A faraway star called hope

Mum100-blog-IVF-hope-uncertainty-incomplete-miscarriage-early-pregnancyPseudo sac, pouch of Douglas, foetal pole – a fresh batch of medical phrases I picked up in hospital on Thursday.

If nothing else in IVF1, my vocabulary is growing.

The day starts well

My friend Jessie visits. We met at university sixteen years ago. Somehow we managed to get degrees, despite our commitment to the pub over the road. Jessie has been through so much with pregnancy, including miscarriage, stillbirth and successful pregnancies. Thank God for friends with experience. There is no awkwardness when I tell her my news.

Jessie tells me about having no pregnancy symptoms with her two kids. She tells me about having an early scan with her daughter, where the doctor wrongly diagnosed an incomplete miscarriage. We talk about the loss of her son and how difficult people find it if she mentions him. We also speak about her two teenage kids – who were a tot and a pregnancy bump when our friendship first started.

We head out for lunch. We order juice and healthy-sounding burgers. We pick up our conversation with the plot leaps in friends’ lives, since we last met up.

Suddenly, I have an intense cramp, so strong that I feel sick. I try to stay with the conversation. There is that daft British instinct not to make a fuss (stupid habit!) but then comes the heaviest bleeding yet.

Thankfully, common sense returns. I tell Jessie what is happening. She understands, immediately. We make our apologies to the café staff and head home.

Game shows and new words

Dad 100 and I drive to hospital. We go straight to the Early Pregnancy Assessment Unit. A sleepy lady on reception gives me a clipboard with a form to fill out.

During our afternoon in hospital, we discover that Channel 4 afternoon telly is the same as thirty years ago – Fifteen to One and Countdown – except both shows have different hosts now. The presenters I grew up watching are now retired (William G Stewart) and dead (Richard Whiteley). I laugh at the swift reminder of my age.

Within ten minutes, we see a nurse who takes brief details. Back to the waiting room for more quiz questions – I get one right about the Pixar movie, Inside Out (great film) – then we are called for a scan.

The sonographer is an Irish man called Robert. I ask him to show me what he can see on the screen. He shows me my right ovary, normal he says. I look at the grey ball with black follicles, an asteroid in space. Then we whizz over to my left ovary – abnormal, he says, due to an endometriomal cyst. Old news, Robert, old news.

Robert says there is fluid in my pouch of Douglas – er, sorry? my pouch of whom exactly? It turns out there’s a cavity between my uterus and rectum, named after a Scottish anatomist called Dr James Douglas. The good doctor explored this area of female anatomy in the early 18th century. He then named body parts he discovered after himself, including said pouch!

A jellyfish head

Then Robert shows me my uterus. The consulting room suddenly feels wide open, roofless. Time stops for at least twelve heartbeats. Robert points the device at the top of my uterus. He shows me what looks like a jellyfish head – a floaty ghostlike appearance.

“It looks like a small gestational sac,” Robert says.
“Oh, really?” I say.
Dad 100 and I peer at the screen, hopeful, a bit tearful.
“But I can’t see anything inside it,” Robert says. “There’s no foetal pole or yolk sac, so it may be a pseudo sac.”

A pseudo what?

When I am dressed, I ask Robert to explain further. He is perching on the clinical waste bin by the door, however – he’s a scan and run kind of guy.

“Take a seat in the waiting room,” he says. “The doctor will call you soon.”

Cue the purple plastic chairs and the theme tune for Countdown. Dad 100 and I lose ourselves in the letters and numbers games. I get a 7 letter word – PLASTER. I award myself an extra mark for the relevance to our location.

The doctor calls

Nargis is her name. She is friendly with a round face, around fifty years old. I am reassured by her slightly messy hair. In the consulting room, Nargis invites us to take a seat.

I peer at Robert’s report on her desk, while Nargis types up notes. Have you ever tried reading medical words upside down? It’s a skill, I tell you, to cross your eyes in exactly the right way, whilst trying not to be caught out.

I learn from my snooping that I’m 6 weeks pregnant. The expected delivery date is 26th January 2017, tucked between my birthday on 16th January and Dad 100’s birthday on 4th February.

I see Robert’s report of the 2mm gestational sac and I feel that wide-open-stand-still feeling.

