You think you’re ok. Then…

It has been nearly six months since we ended our last pregnancy. I can’t quite believe it. Yesterday, I messaged a friend to say that I think I have come to accept our situation and have adjusted my expectations. Today, I broke down like a deranged mess in front of a whole toddler gym class when someone asked me how I was.

You see, today is our (latest) baby’s due date.

Today is also the day that I think I have got my period again, after trying so hard to get pregnant last month. This was the first month we have been able to try and get pregnant since we ended our pregnancy. I’ll explain why.

For a few months I had little to no periods, with horrendous abdominal pain. I’d never really experienced period pain before, so I visited a gynaecologist. He wanted to run a few tests to make sure I didn’t have Asherman’s.

We started with a HSG. It’s when a radiologist puts a catheter in your cervix and into your uterus and squirts dye in there that should flow around and show up on a screen. It was at the same hospital that we went to when we ended our pregnancy. That alone was enough to set me off. Then I had to take a pregnancy test. It felt cruel. Then I was back in a hospital gown again. Lying on a table in a brightly lit room again. This time there was no anaesthetic. The pain was excruciating. I honestly can’t remember ever being in so much pain. It was painful because the dye wasn’t going where it was supposed to. It was stuck in the neck of the uterus. I cried so much that day that the radiologist put a note on my report that she thought I needed psychological help. I had Asherman’s.

It was in December last year that I feared I had Asherman’s. I never thought I would be in the same situation again nearly a year later. This time I arrived at a private hospital. I was dressed in a gown again. I was given misoprostol again. I was led into the brightly lit theatre room again. The anaesthetist was there, she held my hand. The operation was a “success” if you put aside the fact I had bad scarring in the neck of my uterus. The gynaecologist said he had divided the scar tissue and we could start trying again immediately. We were so optimistic. It was a rare win for us in the crap of the last two years that we have plodded through.

Now though, as I sit on our couch writing this, I feel like I’ve come down to earth with a thud. We are still on a long road. We’re not even pregnant. If we get pregnant we and our little baby then have 39 weeks to survive, well, 35 if you minus out the first four weeks that you don’t know you’re pregnant. It’s hard to stay positive sometimes.

 

 

 

 

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The days after we ended our pregnancy

It has been over three months since I ended my pregnancy. I can say now with hindsight that I have more or less made it through.

The first week was bloody hard. We chose to escape the city and headed to a remote beach a few hours away. During the day we skimmed stones, dawdled on the beach, visited walking tracks and touristy places. In the evenings my husband and I sat with a glass of wine in our hands, often quiet, often upset, talking about how shit life can be across the dinner table. It was a surreal time, it was as though everything slowed down so we could marinate in our sadness.

Being back at work was hard. I went back a week and a day after surgery. The first person I saw from work was in the lift, she asked, “is everything OK with you?” I’d been out of the office for nearly three weeks without much explanation. I thought I would cry then and there. I looked away and said, “yes, fine thanks.” For the first couple of weeks, I was OK maybe one day in three. By OK I mean that I was able to do some work. The other days I stared at the screen, thinking constantly of what had happened. Trying not to cry.

Then I had a meltdown. I was sitting at my desk one Monday and for some reason I was fixated on our loss. I couldn’t think of anything else. I couldn’t look anyone in the eye. I achieved nothing at work. My anxiety grew. I couldn’t continue like this, I had billable hours to meet. My boss would lose his patience and eventually I’d get fired. Surely. I panicked. I decided I needed time out. I didn’t know how much time.

I talked to my husband and my close friends, they told me to be brave and to talk to my boss. So I did. And he was fine with my taking some time out. But then I faltered. It was as though the fact of telling my boss lifted an immense weight off my shoulders and all of a sudden I felt like I was able to keep working. What a mess I was.

And so here I am. I didn’t take any time off after all. I have terrible days filled with anxiety and sadness, and then great days where I feel a bit like the old me. It’s a process  I suppose.

