Creeping thoughts

September 1, 20158 Comments

I have had some spotting everyday since Friday – just the teeniest amount here and there. Every time I go to the toilet I feel sick to my stomach as I wipe and check the tissue with apprehension. I hold my pee just so I delay having to see the blood. I can feel my stomach starting to bloat, with a feeling of emptiness.

My app tells me I am 5 weeks and 5 days pregnant today and huckleberry is the size of a chocolate chip. But is huckleberry in there? Perhaps huckleberry is no longer there, may be he never developed after implantation, or may be he is hanging on for us to see him once again on the ultrasound tomorrow…

Time is dragging and the fog creeps thick around us, we try to keep busy, but it’s impossible to hide our deepest thoughts. I know that tomorrow is going to be a good day, whatever happens we will have some of the answers to many of our questions.

This post may sound depressive, but I promise you I am not – just sad and anxious, and I think it is OK to be feeling like this right now, it would probably be a bit weird if I didn’t.

You just can’t make this stuff up – facebook again

August 31, 20157 Comments

They say a picture paints a thousand words…so here it is.

For those who cannot see this picture, it is a screen shot of my personal facebook post from this evening. I wrote:

“It has been a difficult week for the both of us, I am pregnant, but the doctors have now given us less than a 1% chance of my pregnancy continuing successfully. We wait to see how things go, but have readied ourselves for the worst. We are being open and honest because so many other struggle with this in silence. The IVF process has been a roller coaster of emotions for us and would like to say thank you for everyone supporting us through it all.”

Above my post is a facebook sponsored advert for stitch fix maternity clothes. Can you believe how mad I was to see this – only 5 minutes after posting it??? Especially after I have already changed my facebook settings to prevent all ads relating to parenting, family, pregnancy, babies etc. Clearly the facebook algorithm reads my post status with “I am pregnant” and over-rides my chosen settings. The fact that I am already a stitch fix customer adds insult to injury!!

I will write to facebook to tell them how upset this made – in spite of the fact that I had changed my settings to prevent this from happening. They really must do better at this.

On the positive side, we have had lots of love and kind messages in response. We thought it was time we gave an update because today when we went to our softball social league where someone congratulated us – then we had to tell them the bad news, and I think they just felt awkward over it. Facebook – the good, the bad and the ugly.

I always say it’s never over ’til the fat lady sings….predicting a successful pregnancy outcome

August 26, 201518 Comments

I always say it’s never over ’til the fat lady sings. But that doesn’t mean I can’t see that fat lady getting ready to get on stage…I can also hear her warming up, running through a few scales too.

So, my suspicions were pretty much confirmed about why I didn’t get my results yesterday. My results were not good. And let me point out here that these are not my words, but the words of my nurse.

My hCG levels last Weds were 49 – just a bit lower about where they should be, but were not overly worrisome…

My results from Tues this week, however, were 126. They went up!!!! But those of you who are familiar with hCG levels and where they should be by now will know this is not a great number. hCG levels should double every 2 to 3 days. What does this mean? Well my doctor wants me to keep taking my progesterone and estrogen, just in case – there is always a small chance this pregnancy is still viable!! But I have to go in for another beta test on Friday to double check that this pregnancy is, in fact, over.

I can safely say I am no longer feeling cautiously optimistic….I am feeling pessimistic as hell and sad. If you would like to hold onto hope for us, I gratefully take your strength and thank you for helping to hold us up, but quite frankly when the nurse tells you it is not good, it’s not good. I understand she is preparing us for the worst.

BUT!!!!! I decided to do a bit of research on what all this really means, what are MY chances? You know I had to do it, as one of my colleagues told me today – GTS! (Google That S#*% !!!). OK, I’m going to get a bit technical here….hang in there if you have in interest in hCG levels (the beautiful pregnancy hormone!!)….

