6 months, and almost 10 weeks

This is the most compact description of where I am. Yesterday was the half-year anniversary of the birth and death of A & C, and tomorrow I will be 10 weeks pregnant with Strawberry Baby.

Going through all the documents for taxes was painful. I have everything from last year in one big pile (not recommended), and re-encountering the hospital and cremation documents I shed more tears than I have in a while.

And then I had a difficult conversation with my boss, about how much I am getting done lately and how that isn’t exactly enough. She was trying to acknowledge that the last months have been really hard on us, but still. And I think she probably has a point, but still. It has barely been half a year. And half a year is extremely short to “recover” from such a loss, and at the same time extremely long when you miss your babies every single day. It reminded me of how hard it had been to go back to work, how that was so completely the opposite experience of what I thought going back to work after having a baby would be like. Half of my colleagues never even acknowledged that anything had happened at all, and once they find out I’m pregnant again they’ll probably think everything is fine now. The conversation also brought back more basic considerations, although not necessarily of the sort I’d want to discuss with someone who is childfree by choice. I had always thought that, if I ever had to decide between my career and my family, I would pick my family. And then, when we were finally on the way to building said family, due to some cruel twist we lost our daughters. I felt like the choice was taken away from me, at least temporarily. I don’t want any other choices taken. Plus, more simply: only very few experiments can reach a magnitude that does not pale against “my babies died”. Everything else just seems so much less important, still, at least on bad days. I’m not sure that is ever going to change. (Of course bringing food on the table and getting rent paid still are kind of important.)

Yet, given all that happened last year, we feel so blessed to be where we are. 9w6d, or maybe 10w1d, depending on who’s measurements you take, pregnant with our little Strawberry. Everyone keeps commenting how perfect everything looks. The nurse who did our “graduation” ultrasound at the RE was very gentle after I told her of the spotting I’d had, and the fact that my cervix felt sore for a week (!) afterwards. In part because of my already-sensitive cervix, and in part because my insurance thinks that 3 suppositories per day are too much to cover, we decided to keep me on IM progesterone until 12 weeks (usually my clinic switches to suppositories for the last 3-4 weeks).

Less than a week after that, I saw my MFM/OB. He’s a very sweet guy and was so happy to see me pregnant again, it was really touching. The nurses first needed to “close” my previous pregnancy in the computer system, which I thought was odd – the clinic and the hospital where I delivered are affiliated with the same university, you’d think they could communicate that bit. Both nurses also vaguely remembered me but couldn’t quite place me. When I explained that I’d had a stillbirth last year, the first, younger nurse just said “so that’s what it was”. The second, older nurse still seemed a bit confused, but looking through my records she saw that I’d had twins and remembered, and came over to give me a hug. It confirms my experience that more experienced practitioners have found ways to deal with such terrible situations – perhaps, sadly, because they’ve seen it often enough, and thought about what to say.

All the exams and scans went well, the MFM pointed out the spine and arms and legs and other body parts I could not exactly recognize, but was glad to hear were developing as they should. Pictures in the usual location. Now they will start requesting 17-hydroxyprogesterone shots for me, which have been shown to reduce the chances of pPROM and cervical shortening in at-risk patients, and start transvaginal cervical length measurements at 14 weeks. But before that, we have the NT scan. Doing yoga on the artificial grass gym rooftop today, I encountered a ladybug. It reminded me that there had been one of his distant cousins crawling over me on the way to the NT scan with A & C, only to reappear in my hair after the scan. I’ll take it as a good sign.

balloons and ashes

One of H’s cousins went through a similar loss as ours, pPROM at 18 weeks and then the birth of her tiny daughter two weeks or so later. When we met over Christmas, one of the things she said that stayed with me was that she found it so terrible having to leave the baby in the hospital, instead of taking it home to bury it in the garden.^*

We don’t have a garden, but that moment of having to leave the room with my babies to never see them again on this earth was one of the hardest things I’ve had to do. We had a wonderful nurse that did everything she could to make it a little easier for us, but of course, it was still hard.