The day of the surgery

We were asked to be at the hospital by 8.30am. We dropped our son at daycare and drove there with the music turned up loud and ragey, each putting on a brave face for the other. We sat in the waiting room and waited for an eternity, well, one and half long hours. It was not the best start to what you anticipate to be one of the worst days of your life. The explanation given to us for the wait was that I was right at the end of the surgery list of 14 women. It seemed to escape the staff that perhaps they could schedule patients to arrive at different times depending on their position in the list. My mind still boggles at how the hospital was prepared to leave  someone about to undergo a significantly traumatic procedure to sit in a waiting room for one and a half hours.

I met the charge nurse. She was short, probably in her 50s, with red coloured hair and matching lipstick. She apologised for the delay. She asked if I had been advised to bring in an urn or box. I cracked at this, “why does no-one ever tell you anything around here!!” I exploded and cried. “No, no-one told me that.” “Didn’t the social worker talk to you about taking the remains?” “No, but I’ve done it twice before. Can we take the remains?” I explained that the first miscarriage we had left me calling a blood test laboratory trying to find my miscarried remains after being given the wrong number by the hospital. “yes, you can take the remains home with you.”

The nurse then said something quite shocking. “Believe me, this is as hard for you as it is for me.” ARE YOU FUCKING KIDDING ME! I was incredulous. My husband was incredulous. I told her that I doubted that very much and set about disliking her for the rest of our stay. I was flabbergasted that she was the front-facing nurse of the ward. She then gave me misoprostol. I told her I knew what it was and swallowed it. It was a thousand times easier this time compared to my second D&C.

I then had to get changed into the standard issue backless blue hospital gown with underwear that they can cut off. So undignified. It made me cry. I felt like a nobody in that gown. The nurse came in to check that I was OK. She asked if she could give me a hug. That was nice of her. She said, “I don’t have any children either.” I told her, “actually I have a son, he’s at daycare today, he’s two.” Not knowing when to just shut up the nurse advised, “well you should be grateful that you have him.” I don’t know how I was so relaxed about that. Rather than punching her in the face, I let it roll off me. I had enough to deal with today. I was barely holding it together. I could chose not to let her get to me.

We were then ushered into a private room to wait for the misoprostol to take effect. All that really happened is that I began to shake uncontrollably from the cold, or from the drugs, I’m not sure. I ended up smothered in a hot air blanket. I listened to the clock tick away. My poor husband didn’t really know what to do with himself.

Finally it was time. I was wheeled up to theatre. I asked the theatre nurse to please hold my hand. She did. The anaesthetist was there. There was a man holding the blood pressure monitor. I thought to myself, “how can anyone perform this procedure? Doesn’t it break their hearts as much as mine is breaking? Don’t they feel as sick and guilty?” At that moment I completely lost it. I started sobbing uncontrollably and vaguely remember trying to sit up and protest something, although I don’t know what exactly. I felt the theatre staff quickly grab my arms and shoulders and I was almost immediately unconscious. I’m glad the anaesthetist put me out of my miserable state.

As I came to I wanted someone to hold my hand. I was eventually allowed to leave my bed to use the bathroom. And we waited to be discharged  in a small cubicle with another two couples. It didn’t seem the right place to be following such a traumatic event. That said, the anti-anxiety drugs were keeping me relatively calm. The anaesthetist must have really dialled up the dose, as I don’t remember feeling so at ease after my previous two surgeries. The nurse advised I was not to drive, to sign any legal documents, or drink alcohol in the next 24 hours. I had no intention of complying with the alcohol ban.

 

 

The day I learned our baby had Down Syndrome

After I learned from the initial mosaic result of our CVS that our baby “most likely” had Down Syndrome, everything changed. I no longer felt any hope for the pregnancy. All I felt was anxiety, fear, sadness and numbness. I refused to let myself consider the possibility of termination until I knew whether Down Syndrome was a certainty, but at the same time I placed all the feelings of love and excitement for our baby on hold. I was protecting myself and I felt ashamed in doing so.

