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.

All Clear!

Yesterday was the saline sonogram and FemVue procedure, used to test tubal patency.  I wasn't looking forward to it, but I wouldn't proceed unless my tubes were open, so the FemVue was necessary.

During the HSG I had done to check tubal patency last June, only one open tube was visible. It also showed that my uterus was almost fully blocked. I got very sick afterward. As a result of all that, we suspected that the images of my uterus were bogus, but there wasn't necessarily a reason to suspect that the blocked tube was false. Thus, I wasn't expecting good news on Friday.

Expecting it or not, good news is what I got! Both tubes are clear, and my uterus shows no signs of scar tissue. My RE spent a long time checking out my uterus via saline ultrasound. One of the absolute best sonographers was at the helm, so I know I was in good hands. They wound up pushing saline at least four times to get all the images they needed, and while that wasn't comfortable, it wasn't anything compared to what I've been through in the last few months.

Once everyone was happy with my uterus, and by happy, I mean that the words "that doesn't look too bad" were uttered, it was time for the bubbles. That triggered a tiny bit more cramping, but it was NOTHING compared to the HSG. Honestly, it wasn't any worse than the SIS itself. Best of all, everyone could clearly see the bubbles coming out the end of both of my tubes!

We ended by taking a look at my ovaries, which my RE said were looking great. Given my 0.4 AMH, I consider that high praise. Overall report was that everything looked good. My RE was surprised by how good it looked, as was I. I am doing 5 days of doxycycline now, and then we start my next treatment cycle on CD1!

I feel hope for the first time in months. But that's actually tough, because I feel like I'm being disloyal to Zoe and Alexis for feeling hope. As if I'm devaluing them by wanting to try again. I know I"m not. I know I will always love my girls. I know that no other babies that might exist will take their places, but it's still hard.

So, here is to my beautiful girls, who will always be my first babies. And here's to hope and a glimmer of possibility that someday the vacant nursery downstairs will be filled and the wonderful quilt my mom made will become the favorite lovey of a tiny person.

Cart, Horse.

This is putting the cart way before the horse, since I don't know if I'll have working tubes or a clear uterus, but if I do, I want to cycle again when my next period starts, probably in another 15 - 20 days. I've been trying to figure out why I want to get going again so badly, and I realized it's a mix of things. I've tried to explain below.

Spoilers

I am someone who always reads the end of a book first. I always look up the spoilers for TV shows I'm watching on Netflix. Why? Because otherwise I get so utterly stressed out about what will happen to the characters that I don't enjoy the book/show. If I find out the ending first, my stress level drops, even if I know it won't be a happy ending. Once I know how things will end, be it happy, sad, or otherwise, I'm able to relax and enjoy the book/show. Yes, I know how stupid this is when we're talking fiction. That doesn't change my experience.

That applies here, too. There aren't going to be any spoilers for how our TTC story ends, so that's not an option. But each extra month I'm not cycling is day that I could have been closer to finding out the ending and relieving the stress. We've said we'll do 3 medicated cycles. After that, we'll consider IVF. Either way, my intent, for my own sanity, is to be done by the end of the year. Either we'll be pregnant, or I'll put an IUD back in and call it done. If we can get there sooner, that's less ongoing stress on me.

Action

My reaction to deep stress is always to become more action oriented. The more stress I'm under, the more likely you are to find detailed to-do lists, a clean house, and an organized life. It's like I know there are things I can't control (e.g., getting pregnant), so I offset that by things I can control (cleaning, housework, finances). Sitting around and doing nothing when I'm stressed makes it worse. So if my tubes are working, I'm ready to stop sitting and take action. I still can't control getting pregnant, but I'll feel vastly better that I'm doing something, rather than nothing.

Anniversaries/Milestones

In the next few months, we have several tough dates coming up. The girls' due date will be in early April. Mothers Day is in May. If I play the wildly over optimistic card, the dates are likely to work out such that a successful March cycle would put our first ultrasound within a day or two of Alexis and Zoe's due date. I know the chances are infinitesimally small, but I would love to know my girls are watching over their siblings on such an important date if we were to get pregnant. Also, the girls' first ultrasound was on the due date from my first loss. I was expecting another MMC, so seeing those two heartbeats felt like the best news in years. I still think the girls' sibling was up there watching over them. It would seem right, in a circular way, to have my next u/s on their due date.

Life

I'm making conscious choices in my daily life for the purpose of getting pregnant. No alcohol. Almost no processed foods, no added sugars. I'm taking 19 pills a day (Ubiquinol x3, L-Agrinine x2, PNV, Pycnogenol, Acai, DHA x2, etc.). I'm utterly sick of the side effects from the PNV. The supplement cost runs over $100/month. It's 100% worth it if it helps avoid another miscarriage or stillbirth, but I want to be done with this as soon as possible. Another month delay means another month of living life prioritizing reducing changes of miscarriage over normal life.

Biking

I enjoy biking. I can not wait for spring to get on my bike and ride. When I ride, it's for hours. But that's not the best idea if I'm trying to get pregnant. If we try March, April, May, then I'll still have June - September to enjoy riding my bike with no concerns about the impact of endurance sports on TTC. Every month we delay is one less month of nice riding weather I can get.

So, I'm ready. I'm ready to try again. Now I hope and pray that my body will allow that.

Tiny Bubbles

I am cramping and bleeding!!!

You might wonder why that statement merits multiple exclamation points, but it's simple: I'm getting a period. That means that surgery seems to have made things better. With the Asherman's, my last pre-surgery period bordered on non-existent. That's because the scar tissue prevented an endometrial lining from forming. No lining = light period. No lining also equals nowhere for an embryo to implant. So evidence that my lining is restored is a big, happy deal.