We had decided relatively quickly to have the girls cremated. The social worker had given us a list of mortuaries. Calling them was hard, especially since the receptionist at the first place asked why I was calling after I had given him a summary of the situation. But at the next place I got a lovely woman on the phone, who immediately expressed her condolences and gave me what seemed like a reasonable quote, but said that she’d talk with her supervisor to see if they could do it for less. Ten minutes later, she called me back to tell me they could cremate our daughters for 250$.^**

I initially dreaded not just the call but also the visit and the paperwork, and halfheartedly considered asking friends to do it for us. But I’ve come to realize that this was one of the few things we were actually able to do as A & C’s parents. We won’t ever get to write notes as for why they didn’t go to school last Monday, but, hard as it was, we got to arrange their cremation. Because we are their parents.

They really tried to make the paperwork as easy as possible for us. Getting all the names correct was important – after all, these were among the few official documents we’d ever get with their names in print. H and I have different last names, and the girls have his. “Usually the babies are under the mom’s name”, she said. Do you know what’s wrong with this sentence? “Usually”. There shouldn’t be anything usual about this.

A week or so later, I went back to pick up the ashes. With the nomad scientist life, finding a suitable permanent place for them seemed difficult. We decided to scatter their ashes at sea – we both love the sea, and after a while they will be “close to” us in all sorts of places across the world. I sobbed when I got into the car. I didn’t want to scatter my children’s ashes, I wanted them here with me, alive. H repeatedly said we didn’t have to go. Once I had calmed down, we drove down the coast and found a bay between two banks of fog. The water felt like it was freezing cold. We stayed to say goodbye, and then to watch a beautiful sunset.

I’m not sure why these memories are coming up so vividly now. Perhaps because we are considering a beach vacation, and the beach, like so many other things, now reminds me of my daughters?

When we left the ER recently, we passed the gift store, and H said he had been hoping so much that the next time he’d be in the hospital he’d be able to go into that store and buy a little present for me and our child. I was already pregnant again, and hopeful that we’ll bring this little one home, but that showed me how hard it is for him. Peering through the window, we considered which of the balloons^*** he could get us, come November.

^* She had her first child without any problems, and later brought home another daughter after getting a cerclage in the 2nd trimester (by choice, it wasn’t clear what caused the pPROM, but she did get her rainbow baby, which is the most important part).

^** I have since heard that some places take care of stillborns for free. It’s not so much about the number for me though. I think any form of supporting parents in this terrible situation is more appreciated than we may be able to express in that moment.

^*** I have never had or bought one of these huge colorful printed balloons, but we’re so ready to celebrate that a smiley-flower or a gigantic butterfly seem appropriate. I so hope we’ll get there.

birth story part two: in between

Thank you so much for staying with me as I try to process our daughters’ birth story. While the last part was perhaps the most traumatic, I feel that this here is the hardest to write about in all honesty, as it involves some choices we had to make. But that is what I need to do – it won’t help if I process a censored version of what happened. Also, if anyone ever finds themselves in a similar situation, I’d want them to know that they are not alone.

We were directly taken to a delivery room. They took my vitals, tried to put in another IV, decided I was stable, eventually succeeded with the 2nd attempt of the hand IV. My memory isn’t very clear on all the details, and in particular the order of events here. But even then I was aware of the strange limbo I was in: just having given birth to my firstborn, and yet still pregnant with her sister.

H was talking to the doctor about saving little A. He’d been talking about this with the firefighters, the doctor in the ER, anyone. I think it was what kept him going. Unfortunately the doctor – who was very kind and down-to-earth, and very understanding of the fact that this was an awful situation with no good options – didn’t give us much hope. Buying one or two weeks might be possible, she said, but we’d need at least four. She recommended inducing because of the high risk of infection that could endanger A, my uterus (in case they had to do a hysterectomy to save me) or my life. They left to give us time to think.

When my waters broke we were hoping for a miracle, a way to save both our babies. Now, one of them had been stillborn. There had been nothing we could do for her. I think seeing her perfect but tiny body also changed something for me. I understood how hard it would be for doctors to help her. And now there was a cord hanging out of my uterus, a well-lit 6-lane highway for bacteria. Plus, there was a problem of timescales – bacteria grow from a single bug to a full-sized colony overnight, while my tiny baby would need weeks and weeks.