I found a very useful study* that looked at the predictive values of hCG levels for a viable pregnancy 13 days after a 3 day Embryo Transfer (I took my first beta test 14 days after my 3 day Embryo transfer). My result of 49, according to their model, gives me the following chances of outcome: 45% successful singleton pregnancy, 31% miscarriage, 13% bio-chemical pregnancy, 9% ectopic pregnancy, 3% successful multiples pregnancy. Well I am glad they didn’t tell me what my hCG levels were last week!

According to these researchers’ analysis, they decided that the cut-off level for predicting a viable pregnancy was an hCG level is 76 IU/I (80% sensitivity)….although this is considerably higher than some other researchers have reported (for example other studies have found the cut off at a similar sensitivity to be: 42 mIU/ml (Qasim et al., 1996); 55 IU/l (Bjercke et al., 1999); and 50 IU/l (Sugantha et al., 2000)).

Wow guys, 76 seems to be a whole lot higher than the others….so do they have credibility in their research? Well from what I can ‘statistically understand’ and in understanding their research design, it looks solid; their sample size is excellent, some of the best I have seen in articles about artificial reproductive technologies….but I am not a medical professional, so I am totally relying on my knowledge of stats and may be there is something ‘medically awry’ that I cannot see.

If I use any of these models, and consider my hCG level of 49 from last week, these researchers would have told me my chances of a viable pregnancy were always going to be low.

However, there was one interesting point that came out from this study that caught my eye:

In subjects with unexplained infertility, ICSI may result in lower than expected HCG levels (Gold et al., 2000)….The explanation for this was not clear. Although the early embryo cleavage is delayed in ICSI-derived embryos and the fragmentation of embryos is increased the implantation potential is comparable with IVF-derived embryos.

Even though my numbers have not multiplied nicely….in the back of my mind I am holding onto this slither of hope….holding on that we are the ones in that 5% extreme quantile who defy the norm, and it is because we are unexplained and our embryo was ‘ICSI-ed‘ that my hCG numbers are much lower.

Until Friday…………. :-s

*Pokkeus, P., Hiilesmaa, V. & Tiitinen, A. (2002) Serum HCG 12 days after embryo transfer in predicting pregnancy outcome. Human Reproduction 17(7):1901-1905. Available at: http://humrep.oxfordjournals.org/content/17/7/1901.full

No results today….

August 25, 2015August 25, 201512 Comments

Before work this morning I went for my second beta test.

There was a new nurse helping out my favourite nurse.

My results have not materialised today. The chief nurse called me at 1700 to tell me she has not seen them yet and she will make sure someone calls me tomorrow.

Coincidence?

I mean, how often does this happen???

My twisted mind thought of an alternative once it had gone past 4pm and the reason that I had not yet received a phone call, was that my results have come back not good and the doctor wasn’t there to give me the news with a way ahead. Why am I so paranoid about this? Well over the last few days my symptoms have pretty much disappeared. OK so I know it is early still….but…..I took a test again last night because I was just not feeling right about it all…and the line looked much fainter than the other one BUT they are different brands so I probably shouldn’t really compare. However it was pretty faint and I would have thought my line be darker by now?

Grrrrrrrrrrrrrrrrrrrrrrrrrrrr….I bet the new nurse messed it up and I am worrying all for NOTHING.

How to get the most out of your doctor

August 23, 2015August 23, 201512 Comments

It took me about 24hrs after it was confirmed that I am pregnant to realise I do not know how to be pregnant. This might seem very weird considering we have been talking about this moment for more than two years now. Once we started trying to conceive I just of buried my head in the sand. I didn’t want to jinx our chances by buying a book about it, and I started to avoid all pregnancy related websites and apps after 6 months of failing to succeed in our quest to make a baby. I know the basics, like smoking is a big no-no, drugs are dangerous, avoid raw meat and reduce caffeine, but really, that is the limits of my knowledge. So yesterday we went to the book store and bought two books on pregnancy. One was the standard text book “Great expectations: Your all in one resource for pregnancy”, and the second was “Expecting Better”, beautifully demonstrated in this picture by Sushi:

Sushi, my book keeper

This second book interested me because I have always wondered whether Japanese women stop eating sushi, or French women stop eating brie when they are pregnant. Really? I don’t think so. I hope that this book will enlighten me to what the conventional wisdom really means. But when I started reading the first chapter I didn’t need to go much further with it to be completely satisfied with my purchase. Why? Well the author, Emily Oster, is not so different from me, she was not happy with what her doctor was telling her. I realised that my experience with my fertility clinic’s doctors and the feeling I had that there was a poor lack of communication. All of this was because I was not asking the right questions. I didn’t know I needed to ask them. And this is silly because all along I had the key questions in the back of my mind…I use them everyday at work!!!

In my job I help leaders make decisions every day…I do this by presenting the evidence, the facts – for and against a decision – I do some analysis on the data that supports the decision, I try to be unbiased and objective in my analysis, and then I present a recommendation to the leader on the best course of action. The leader doesn’t always go with my recommendation, but I have presented them with the facts and figures to make their own mind up. Sometimes I feel a bit hurt, but then I remember, I am not the one taking the risk. So when it comes to our healthcare and doctors, WE are the decision makers. We need to be presented with the arguments for and against, and be told what the supporting evidence is. WE are unique in many different ways and the decisions we make will be unique, blanket guidelines are not always appropriate for everyone.

I think a good example of this is when we were told we should do ‘ICSI’ because of our unexplained infertility. We didn’t ask the questions: What are the pros of ICSI? What are the cons of ICSI? What are the improved success rates with people like us? (i.e. what’s the supporting evidence/data?) We were not armed to make a decision, we just went with what the doctor said, and in the back of my mind I felt like I had not been given a chance to make a decision. I did actually do a lot of this research myself, but it would have been better if my doctor would have told me – after all I am not the medical professional, I just have the fortunate ability to interpret statistics from studies and experiments. So although I was finally happy with the decision to do ICSI after my research, something inside me was niggling about our doctor’s communication.

Another example is when it came to our embryo transfer. We were told that it is the standard practice at the clinic to transfer 2 embryos on day 3, unless there were over 6 fertilised embryos then maybe we would be a candidate for waiting to Day 5 to transfer 2 blastocysts. We did not ask the questions: what are the pros of us waiting to Day 5? What are the cons of us waiting to Day 5? What are our personal chance of success with 4 fertilised embryos compared to if we had had 6? (i.e. what’s the supporting evidence/data?). Again, I did a lot of this research myself.

I could go on with other opportunities throughout our infertility treatment where I could have asked these three simple questions that would have revealed the knowledge I needed to feel like I was in control of making a decision. We rely on doctors to make the decisions for us…and most of the time I am happy with that fact, but there were times that I felt like we should hold that responsibility for a decision. When it comes to my pregnancy I want to be able to ask these questions to my doctors and nurses so I can take the responsibility for making some of the big decisions such as prenatal testing or birthing plans.

Emily Oster suggests reading the book “Our medical mind: How to decide what is right for you” by Jerome Groopman and Pamela Hartzband. I think I might try it, and I’ll let you know how it goes. Has anyone read this one?

In the meantime my friends, next time you are in a consult with your doctor, remember these three simple questions to help you make the best decision, for you, and get the most out of your doctor….

What are the pros (for me)?
What are the cons (for me)?
What is the evidence/what are the chances (for me in particular)?

IVF DIARY VOL I: 18-20 Aug 2015

August 20, 2015August 20, 201514 Comments

Medication(s) administered and dosage(s). Progesterone 1ml, vivelle dot estrogen patches 0.1mg x2.

Medical procedures undertaken. Beta pregnancy test.

How do I feel today? I have written a separate post about this today as I felt that my feelings should be captured in their own space. To sum that post up…I’m cautiously optimistic.

What are my symptoms? Sharp pains, sore back and I can feel the nausea coming.