Then comes Robert’s diagnosis: “incomplete miscarriage.”

Okay, I’ll stop reading now.

Report

“There is always a chance”

“So, what is happening actually?” Nargis says. She has an uplifting smile.
“No idea,” I say.
“We have seen a very tiny sac. It could be a pseudo sac or it could be a pregnancy sac. At this moment, we are not sure.”
“So, there is still a chance that there’s something in there?”
“Might be, I don’t know, but the pregnancy hormone level suggests that it could be an incomplete miscarriage or ectopic. We have not seen any foetal pole. No yolk sac.”

Nargis takes time with us. She asks questions about the level of bleeding and pain. She doesn’t rush us, which is the best gift any doctor can give. We can think and breathe and ask questions. Nargis takes some more blood from my arm, to test beta-HCG levels and iron.

“We will do another scan on Tuesday and we will test your hormone levels again,” Nargis says. “Then we will discuss what management we will do.”
“Is there still a possibility of things working out?” Dad 100 asks.
“I am not sure at the moment. There might be. There is a sac. To see something inside, the hormone level should be around 1000.”

I ask Nargis about other explanations for the sac. Do they sometimes form without anything in them? She says it could be that – a pseudo sac – an impression that I am pregnant. Sometimes the uterus will do that, apparently, in response to a pregnancy of unknown location. It can also mean an incomplete miscarriage. She says the fluid in my pouch of Douglas may have come from the gestational sac.

“In your experience, Nargis, are there ever cases with this amount of bleeding, where things work out?”
She smiles, takes a breath.
“Be truthful, it’s okay,” I say.
“It could be a miscarriage. I don’t want to give you false hope. But there is always a chance. So please carry on with the progesterone and oestrogen until Tuesday.”

Mum100-blog-IVF-hope-uncertainty-incomplete-miscarriage-early-pregnancyThere it is again – a faraway star called hope, twinkling constantly.

Omelettes and psychics

At 4.15pm, Dad 100 and I finally get some lunch in our favourite caff near the hospital. Spanish omelette, chips and peas. Oh, the relief of food. We both feel calmer with grub to demolish over a debrief session.

We agree – we have not yet heard conclusive proof that it’s over. There is the possibility that it was too early to see anything in the sac. I tell Dad 100 about Jessie’s story of her early scan and the wrong diagnosis of incomplete miscarriage. How we reach for hopeful stories at these times. We devour our food like hungry bears and head up to the counter to pay.

A woman calls out to me from across the café.
“I like your shoes,” she says.
“Thank you.”
She has wild dark hair. She is wearing clothes that could either be pyjamas or comfy casuals. She fixes her eyes on me.
“I am psychic,” she says.
I’m always intrigued by strange characters, so I stop for a chat.
“What’s your name?” I say.
“Sybil. Do you have an education, a husband?”
I say yes for simplicity, although Dad 100 and I are far too lazy bones to organise a wedding.
“Ask me something,” she says.
“Okay, why not? What do you think will happen next Tuesday?”
“It may go up, it may go down,” Sybil says. “But really, the most important thing is balance.”
Sybil then says something about taking care of my heart, which I don’t quite catch. Her parting line is this, “you need to believe in something.”
“Thanks Sybil, that’s good advice.”
“Thank you for talking to me,” she says. “I am staying in the hospital. You can come and visit me there, if you like.”

Outside the caff, it makes us smile. That we still have hope, despite all the odds. That we still believe there may be miraculous news, possibly even delivered by Sybil the psychic!

It’s great to find out that hope is stronger than fear.

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How not to do the two week wait

We learn along the way in this glorious pond called life, don’t we? And what I’ve learned since our double embryo transfer is:

  1. It’s called the two week wait for a reason
  2. I am not very good at waiting

Yesterday, our third beta/HCG result was 321 – up from 37 last week. We have managed to baffle our doctors enough for them to refer us elsewhere. Next Tuesday, we’re off on a mini-break to the Early Pregnancy Assessment Unit, to have a scan.

Er, rewind a minute – was that number in the hundreds? Three hundred and twenty one? Yes, it was my loves! There is absolutely no denying it now. I am pregnant. Astonished and thrilled.