At some point the nurse – a kind and positive woman, and I mean positive in a very supportive and not obnoxious way – came in to check on me, and also asked if we knew their gender. We said the ultrasound tech thought they were both girls. She asked if we had checked. Um, no. She asked if we wanted to see and hold our baby, if we were ready. She did this in an almost excited way – I’d like to think she does it in the same way with a live baby. I said I was as ready as I’d ever be. So she brought over little C, who had been in our room all the time, cleaned her up very gently, checked – obviously a girl – and gave her to me. With the legs stretched out she was longer than my hand, and surprisingly heavy. I held her close to my heart. We were both so incredibly sad.

At one of the check-ups, my temperature had gone up to 99.7F. The pains in my belly were getting stronger – back then I thought they might be indications of infection, but they could also have been early contractions. That same kind of pain intensified later, before “full” labor started. H was getting seriously worried about losing me. With very, very heavy hearts we decided to induce. And I’m not sure we’ll ever fully come to peace with this decision.

I was given a drug to promote dilation and contractions. The doctor said they were hoping I’d deliver “sometime before tomorrow morning” (I was 2cm dilated at that point). They’d increase the dose if things didn’t move far enough. H wanted to go home and pick up some stuff for himself for the night, as well as for me for the way home, as I had arrived wearing only the t-shirt I slept in. They suggested him to go now, nobody knew how fast things would progress (or not). They also suggested me to take a nap, which I thought was highly unlikely. But my wonderful husband had grabbed the stuffed animals I had bought for our babies, so I curled up in bed with C and the toys and held my baby and cried.

birth story part one: an unexpected home delivery

We were actually kind of hopeful on Thursday when we went to bed. We had made it more than 48 hours out of the preterm rupture (apparently most moms go into labor within 24h after rupture, then lots more within 48h), my temperature was still fine, and I didn’t notice any contractions. I had had an episode of uncontrollable shivering in the morning, and I had some weird localized pain in my belly every now and then, so clearly it wasn’t all sunshine and roses, but we had hope. I had read a number of PPROM success stories online, but also scientific papers with statistics on larger numbers of cases, which were much less encouraging*.

On Friday I woke up around 6am, feeling lots of pressure, which wasn’t uncommon at this point. I went to the bathroom, but found that peeing didn’t relieve much of the pressure – this was a bit odd, but I was too tired to think much of it. H woke up, thinking he’d heard me scream. I told him everything was ok, and we went back to bed.
I woke up again after 7, still feeling lots of pressure, and decided to try the bathroom again. But as I sat down I realized, no, this pressure was coming from somewhere else… I got up, grabbed a few sheets of paper as I had no idea what was coming, and called for H. Moments later, I held my precious little C in my hand. I don’t know if I pushed at all, if so, very little. It wasn’t painful, physically.
I sat down on the floor, largely in shock. The I-don’t-feel kind of shock. I talked H through finding a piece of yarn to tie off the cord (for some reason I thought that was important), calling 911, packing the last items for my mostly pre-packed bag.

Looking back, I regret not immediately hugging my baby. In part of course this wasn’t possible, with the cord. In part I was just in too much shock. But she was (is) my firstborn, and I feel bad about not giving her the love she deserved in that moment.

The firefighters arrived very quickly and were very kind and professional. They clamped and cut the cord, gave me extra oxygen but decided I was stable, put me onto a chair-stretcher-thing and took us to our hospital. We spent just enough time in the ER for me to be hoisted from their stretcher onto the ER bed, then L&D communicated that they wanted me up on their floor.

* That’s the drawback of actually looking up the statistics, they aren’t always comforting. We had a friend come over (with a 3-course dinner!) a couple of days ago, and he could commiserate – his father died from cancer earlier this year, and there had been many appointments when the doctors painted a rosier picture than what our friend, having read a number of papers, knew to be more likely.

kindness, and names

Thank you all so much for your words of sorrow and support. Each and every one of them made me cry, but not only from grief, also from gratitude for the support and love you’ve shown us, and the fact that so many people remember our tiny babies with us, and that you see how beautiful they were. I can’t even begin to explain how much this means to me.

We lit a candle for each of them yesterday, for Pregnancy and Infant Loss Remembrance day. H had brought them back from grocery shopping with a friend who kindly offered to help us out (we don’t have a car), not knowing about the remembrance day but just thinking that it’d be nice to have candles for our girls.