How does Chris feel today? He too is cautiously optimistic too and has an occasional outburst of tears welling up. I love how he shares his feelings with me openly and honestly.

Any results? Maybe I should have put this one higher up. Yes – I am pregnant according to my beta test. I don’t know my hCG levels yet, my phone is playing up so I can’t access them at the moment. But I know that the doctor is not concerned about them. Yey 🙂

What’s next? Second Beta test scheduled for Tuesday next week.

Weight. Holding at a reasonable level.

Waist. Getting smaller!! But not for long, hopefully.

Boobs. Getting bigger!!

Hours of Sunshine 🙂 I got some last holiday sun yesterday as it was my mum’s last day in Virginia, so we headed to the beach for some dolphin watching.

This concludes Vol 1 of my IVF diary and this will be my last ‘diary entry’ (Of course I am blogging still – duh!!). It has been a roller coaster of emotions, I have learned a lot. I will share my ‘lessons learned’ of this cycle later this week. But overall, it’s not a bad note to end on 🙂

*Notes. I take First Response Reproductive Health multi vitamin gummies (pre-natal) and CoQ10 200mg gummies daily. NSTR = Nothing Significant To Report.

What is cautiously optimistic?

August 20, 2015August 20, 201549 Comments

What do people mean when they say they are cautiously optimistic? According to the Macmillan dictionary it is defined as:

Hopeful about something, but recognising the problems involved.

I think to describes nicely how I have felt about trying to conceive since we decided to make the leap towards becoming parents.

I also like this image – they say a picture paints a thousand words. Sometimes it has felt like there is a storm out there and our umbrella is going to be whipped away, but most of the time it is just like this picture.

Cautious optimism represented by an image

But for me – this picture paints accurately what cautious optimism looks like for me right now…

Two pink lines

Yes, my dear friends, this is my blue sky approaching! I took a pregnancy test the night before my beta blood test. I was very spontaneous about it. Chris came home from work, he sat down and said “So…injection or test first?”. He threw me off guard because I had been so good at not thinking about using a home pregnancy test, it was just a surprise he said it so nonchalantly. I laughed nervously and exclaimed…”No! Don’t be silly you have to wait!”. And to that, I decided spontaneously to dash upstairs and pee on the one first response home pregnancy test I had left in a drawer. It took seconds for that second pink line to appear, it appeared before I even had a chance to put it down on the work surface. Well that was not what I was expecting! So I left it next to the sharps box for Chris to see when he would start preparing my injection for the evening. I dashed back downstairs (it had only been 2 minutes) Chris had no clue what I had just done. And so we started the ritual of the progesterone injection. We went upstairs with everything needed and I lay down on the bed as if preparing myself for the injection….when Chris shouted out from the bathroom – “hey there is a pregnancy test here??” in a very confused manner. After a second or two of blank face, he almost cried, hugged and kissed me. We talked about how it was not guaranteed and we will find out the next day if this was for real or not. So we decided not to tell my poor mum who was downstairs at the time – oblivious to what was going on!!!

The next morning, my mum and I went to the clinic for my beta blood test. The nurse asked me if I had taken a test yet…I looked at her and smiled…and the nurse said ‘yey!!!’. I was busted – mum had overheard the nurse ask….so I had to tell her what had happened the night before!

And so I waited for the phone call from my doctor. When I saw the number pop up on my phone I took a big breathe. It was actually not my doctor but one of the other doctors who had been doing my ultrasounds. I answered and she said “So….do you feel pregnant?” (What a weird way to start a phone call!!!) I said “maaaaaaybe…..” nervously wondering if this was a cruel joke! And she said “Yes! Yes you are pregnant!!! Your numbers are great…..you need to keep taking the progesterone and estrogen…we probably want to see you again next week for another test….blah blah blah” (-is all I heard after that!) So that was that.

We are pregnant!

