and I went into labor.

Alexis Marie was born a few minutes before 8 am on November 7. DH and I got to hold her and tell her how much we loved her. Those minutes will always be some of the most important of my life. She was so beautiful and perfect and tiny.

When I had not delivered Zoe nearly 8 hours later, I was moved from Pitocin to cytotec. I started having convulsions, and was not entirely conscious when Zoe was born around 5 pm. I know DH held her up to me so I could say goodbye, but I have no memory of that. He tells me she was perfect, too. I believe him.

I started hemorrhaging after delivery and was taken to the OR for two rounds of emergency surgery. I lost about half of my blood volume, but the doctors were able to stabilize me and save my uterus.

Zoe Grace was 8 inches long and 6 ounces. Alexis Marie was 8 inches and 5.5 ounces. I love them both more than I thought possible and miss them more than I can say.

I don’t know what the future holds, but I do know that these were my girls, I am their mommy, and I will always love them.