I want to tell you about the names we gave them, but won’t actually spell them out because of Google. Hopefully the hints will be enough. We didn’t have names for them when they were born on Friday, but it’ll be easier to tell the birth story with them, especially because Twin A will be little C and Twin B will be called A…
They are named after star constellations. One of the names was already on our (long) list of candidates, and we wanted beautiful and special names for our beautiful and special babies. I’ve always loved it, but worried that it’d be challenging for, say, a toddler learning to say her name. The stars form the shape of a W, and it’s also the name of the turtle in a children’s book I love. When I mentioned it, H immediately remembered that on Tuesday, on what I thought might be the last night we had with our babies, I wanted to go outside to show them the stars. He went looking for another star constellation that would make a good girl’s name, and found A. A is right next to C (well, it looks like that from down here anyway) and contains a galaxy with the same name that apparently is a “twin sister” of the milky way. (We didn’t know about the twin sister bit until a few days later though.)
We go out every night and look up to them. And, believe it or not, we’ve seen shooting stars a few times.

1/2

Baby A was born this morning, at home. A precious tiny girl.
We’re in the hospital now, waiting for her sibling.
I still can’t believe this is happening.

not worse

Thanks so much for all your support!

Getting up before dawn this morning, I felt like the parents of the sick little girl in the new Star Trek movie.

There was still no fluid to be seen around baby A. We had really hoped to see at least a bit of fluid… (Does anyone know how long it takes for that to reaccumulate?) She wasn’t curled up in a ball as she’d been two days ago though, which I hope is good (because that was awful to see). The heartbeat seemed low to me – they didn’t measure it so I don’t know the numbers. Baby B still looks fine. My cervix was 2.5cm on the transabdominal US – we decided against transvaginal US because of the risk of infection. This makes it harder to get a good measurement, but as nothing will change because of that number anyway, it’s not worth taking a risk. The doctor concluded that it was “at least not worse”.
I’m still waiting to hear back on antibiotics – it appears that, before 24 weeks, this place really doesn’t do anything, although in the case of antibiotics the main reason seems to be “no data” (duh) and of course the risk of resistant pathogens. I’m thinking the benefits may still outweigh the risks in this case (but I’m not an MD). Hospital bed rest would be considered from 24 weeks on.

The prognosis they’re giving us still isn’t any better. Sigh. The doctor we saw today was also talking about all the problems preemies may have… it wasn’t exactly encouraging. From what I read online, this is typical – worst-case scenarios are mentioned, not success stories. We’ll have another scan in a week, also to assess growth. I hope we’ll make it until then (and much longer!).

To end on a more positive note – I have finally started to feel them move. Which is wonderful – it helps me cling to the hope that they can make it.

ruptured

I was getting used to my mostly-couch routine, and the babies seemed to be hanging in there. Then yesterday I suddenly felt as if something was weird, and then there was a big gush of fluid. More fluid when I got to the bathroom, and even more.
We went to L&D, who confirmed that my membranes had indeed ruptured, and saw that baby A had very little fluid. We had hoped that they’d be able to save at least one baby, but apparently that’s really difficult – the main risk now is infection, both for the babies and for me. At 20 weeks, they’re much too young to survive. The options we were presented are “expectant management”, also known as wait-and-see, and termination. Gulp. We certainly weren’t able to chose the latter, not after all these steps it took to get here.
They offered to keep me in for the night for observation, but H said he’d much rather have me home with him, unless there was a risk. Hospital germs tend to be worse than homegrown ones, so they don’t want me to stay for long anyway. My cervix was still at 1.5cm, and no contractions, so it didn’t seem as if labor was imminent. After being explained the risks three times over, we went home and cried. I have never seen my husband cry like this. That alone was heartbreaking.
The good news is that I haven’t had any more leaking or gushing of fluid since coming home. Resealing of membranes is rare, but possible. My cervix went into mucus overproduction mode, which I hope also is a good sign – maybe it is trying to regenerate the mucus plug?
Basically we now need a miracle: no infection, no contractions, resealed membranes and refilling fluid. We have an ultrasound tomorrow to see how things are going. If you have good thoughts to spare for us, or stories from other PPROM survivors, please share.