Can I put my umbrella away yet? Of course not. Some people may read this and think I am ungrateful or maybe even conceited, but they probably are people who do not understand what infertility can do to the mind. I’m not sure at what point in this process I will take ‘Congratulations’ with a smile. Please understand that I appreciate your kind thoughts and sentiment, I know you are really excited for us….just don’t worry if I don’t respond with an excited smile. Getting a positive pregnancy result after IVF is an awesome step in the right direction, I feel so lucky that we have got this far, but I can’t get excited about having a baby just yet.

I am cautiously optimistic about this exciting step…I’m just hoping it isn’t a false summit.

On being PUPO at P-1 Day (Prove Day)

August 19, 201524 Comments

I officially have the status of being Pregnant Until Proven Otherwise (PUPO). I can ‘enjoy’ this status for about 24hrs longer because tomorrow morning I have my first ever beta pregnancy blood test. What is a beta pregnancy blood test? This is a blood test that will reveal ‘quantitatively’ the amount of hCG (Human Chorionic Gonadatropin) in my blood (hCG is the hormone that is produced when a woman is pregnant).

The last 24 hours have been interesting. Yesterday I thought my period was about to happen. I discovered a bit of dark brown spotting….I freaked out. Then I thought perhaps implantation bleeding? But surely this is way too late for implantation bleeding and unlikely to be possible??! (Remember I have an upside down uterus so perhaps the blood from the implantation has taken a while to ‘gravitationallly’ find its way out! Perhaps it is not impossible?!?!) But then I had horrible aches that felt like a period for several hours afterwards. I felt that it was all over. I went to bed last night pretty much expecting to wake up to my period flowing. I even got upset when Chris told me I should go to bed with a pad and knickers on. I shall not surrender!!!! But no!!! Cruel Aunt Flow teases me!!! Nothing has shown itself since.

Last night I had a weird dream. I basically took three different home pregnancy tests. The first was positive, because I couldn’t believe my eyes, I took a different brand…and it came back positive. So Chris made me take this crazy test. The results were really hard to interpret. The lines looked like inter-twinned ladders and required knowledge of matrix calculus to understand it, and so we argued over whether it was positive or negative. It was positive.

Today, I have been aching like my period is about to arrive, however, I have been experiencing those sharp pains again like in many of my other previous 2 week waits.

The problem with being PUPO is that the progesterone injections and estrogen patches I am being ‘topped up with’ each day to help make a cosy and attractive womb to Huckleberry and Huckleberina are probably causing all of these symptoms. So I am not going to think too much about it all….I remain as I mentioned in my previous post – indifferent.

Lots of people have been sending their love and support over the last few days, and for this we are truly appreciative for the kind thoughts.

So….all that is left to do now is…Prove! I’m excited, nervous and scared all in one breath…or maybe it’s just the drugs!!! Who knows?!?!

Ohhhh just one last thing I will levae you with to make you smile….here is the spectacular bio-luminescent plankton we observed on Sunday. Chris did a great job of the pics! I hope we didn’t use up all our luck this epic weekend of fun!

the bio-luminescent plankton

IVF DIARY VOL I: 15-17 Aug 2015

August 17, 2015August 17, 20158 Comments

Medication(s) administered and dosage(s). Progesterone 1ml, vivelle dot estrogen patches 0.1mg x2.

Medical procedures undertaken. Nothing!!!

How do I feel today? I am 11 days past my 3 day transfer. I am very close to ‘prove’ time…I am feeling sadly indifferent about being ‘PUPO – Pregnant Until Proven Otherwise’.

Time has flown by this weekend – it was quite an epic weekend. First of all it kicked off with a games night with friends – we played Risk – I didn’t win 😦 But it was still fun (Did I mention I hate losing??)!!! Saturday day time we took a trip to the ‘not so Dismal’ Dismal Swamp. The conditions were glorious.

Dismal Swamp – How did it get it’s name???!!!