Mum100-blog-how-not-to-do-two-week-wait-IVFYesterday, the nurse said again that our beta/HCG numbers are still too low. ‘Possible ectopic’, ‘unviable’, ‘not what we normally see’. Despite these predictions, I’m taking in the warm encouragement from our community online. The medics do not know everything – and until our scan next Tuesday, I am sticking my fingers in my ears about possible complications.

Instead, I will believe in my baby or babies growing inside me, until such time as someone proves conclusively otherwise – as one IVF friend said to me this week, medical professionals often think the worst.

The way I see it is this – let’s say I have two kids. I’m at their sports day, standing by the race track with the athletics coach. Ready, set, go! The coach blows the whistle and all the kids fly off the starting blocks, except mine. The coach blows again, long and hard. My kids make a slow start but they’re having a go. The coach turns to me and says: “rubbish runners, your kids, look at all the others so much further ahead.”

What would I do in this situation?

  • Would I cheer my kids on?
  • Would I feel proud of them for having a go?
  • Would I still believe they can finish the race?

Of course I would! I would never give up on them and go home. And if the athletics coach piped up again – ‘some kids should just take Art class instead’ – I would bop his boney bum with a baton!

I just need to be a mum right now, to the little life or lives growing inside me. I am truly grateful for this strange and wonderful experience of being pregnant.

THANK YOU MOTHER NATURE FOR OUR FIRST BFP!!

From this point forward, I solemnly promise to:

  • Believe in the life or lives inside me
  • Talk to my future kids everyday
  • Take it day by day
  • Have more fun and distract myself more
  • Stop believing that doctors and nurses know everything
  • Refrain from panic buying another holiday (we have to cancel our holiday next week, but I honestly don’t mind)
  • Eat a combination of healthy food and treats, as it doesn’t have to be perfect
  • Avoid Dr Google – my symptoms are what they are, no amount of misinformation can change them


Mistakes I’ve made…

I also wanted to record here all the mistakes I made in our first two week wait, mainly as impulsive reactions to the ongoing bleeding. If we go through IVF again, I can remind myself what not to do.

Transfer day: two 5-day blastocysts come home to mamma – the happiest day.

1 day and 2 days past transfer: nothing to report – I am confident I will breeze through the 2 weeks.

3 days past 5 day transfer: Cramping, dark blood, mild panic sets in. I Google my symptoms. My TTC sisters cheer me up.

4dp5dt: Fresh bleeding begins – I think it’s all over. I draw a butterfly for about three hours – therapy!

5dp5dt: Bleeding, full flow – I decide the time is now to get a strong body. I go for a run around our local park.

6dp5dt: Bleeding, full flow – sod the TTC menu, I eat an enormous pizza.

7dp5dt: Bleeding, full flow – we book flights to Ibiza and a hotel in Formentera. I dance around the flat to celebrate. Infertility, you will not beat us!

8dp5dt: Bleeding, full flow – I do a handstand to prove I’m still young.

9dp5dt: Bleeding, full flow – we book airbnb apartment in Ibiza Town and more dancing.

10dp5dt: Dark blood – first beta/HCG test is 10 – the hospital say it’s a negative pregnancy test. They advise me to stop taking Progynova and Cyclogest. After encouragement from the TTC community, however, I request a second blood test. Hospital agree, although it’s not something they normally do.

11dp5dt: Trace of dark blood.

12dp5t: Bleeding stops – eat a large curry.

13dp5dt: Second beta/HCG test is 37 – total surprise at the rise. The nurse says the “unviable” word.

14dp5dt: an uneventful day – the official end of the two week wait. Clearance from hospital to go on holiday – hooray!

15dp5dt: Cramping, trace of blood.

16dp5dt: Spotting fresh blood.

17dp5dt: Spotting fresh blood.

18dp5dt: Another uneventful day – hooray.

19dp5dt: Dark blood.

20dp5dt: Dark blood.

21dp5dt: Dark blood and mild cramps. Third beta/HCG test is 321 – utter disbelief and delight, I am pregnant!! Nurse says they suspect ectopic. She refers us to Early Pregnancy Assessment Unit. Advised not to travel. Start process of cancelling our holiday bookings.

22dp5dt: Dark blood and mild cramps. Early Pregnancy Assessment Unit call. Scan booked for Tuesday 6th June at 11am.

How long will the butterfly stay?

