One day at a time

As of today I am 25 weeks. As of this past Thursday I was placed on hospital rest.

A little over a week ago I went in for a routine ultrasound. I was 23 weeks 5 days. Apparently my cervix seem to be dialated internally; the external portion was still closed, so effectively I was funneling more than I had previously.

While talking to the doctor, who was quite concerned, I was asked one of the first difficult questions I’ve been presented with along this journey. I was asked if I were to deliver within the next few days would I want to resuscitate the babies. My first thought was what kind of question was that? Of course I would want to resuscitate them! But, thinking about it logically I understood what she was getting at with the question. Given the number of issues a child born at barely 24 weeks could face some folks might be inclined to let the baby pass. Thinking about the mortality of these babies was so hard, given that I have been hoping to make it to 24 weeks, that this was the point where they would definitely have a chance, and realizing just that – that it is a chance, not a certainty.

Upon confirming that I would want them resuscitated, the doctor said I then needed to receive the steroid shot to help the babies lungs develop so they’d have a better chance of surviving if I delivered. So, I got sent to another wing to have the shot administered. I was told that I’d be hooked up to the monitor for 20 minutes to check heartbeats and for contractions after being given the shots, and that this was routine. However, when I got on the monitor everyone’s routine demeanor changed when they saw that I was contracting regularly, five within the span of ten minutes. The interesting thing was that I couldn’t feel anything, no contractions, none of the tightening, which surprised everyone.

The next day was a whirlwind. Everyone thought I was going to deliver. I was given magnesium sulfate for 24 hours to protect the babies’ brains and hopefully slow the contractions. After a miserable 24 hours, because that stuff makes you feel terrible and woozy, things seemed to have settled down. Fewer contractions, and I still couldn’t feel them.

The doctor in charge of the NICU came to talk to me, just to give me an idea of what it would mean to have babies at 24 weeks, and what happens in the NICU for babies younger than 28 weeks. While the conversation was informative, it was also terrifying. I do think it helped me, having that knowledge of what to expect, it was just overwhelming and heavy. So heavy.

When I made it officially to 24 weeks all the doctors were so happy. They were saying it was a legit miracle that I’d made it this far. I found out that the doctors hadn’t thought I’d make it that far after seeing what they saw at 16 weeks.

I thought I was in the clear, as well as some of the doctors, and was ready to go home. But one of the doctors, the one in charge wasn’t comfortable letting me go home, and was going to have me stay in the hospital a few more days, just to make absolutely sure.

And it’s good that she made that decision.

This past Tuesday, after describing some odd pain and pressure near my bowels I had a cervix check and it turns out I was 100% effaced and 4cm dilated. Also, after being put back on the monitors it was discovered that I was contracting regularly again, but again, I could not feel them. Once again, everyone thought I was going to deliver. The NICU was called, I was moved back to labor and delivery (as I’d been moved to the less urgent ante-partum wing). I went back on the magnesium, their thinking that this might get me at least another 12 hours before I delivered. I called my support people, thinking I was going to deliver soon. I don’t know if I’ve ever been more nervous and scared. The docs asked questions about how I wanted to deliver and what their recommendations were (c-section, but vertical given the early stage of the of the pregnancy, meaning the likelihood of ever delivering vaginally in the future would pretty much be impossible, or heavily discouraged).

Amazingly, the magnesium, which they decided to keep me on for almost 24 hours instead of 12, worked. Contractions slowed to a stop, and no more weird sensations in the lower abdomen.

After this event, the doctors all agreed that I could not go home, that at this point, I would need to stay in the hospital until I delivered the babies. The next goal was to make it to 25 weeks.

Today, at 25 weeks exactly, I am a mix of emotions. I made it another week. I am happy but anxious. Every day I stay pregnant is a victory. But everyday I wake up wondering if this is it, if this is the day. I’m focusing on the future, focusing on full term, but it is hard. Every new or random sensation makes me anxious and paranoid. Being in the hospital indefinitely, which I know is the best for all of us, is hard. I’m obviously willing to do whatever it takes for these babies to make it into the world safely, whatever it takes to give these babies a fighting chance. But I also have to acknowledge that this is hard.