I spoke to a geneticist at the hospital. I thought I might perhaps learn something from  her, but I didn’t really. She discussed my options at this stage. We would have to wait until 16 weeks for an amniocentesis, with the results likely to come out later that week. We could keep the baby, we could terminate. No pressure was placed on me to choose one way or another. If ultimately we choose termination though, I would likely need to be induced over several days, as surgical termination is rare after 12 weeks and not possible at all after 18 weeks.

This really threw me. I was sick at the thought of an induction. I briefly let my mind wander. I would need to take pills and then wait, overnight, a morning, perhaps an afternoon or even two nights for contractions and labour only to give birth to a baby that was no longer alive. There was no taking this baby home in the capsule and wrapping him or her up and rocking him or her to sleep. Jesus. I couldn’t bear the thought and I cried. I thought of all the woman who must have been through this process, whether by choice or otherwise, whether now or later in their pregnancies. It was heartbreaking.

I was so anxious when I returned home that I rang BEP. “You never mentioned that if we elected to end the pregnancy it would be by induction!” He replied that it was because I’d never suggested to him that we wanted to terminate. Still! He explained that surgery would most likely be possible, provided we were within the 18 week timeframe and one of the two surgeons available wasn’t on holiday. On holiday. Imagine having your path chosen for you because the surgeon is on holiday. I irrationally thought that surgeons shouldn’t have holidays.

I went to work on Monday. But 9am I completely broke down. I sobbed at my open plan desk, in front of my colleagues, our marketing manger, our librarians. My PA shuffled me into my boss’s office. Thankfully he was overseas and I was able to hide in there, blotchy red face and streaming eyes. I asked to talk to HR. Our HR lady came in. I explained everything. The first miscarriage. The second miscarriage. The possibility of things never returning to normal. The 12 week scan. The CVS. The real likelihood that we faced having a baby with Down Syndrome. She said something about one of her friends having a miscarriage. At the moment I realised she had no idea about the pain I was in. I went home.

I was coming home from the supermarket on Friday, just over a week since the initial CVS results came through. The geneticist rang. She said some lab test results had come back. I was mystified. As far as I knew the next step in our process was the amniocentesis at 16 weeks. We were at 14 weeks. “The final results from the CVS have come back. It usually takes much longer which is why the next step we considered was the amnio. The chromosomes are 100% Trisomy 21”, she said. I didn’t cry. I wasn’t shocked. Bizarrely I felt only relief tainted with sadness. It was game over. The worst two week wait ever was over.

 

 

A mosaic result

We were told by our obstetrician that the results of the CVS, the test where a needle was inserted through my belly into the placenta, would be available within 48 hours. I went to work because that was more bearable than waiting by my phone at home.

We had the CVS on Monday afternoon. On Wednesday from about midday I was anxious, staring at my computer screen, staring at my phone, over and over again. 48 hours came and went. It came time for me to leave work, I picked up my son and went home. My husband came home. The 6pm news came and went. The evening came and went. We went to bed quietly, staring at the ceiling.

I knew Thursday was the day. It had to be. I took my son to gym as a distraction with my phone up my sleeve. No call. By 11.30am I was consumed by anxiety. My son was in bed and I sat on the couch. I rang the obstetrician’s office, “oh sorry he is really rushed off his feet this morning, there’s a woman in labour and he’s trying to get to the hospital and back for his appointments at the clinic. He’ll call you at lunch, around 12.30.” I asked if she could tell me the results, “oh, I’m the stupidest one here, I wouldn’t know what they meant even if I looked at them”. It seemed like I was being fobbed off. Why wouldn’t he give me a call to say everything was OK? I could only assume it was because things weren’t OK at all.

I forced myself to go to bed and woke up at around 12.20. I watched every single minute tick by until 12.30. His lunch was at 12.30, he would call me then. But he didn’t. I watched the clock until 12.45. And then until 1pm. And then until 2pm. And then until 2.15pm. I couldn’t take it anymore. I called back the clinic and demanded to know what the hell was going on and why no-one would talk to me. They said the obstetrician would call me as soon as he could.

