A new journey: peeing on a stick

I didn’t think when I started writing this blog that I would be writing about peeing on a stick. I also didn’t think I’d have another two losses after our first miscarriage (well, three if you count the fact we were having twins on one of those occasions). But here I am.

Peeing on a stick. Not terribly graceful. Not something you’d discuss over the water cooler at work. Initially, peeing on a stick for me meant using a pregnancy test. It’s ludicrous what I put myself through. I get myself a FRER (or First Response Early Result) test, so that I can test at the earliest possible time. Never mind the fact that when I have had a positive result (so, five times before) I’ve never got a positive test before my period is due. I tell my illogical and somewhat deranged self, “maybe you could get an early result! Why would you want to wait if you could find out early!” And so it goes on.

The worst part though is waiting for a non-existent positive result. I sit there in the bathroom. I squint. I move the test into the light. I tilt it.  I throw it in the bin. I get it out again. I repeat the charade for what feels like a squillion times until I have given myself a headache from focussing so hard and trying to make something exist that doesn’t: that elusive second line. Sigh. Not this month.

Last month we tried an ovulation predictor kit for the first time. I didn’t even know what OPK meant on my Fertility Friend app until last month. I’m not sure why, but I decided to go top shelf. We got a Clearblue digital test. It promised to give us our four most fertile days for optimal “love making”. My poor husband. “Love making” at the moment is more like a scheduled requirement than a recreational activity.

My period came and went. So I opened the Clearblue test. Yikes, it looked complicated. The instructions suggested I should have started testing the day before. Not a great start. I told myself I would start the next day. And then I turned to my old favourite Google and asked some questions: when to test, how long do you need to hold on before testing, morning, afternoon or evening… so many questions! I decided that I would aim to be consistent at least and test in the middle of the day, after holding on for a couple of hours each time.

First day of the OPK… nothing. Second day flashing smiley! I looked at the instructions and it meant… high fertility! It was early in the piece, only day 11. I was pretty sure I usually ovulated after day 14 so didn’t pay too much attention. The next day another flashing smiley. We were at a music festival all day and all night long. Maybe I’d done the test wrong I thought. It did say to use first morning urine and I’d ignored that.  In any case, we were absolutely exhausted, I hoped that we would have more opportunities.

On day 14 I was at work. I wondered how many other women have to attempt to smuggle an ovulation test into the cubicle at work. It wasn’t exactly discreet, I had to shove the test up my jacket sleeve and then walk to the bathroom. I hoped my boss didn’t call me into his office. My arm was abnormally rigid.  I took the test. The results take a good five minutes to show, so I decided I would go back to my desk and then surreptitiously look at the test in my desk drawer.

Thankfully no-one cottoned on to my bizarre behaviour. The elusive solid smiley appeared! According to Clearblue that meant ovulation was imminent. It was like receiving the call to arms. Turns out that two years of trying for your second child can make you pretty determined to conceive.

The next two weeks were spent wondering if I’d stuffed up the test. I don’t think I did, my period arrived exactly two weeks after the test claimed I ovulated. Sigh. Back to peeing on a stick again.

 

 

Another year on

I got my period today. In a moment our chances for conceiving this month evaporated. I felt myself slump and fade into a moment of sadness.

That moment was nothing thought compared to the meltdown I had yesterday when I took a pregnancy test and, even with the strongest squint, there was no hint of that big fat positive. I cried so much. I felt myself being dragged back to the lows that followed our termination. So much pain, and anger, and sadness, and helplessness. It sucked. I thought we were doing so well and then, bam.

I could feel myself having an angry imaginary conversation with a friend. Yelling at them that they had no idea what it was like to nearly lose your job because your mind is elsewhere for months on end, to feel physical pain in your heart every time you saw a woman walk past with a perfectly round baby bump, to sit alone with your thoughts for hours trying to guess whether this month might be the month that the nightmare comes to an end. I felt so angry. So trapped in an endless shitty nightmare.

I did my best to imagine all the people in the world who are in a shittier place than us. To be grateful to live in a beautiful country, in a nice house, with a wonderful and supportive husband, and to have a gorgeous son. I feel guilty sometimes how self-absorbing this journey to pregnancy is. I know it frustrates my husband. I can understand why.

Today, though, I am resigned to the fact that 2016 holds no hope for us. I’ve changed my focus to that arbitrary line in the sand that is 1 January 2017. A new year.

A year ago I thought the same thing about 2015. My husband and I sat down beside the river at my in-laws holiday house and wept quietly on New Year’s Eve, knowing that the end of the year meant the closure of a chapter of our lives, but also meant that our little ones were gone and drifting further away from us.

Come on powers that be, haven’t we been through enough? Please give us a leg up and let 2017 be the year that we welcome our second perfect baby. I’m not ready to give up!

 

 

 

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.

 

 

 

 

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.