I will say that I’m happy I’ve made it to 25 weeks, and I hope for many more weeks. I’m happy the babies consistently seem to be doing well. That they are both a good weight, above average even. I try to focus on these things when I can’t get sleep because of all the monitoring and vitals checks, all the poking, all the food issues (accommodating a vegan is apparently quite challenging). I try to focus on the the babies when things are hard.

Coincidentally, this past week I got random messages from a number of people I haven’t talked to in awhile. Folks just checking in to see how I was doing, or to say they were thinking of me. It’s as if the universe alerted them to the difficult week. I also learned that many folks in my family have been praying for me. They say this is why I have made it this far and will continue to make it. We may differ in our modes of faith, but I was/am so touched by all the support from them, their collective effort. I still can’t quite put it into words, but I was/am grateful.

I have come to accept that the future is unknown, that anything can happen with the start of every new day. I think I’ve made peace with that. Again, this doesn’t make it easy, but accepting this uncertainty does help. At this point I just have to take things one day at a time.

So here’s to another day.

Shifting moods

Well, first off – I’m 22 weeks as of yesterday. Things right now are going pretty well. At my appointment last week my cervix was between 1.7-2cm (the pessary makes it hard to get an exact measurement) which is an improvement from last time. So the pessary is holding. I’m also measuring about 5 weeks ahead, which seems to be spot on for carrying twins.

The past two weeks have been quite different than the weeks preceding it. After a lot of deliberation, I decided to share what was going on with more people, via Facebook, and I’m glad I did. The amount of love and support I received from people caught me off guard. People reached out, offered listening ears, offered to reach out to friends who had gone through similar situations, offered to help with things I can’t really do (grocery shop, clean, etc.)…It was a bit overwhelming, but in a good way. I was/am so moved by all of it. It kind of reset my emotional barometer and I started to feel more positive.

I also met with a new midwife, one that I’d wanted to work with earlier but seemed unlikely given the situation. I’d actually talked to her previously on a phone consult before all of this began, but this was the first time I met with her and had a proper in-person consult. I’ve never felt so good leaving an appointment. She was the first person who spoke to me with positivity. I know the doctors are being practical and realistic with me, which again, normally I appreciate, but when none of them will entertain my thoughts or questions about anything past 24 weeks, it’s discouraging. They all look at me with a mix of pity and powerlessness. I recognize they are managing risk, that’s their job, but it really takes a toll on the psyche. The midwife was a combination of practical and hopeful, and she was able to work with all of me, not just my short cervix and my vitals. She also reminded me of my strength and gave me things to focus on. This was the type of care that I was looking for. Someone to check in with the pregnancy, the babies, and me, physically and emotionally. In this current situation I need that even more, and she did just that.

So, I decided to work with her. I’ll still have my MFM and they will be working together, which is nice. I’ll also be switching hospitals to the one I originally wanted to be at once I realized I had to have a hospital birth.

The combination of all the support from friends and the new care provider really boosted my morale. The slightly longer cervix also helps. I’m also focusing on trying to make it to 40 weeks – 40 weeks is the goal. Now, maybe I don’t make it that far. But being in that mindset has actually worked better for me than the mindset of just trying to make it to 24. I don’t know how to explain it. I obviously want to at least make it to 24 weeks, and doing so will be such a huge milestone, but I should still mentally aim for full-term/40 weeks. I should still focus on that to help manifest that. That is what is working for me right now.

It’s complicated

I’ve been doing a terrible job keeping this blog updated at regular intervals. I think I’ll just have to accept that and do the best I can. But, part of the explanation is below.

I’m 20 weeks today. Technically just about halfway there. The babies are doing quite well. Both are healthy sizes and weights and, while they are starting to differ in size, their sizes are still close enough to one another that it’s not an issue.

However, around 16.5 weeks I learned that my cervix had become short. Very short. As in .6cm short, when it should be 3cm or above. At that point the MFM doctor who oversees my ultrasounds (since I was seeing midwives) said she was very concerned, but that, at the end of the day, there was nothing they could do, so I’d have to see what happens. She said if it was a singleton pregnancy they could have placed a cerclage (a stitch in the cervix to keep it closed) but that it was not recommended for twin pregnancies. (I later did some research and ultimately agreed with that assessment, as the risks outweighed the benefits.)