Mum100-blog-IVF-red-admiral-butterfly-bleeding-after-ivf-embryo-transferI wanted to draw a tortoiseshell butterfly today. I don’t know why. The image came to me when I woke up, fluttering around my mind.

I used to see these butterflies as a girl, every summer, growing up in the countryside. I loved their flame orange wings with bold black and gold markings. I was fascinated by their furry brown bodies and dotty antennae.

They decorated the flowers in our garden. Their landing pads were bright petals and green leaves, in the beds my Mum created. They flapped from flower to flower; pairs danced in the sky.

I remember trying to catch tortoiseshells in my hands. I approached with the focus of a tiger, steady and soundless. Close in, I held my breath. I raised my hands, and so quickly, I cupped them around a butterfly, catching petals in my hands. Mostly, I missed; the butterfly flapped up and away, zig-zagging across the garden.

Eventually, I caught one. I held my hands in a ball shape, to give enough space and light. I carried it with me, those delicate wings tickling my palms. Then there was the pleasure of opening my hands, a magic trick reveal, before the tortoiseshell took off to the sky.

Occasionally, the butterfly sat in my hands, its tiny feet resting on my palms. That was the greatest wonder of all, those rare times when the little creature chose to stay with me – even for a few extra heartbeats, when it had all the freedom to fly away. In those moments, I believed the butterfly knew I meant it no harm. When it did leave, I watched, both delighted and sad to see it go.

Now I live in the city, I don’t see butterflies so much. In fact, I can’t remember the last time I saw one. I should get out to the countryside more, to remember those glorious warm summers of childhood. They were endless golden spaces, certainly my memory has made them so. Where we lived, we were surrounded by wheat fields and long grass. There were giant pines and horse chestnuts to climb, apples and blackberries to pick, big ditches to jump and scrape our knees. There were miles of farmland to explore, the roar of green combines at harvest gave such a thrill.

Any adventure was possible in that landscape.

Day 4 past our double embryo transfer

Today, the cramps are much stronger. Since 6am, I have been passing red blood. I have said my prayers of acceptance for whatever is happening to our beautiful blasters. Tears are coming and going. It really helped to draw my little butterfly this morning, there was comfort in that.

I am drawing lots of strength from the words of my IVF sisters yesterday. I know pretty much anything can happen in the two week wait, and still result in a positive pregnancy test. I have read about pregnancies in the IVF community that are nothing short of a miracle.

We spoke to the nurse at the hospital, who said to keep taking the medication and rest. There’s nothing else we can do in this waiting game. The nurse said if it becomes a full period, chances are we’ve lost them. I still have hope.

So, I’m taking to my bed today, to draw and write, read and sleep, whatever I feel like doing or not doing. Dad 100 is making some homemade tomato soup.

I am not in charge of the miracle.

This too shall pass.

Reassurance is human

Mum100-blog-IVF-day-3-past-embryo-transfer-spotting-words-wisdom-welcomeIt’s day 3 past my 5-day embryo transfer. I had mild cramping, low down. Over several hours, I passed a small amount of brown blood. I was frightened when it started. I went for a walk to the shop, to clear my head. A guy with a can of Tennent’s lager called out, “cheer up love”. I managed a smile, further down the road.

Mum100_blog_Doctor_Google_overgoogling_IVF_fertility_treatment_answersDr Google was at my door when I got home. He was making his usual guarantees of total certainty and fast results. I let him into my flat, having promised myself I wouldn’t hang out with him in the two week wait. Dr Google found an article that reflected back exactly what I wanted to see – this one on implantation bleeding. It satisfied me for about five minutes, but then I wanted more!

Thankfully, I soon realised that no amount of googling could solve the real problem. I needed connection with human beings, with people who have been where I have been, people who understand these strange tricks of the mind. So, I reached out to the IVF community on Twitter instead.

Some helpful and kind responses came very quickly (thank you sisters!) – reassuring me that my symptoms are perfectly normal, and more importantly, reminding me I’m not alone. I also asked Dad 100 for a hug.

I’ve learned again today that reassurance is provided by humans not internet searches. A Google search is a sprint in the darkness: I will get somewhere fast, but I might slam into a brick wall!

IVF sisters – I really appreciate your company and kindness. Thank you!