This leads us to the next hurdle: tubal patency. In light of the infection I had in November, my cadre of medical professionals and I are all concerned about the condition of my tubes. If they're blocked, then I'm faced with the choice of IVF or the end of the road.

So it's time to test my tubes. But herein lies yet another problem: my last HSG went catastrophically wrong. It showed only one open tube and almost no uterus. Further, within hours afterward, I was swollen and in so much abdominal pain that I couldn't stand upright. My RE and I both suspect that the image was invalid because my body reacted badly to the HSG/contrast. All of this means that another HSG is off the table.

My OB mentioned a product called FemVue. FemVue's website, in addition to having a bunch of dumb looking women on it (actually, they look like smart women who have been told to look stupid for photos), will tell you that it uses bubbles and ultrasound to test tubal patency. There was one problem, though: my OB has never used it. She suggested I contact my RE to get her thoughts on testing my tubes. If my RE didn't have ideas, my awesome OB would learn how to use FemVue, and we'd proceed down that path.

So I talked to my RE's office. I had to make another appointment to talk to my RE, which sucks given my lack of insurance coverage, but falls under the heading of 'it is what it is'. The awesome news was that she's not only familiar with FemVue, but did research on it back in med school. I will be in very good hands with her. The less awesome news? Per my RE, her research findings were that women reported FemVue to be more painful than traditional HSG.

The end result is that I go in next Friday to see if bubbles can shed light on the status of my tubes. One more week and we'll know if there's a path forward or not. I'm scared. I'm not sure how much more bad news I can handle, but better to know than not, right?

It Wasn't Mylar

Surgery took place as planned back on the 18th. Being back at the hospital was indeed hard. I might have cried a bit in the waiting room. I might have cried again post-op.

Surgery itself went well. During the follow-up appointment, my OB told me, and pathology confirmed, I had scar tissue and embedded retained placenta in my uterus. I suppose it's no surprise with what happened.

My OB cleaned everything out. Due to the nature of the scarring (Asherman's), she left behind a balloon catheter for a week. It looked like this:

It was the most miserable thing I've dealt with in this entire journey. In my mind, I'd assumed that everything would stay inside me. I know that sometimes IUDs are used for Asherman's patients, and I've had an IUD that only had a tiny string in my vagina. I just assumed this would be similar.

Nope. Wrong on all counts. First off, that tubing is just slightly smaller than a quarter of an inch. Not at all like the string on an IUD. Having a string the width of a thread coming out of your cervix is a very different experience than having a .25" tube coming out.

Second, the tubing was long. Long enough to go through my cervix, and vagina, and hang a good few inches outside my body. From a practical perspective, that meant that anytime I moved, stood up, sat down, or rolled over, the tubing got pulled on a bit. Tubing that was going through my cervix and into my uterus. Imagine what that might feel like. On second thought, don't. It sucked, no one should deal with that.

Third, there was a hard plastic connector on the end of the tubing. It allows the balloon to be filled with saline. That's great. Except from a practical perspective. From that perspective, no matter which way the tubing points, that hard plastic connector is going to be jabbing you in a sensitive spot of your anatomy.

Finally, surgery made my digestive system unhappy. Consider the logistics of trying to keep a dangling tube and connector out of the way as you deal with what you have to deal with when your digestive system is unhappy. This is especially fun in my case, since I know the bacterial infection that took my girls and led me to this point in my life was largely comprised of bacteria found in the digestive tract. And here was a fucking superhighway going right into my ute.

It sucked. But it's out, and it's over, and now we move on to the next hurdle: figuring out if the surgery worked and if  my tubes are clear. More on that to come.

Full Circle

My journey to parenthood started December of 2015. That was when I got the first positive test. That was when I experienced the first rush of utter elation that I was pregnant and DH and I were going to be parents. January 15, 2016 was the end of the elation. I was 10 weeks, and there was no heartbeat on the ultrasound. I was scheduled for a d&c the following work day, January 18.

Two chemical pregnancies later, I had a saline sonogram done. It found scarring, caused by the d&c. I went through an operative hysteroscopy to remove the scar tissue, and then went on to conceive the girls with the help of a great RE.

After losing the girls, and knowing my history of scarring, I went in for a saline sonogram in late December. I wanted to be sure my uterus was clear to try again in March of '17. Alas, this SIS made the last saline sono look like the "good" version. This time around, there are adhesions all over. I suppose it's to be expected, in light of the infection and the fact that it took two rounds of emergency surgery to stop the bleeding after delivering Zoe. I've gotten an official diagnosis of Asherman's.

Thus, I've been scheduled for another operative hysteroscopy. On January 18. It has to happen then, because of the timing of my cycle and the fact that my OB only operates on Wednesdays. I won't lie, I'm hurting at the thought of being back in the same hospital on the same day one year later, with only heartbreak to show for the intervening year. I've come full circle, and yet instead of progress or joy, there's only pain and loss. I'm terrified at the thought of waking up in the same post op facility that I last woke up in the night I lost the girls. Those are memories I don't want to re-live.

I'm just hurting. I'm hurting because I miss my girls. I'm hurting because everything for the last year has been so damn hard. I'm hurting because I don't know if this will work, if we'll even be able to try again, or if our road will end here. I'm hurting because I know if it does work, and I do get pregnant again, I'll never be able to simply enjoy it - I'll worry until the moment I'm holding a living, breathing baby in my arms. I'll say it again, I'm hurting because I miss my girls.

Now I just hold out the hope that this surgery will work and the scarring will stay at bay long enough for us to conceive again. I hold out the hope that my ovaries can pull off one more pregnancy. I hold out the hope that this time, my uterus can keep my babies safe. None of this may come to pass, but I'll pray that January of 2018 sees my DH and I somewhere better than here.