I was pretty devastated, especially because no one really seemed optimistic. The common refrain was wait and see. They did put me on pelvic rest and reduced activities, but there was not much else. They don’t prescribe bed rest much anymore, or rather, doctors are moving away from that unless the situation is extreme because bed rest itself can cause a slew of problems. Granted, once I got to the point where I could do some research, I was seeing that people with my cervix length were being put on hospital bed rest, yet my doctors were not recommending it. The discrepancy in recommendations was disconcerting.

One of my best friends did some research after I called her in tears and found women who’d had cerclage pessaries placed instead of the cerclage. The pessary is essentially a silicone ring placed around the cervix to help hold up the uterus and/or alleviate pressure on the cervix caused by the pregnancy. It is also non-invasive; the cerclage stitch is a minor surgery (and runs the risk of infection), whereas the pessary is just inserted like a diaphragm. So at the next emergency appointment I had less than a week later, I asked one OB about it and he didn’t think it would help, but referred me back to the MFM and she not only thought it was a good idea worth trying, but went ahead and placed it. It was painful to me, as the actual pessary is large, but you don’t really feel it once it’s in.

Emotionally, all of this has been very hard. Learning that there is something wrong, something that you can do very little about, is very hard. Learning that my risk of losing the babies is around 80% given my particular cervix length, is very hard. I try to be as positive as I can, but the reality of the situation is too heavy sometimes. When I told my mother, one of the things she said was that I can’t live in fear, that I can’t live in the fear of it. That has been helpful, but again, I still have my moments. The few people I have told all say some version of needing to be positive and then talk about normal pregnancy things. I appreciate that, but sometimes those conversations are difficult. I know they are trying to make me feel better, but I can’t ignore the reality of the situation.

At my latest appointment three days ago, I learned that my cervix is at about 1.2cm. So the pessary has helped a little. The cervix is still quite short, but it is something, and at this point I will take anything I can get. I am still on pelvic rest and significantly reduced activities. No prolonged standing, no lifting. I can walk around the house, but need to sit as much as I can, laying down is better (though not for too long). They also put me on vaginal progesterone when this started (to support the uterus and prevent contractions), and I still take that.

At those last appointments (I meet with a regular OB and an MFM, no midwives anymore, which is another story) both doctors said that the goal right now is to make it to 24 weeks because that is the point of viability. There were lots of “if we can make it to 24…”, “we want to get to 24…” etc. That hit me really hard. That, and how one of the doctors felt almost 100% certain these babies would be born quite early, again, if I made it to 24 weeks. It’s one of those things where, I recognize the reality of the situation, but hearing it put so plainly struck me, and I’m still dealing with the impact. There is so much uncertainty on whether I will even make it to 24 weeks. With each week that goes by, another hope, dream, and desire for this pregnancy goes out of the window. No homebirth, no midwives, dwindling chances of natural delivery, no normal. At this point I just want the babies to stay in, but instead of hoping for 39-40 weeks, I’m at “let’s just get to 24, anything past that will be a bonus.” The NICU is now very likely to be in my future, and, realistically, it’s likely to be a long stay for the babies, which comes with it’s own risks and consequences, health-wise and developmentally. I just want two healthy babies and it’s not clear whether that will be the case.

I feel them move often. It used to fill me with excitement, but now it is mixed with a bit of anxiety. The lowest baby, Baby A, is very low, and their head is constantly rubbing against what is now the open funnel of the top of my cervix. I was told that the bigger they get and the more they move up against it that the more stress there will be on the cervix. I want moving, active babies, but every time Baby A is very active it makes me nervous. I hate feeling that way.

The rest/reduced activities is hard too, especially because it is just me. I have to rely on others so much more now, and I realize I don’t have as many people as I thought I did. Or maybe I do and I just can’t see it. I don’t know. But simple things like washing dishes, making food for myself, picking up something I dropped, I can’t really do. Cleaning is not often. Laundry is not often. I know in normal pregnancies these actions can become hard, but they are especially hard in this case because of the added stress they place on the cervix. I have to be strategic about which days I shower (since daily is too much) and when I wash my hair because of the prolonged standing. I order food far more often than I used to, which helps in terms of staying off my feet, but doesn’t help my budget that is getting tighter and tighter as I’m still in the process of closing on a condo (which has hit another delay).