The call came at about 2.30pm. BEP explained that the results, “were complicated.” We fell within the one percent of cases which produced an inconclusive result. One percent! I couldn’t believe it. BEP and his ****ing statistics. It was laughable that we could possibly fall within the one, two, three percent yet again.

BEP explained that around 53% of the cells in the placenta were normal, and the remaining 47% positive for trisomy 21. What did that mean? It could mean one of three things: the baby was fine (well except for the high risk of a heart defect), but the placenta would be much less effective giving rise to risks to the baby; the baby’s genetic makeup was the same as the placenta; or that the baby had 100% trisomy 21 chromosomes.

I asked what the odds were, he explained it was, “highly likely” that the baby had trisomy 21. I asked, “well, I am a lawyer, and in my world “highly likely” means 80 percent, perhaps 90 percent.” He explained to me that “highly likely” meant greater than 50 percent, but that he could not narrow that any further. He recommended that I talk to a genetic counsellor. “Fine” I agreed.

To obtain a conclusive result BEP explained that I would have to wait another two and a half weeks until 16 weeks to have an amniocentesis, and then wait a further 48 hours after that for the result. I imagined how big my belly would be at that time. I felt ashamed that the thought filled me with dread.

I gave up hope that day. I think I began to grieve. It was all too much to digest. It should have been the happiest week that we’d had in years telling our friends and family our wonderful news that our son would be a big brother. But it was exactly the opposite. I was so stressed, so anxious, so numb and devoid of happiness. And so angry. The odds were stacked so heavily against us. A 1/13 nuchal translucency reading. Brought down to 1/10 with the blood test results. 47 percent trisomy 21 cells present. And even if our baby didn’t have trisomy 21 it was at high risk for heart defects and premature birth, amongst a raft of other things. If our baby was born at 26 weeks with a faulty heart, it’s chances of survival would be slim.

 

 

 

CVS (chorionic villus sampling)

A week ago I didn’t know what CVS was.

In a nutshell and from the perspective of a non-medical professional, it is a diagnostic  technique where a sample is collected from the placenta and used to test (at around 99% accuracy) for issues such as chromosomal abnormalities in a developing foetus.

I talked to BEP about my options following a high nuchal translucency reading. He recommended CVS, as the results are available in 48 hours. This was in comparison to our other option, a blood test, where the results would be available in around two weeks. The main downside of a CVS was a 1% risk of miscarriage. We decided that the risk was worth it for peace of mind. He also advised me that, even if the CVS came back clear we were far from being out of the woods. Apparently a high nuchal translucency reading is also related to other significant issues, like heart defects which could be fatal.

It was hard to take. I couldn’t face work on the Monday. My appointment was scheduled for 3.30pm that afternoon at the hospital. It was a similar feeling to sitting the most difficult exam of your life. I paced around the house, achieving absolutely nothing. My husband arrived home just before 3pm and together with our son we headed off.

I was crying by the time we reached the Fetal Monitoring Unit. The receptionist kept staring at me. I stared back. We were promptly called into a private room. I recognised the obstetrician there who would perform the procedure. He can be effectively summed up as Guy Smiley. Not really what you want on one of the more stressful days of your life. Guy Smiley advised us that my blood test results had come back. They weren’t good. Our risk was now one in ten. Guy Smiley irked my husband by repeatedly joking about, “sticking a needle in my belly” and nearly had his lights punched out by me when he said, “I had a one in two that was OK, you’ll be just fine!”

I had to stop crying when the CVS was performed. Guy Smiley placed some antiseptic on my tummy, and then a sterile sheet. He then used a needle to apply a local anaesthetic and then used another needle to gain the sample of placenta. I watched motionless on the ultrasound as he hacked away at the placenta. The midwife tried to talk to me about my son as though we were having a coffee together in a cafe. I didn’t respond.

It didn’t take long. Guy Smiley said I would know the result within 48 hours. The midwife said it might be slightly longer, as it was already 4pm. I recommenced my crying and toddled out to the waiting room with a fairly sensitive tummy. The receptionist stared at me again. And so began the excruciating wait for our results.