I had a fleeting moment where I wondered if I’d made a mistake in not waiting to do this with a partner. The moment was in passing, but it was very real. When you think about having a baby on your own, you know that there’s a chance things might not go smoothly, but I don’t think you think about it seriously, or you do and think you can handle it. I knew there was a possibility things could not go smoothly, but I assumed the chances were small. But here I am.

I’m actually still staying with friends at the moment because of the last-minute condo debacle from two months ago when the last one fell through at the very last minute, leaving me homeless. They have been helping me a lot, but that is not forever. They’re actually out of town currently and all the things I can’t do or need help with seem magnified, and representative of what it will be like once I move into my new place.

I’m fighting the urge to just withdraw from everything and everyone because this situation feels so isolating. I don’t feel like I can talk to a lot of people about it, for the aforementioned reasons. Telling people about the situation also takes an emotional toll on me, constantly recounting the issue. That and, on the flip side, it feels like I’m being a burden when I express concerns about the realistic aspects of this. Some days I’ve considered joining an online forum, but some days I have a hard time reading other people’s experiences. It’s a mix of hope and heavy that I’m not ready for yet, though I feel I would find support there. I’ve read that working on your registry or continuing with baby planning can really help during this time, as it gives you something positive to focus on. I’d started working on my baby registry and buying some clothes around 16 weeks, but both of those have been on hold because they are emotionally taxing right now.

On the flip side of all of this, I am happy that I have made it this far. I’m 20 weeks. A little less than 3 weeks past when I first learned about the short cervix. I’ve made some progress. The babies are healthy. I’m committed to doing whatever I need to maximize my chances. Their chances. Every morning I tell myself that I can do this. Every morning I say out loud that we are all going to make it through this. Sometimes my resolve is shaken and my faith in those statements is thin, but I say them anyway.

So that’s where I am now. Just counting every day that goes by as a success and one step closer to my first goal of 24 weeks.

Uncertainty

So another gap in posts. This one was a bit intentional, largely because I was concerned about miscarriage, and more than just my general (elevated) concern.

A few days after I got to 8 weeks and graduated from my fertility clinic, I experienced a weird gush of vaginal fluid. While I was at work of all times. There was a little blood in it, but barely…and then that was it. Nothing. I freaked out initially, but then, after quickly looking things up online, saw that it may not be a major issue, but only a doctor could tell. So, somehow, I went about the rest of my day. But the following morning I decided to call the midwives group I was going to be seeing and spoke to a nurse. Based on what I told her, she thought I was having, or had, a miscarriage and told me to go straight to the ER.

Many hours later it turned out everything was fine, that maybe it was a blood clot. Both babies and sacs looked good. Heartbeats good. I was sent home and was to follow up with my doctor in a week or two.

After that, I had some bleeding, and passed what I assumed were clots/old blood. So, it just became a waiting game. Everyday was filled with a little worry due to uncertainty at what was happening. As such, I couldn’t bring myself to post.

I had a 10 week sonogram at my first midwives appointment and everything was ok! Not only that, but they were really moving around, which was amazing to see. I was a bit awestruck. That appointment (and the persistent nausea) really made me feel better and felt like a little weight (of worry) off my shoulders.

So, here I am now, a day shy of 12 weeks, and I just had my NT scan. The results of that were worrisome for one baby, so they’re doing a more descriptive blood test (NIPT). I have somewhat mixed feelings about this, but I’m honestly just glad they’re looking alright and moving around. I also don’t want to do any invasive testing because, at this point, what is, is, so I’ll just see what happens when they’re born…When written like that it seems really blasé, but I’ve actually thought a lot about this and, short of a lethal condition, I will deal with whatever comes as it comes when they’re born.

I can’t believe I’m nearing the end of my first trimester. While I know it’s still early and we’ll have to see how things go, I also know that, statistically, my risk of miscarriage is fairly low. I’ve been able to focus less on that and more on other things, which is nice. Every time I see them, I feel a little better. Since they’re twins, I’ll be seeing them often, even with being in midwife care.

All of this has seemed to go by really fast. It’s amazing to me, that I’m here at ~12 weeks.

Wow.