Saturday evening we went to see Cirque Du Soleil’s Kooza. I AM SO LUCKY!!! You may recall that I originally booked front row tickets for my Mum as a Birthday present for the 6th August – which ended up being the same day as my 3 Day Embryo Transfer. Because I was on doctors orders for 24 hour bed rest I was unable to go 😦 But then an amazing act of mother nature cancelled this show because of a lightening storm. Thank you mother nature!!! So we re-booked our tickets for this Saturday….and it was AMAZING!!!! Any other circus will never be the same again….these people are just so talented – the story, choreography and music FABULOUS!

Chris doesn’t like ‘Selfies’ (It’s not a selfie, but a groupie!!!)

But the amazing weekend didn’t end there! Sunday we headed to Back Bay Wildlife Refuge and False Cape State Park for a bike ride where we saw mother nature in her awesomeness again. Afterwards we had a dinner sunset picnic on the beach, followed by a hunt for bioluminescent Plankton. The plankton was lighting up the dark skies of Sandbridge beach’s ocean water in an amazing luminous green colour. As you walked on the wet sand the ground lit up with luminous green beneath you (A bit like in Avatar!!) I wish I could show you some pictures, but there would be no justice in the photo, you just had to see it with your own eyes to appreciate what an amazing phenomena this is!

I also completed my 4 week online course on Data Visualisation…it kept me a little distracted, but honestly it was a mistake to sign up for it with everything going on over the last 4 weeks. If it had started 3 weeks later it would have been good to keep me distracted in the 2 week wait rather than working when I was struggling to recover from the egg retrieval!!

We bumped into a friend at the supermarket on Sunday who has previously sent us a private message of encouragement after our facebook announcement of our Embryo Transfer. I nearly burst into tears as she gave me a big hug and wished me lots of sticky vibes. So lovely.

As you can see I spent a lot of time having fun this weekend, but I was not distracted from the fact that I was sad at times for absolutely no reason at all, I cried over the smallest things, and I argued with Chris over the smallest things. DAMN DRUGS messing with my emotions!!!

What are my symptoms? The sharp pains have subsided over the last few days, which makes me think waaay too much that this IVF hasn’t worked. Apart from the growing boobs and the emotional schizophrenic Dani, I have no other symptoms.

How does Chris feel today? Chris has put up with a lot of my random outbursts of tears and overly aggressive and defensive approach to every day occurrences. He has been worried about me, of course. He is very hopeful and talks to huck and huck, telling them to bury deep and grow strong. He helps keep me mostly sane about all this.

Any results? No.

What’s next? Test time! I will do a home pregnancy test at some point before my blood test on Wednesday. I know they are not wholly reliable after IVF but I want to have some kind of expectation before hearing the results over the phone.

Weight. NSTR

Waist. Still not quite back to my normal waist size 😐

Boobs. NSTR.

Hours of Sunshine 🙂 The sun has just not stopped shining this weekend…if sunlight is as important as they say they are for egg development then my eggs are getting BAKED!!!

*Notes. I take First Response Reproductive Health multi vitamin gummies (pre-natal) and CoQ10 200mg gummies daily. NSTR = Nothing Significant To Report.

In sickness and in health

August 14, 20151 Comment

The day before my egg retrieval we decided to culture ourselves by going to the Chrysler Museum of Art…it is a fabulous free art museum. We have been twice now and still haven’t been round the whole museum. My favourite part is the glass art. I studied art and sculpture at school up to A-Level so I like to think I have a reasonable appreciation for art forms. It was a mini exhibition in the glass section that intrigued me the most – entitled: In Sickness and In Health. Sounds like something from a set of wedding vows, right??! Hmmmm. Here is a peek at the artist’s main exhibit:

Beveryly Fishman: In Sickness and In Health at the Chrysler Museum

I was enamoured by it. Why? Because it represents the world of modern medicine very well. I didn’t take photos of the side exhibits, but they were intriguing too. It is meant to be a ‘playful yet provocative commentary on the world of modern medicine’. As I looked closer at the glass pills I began to understand what she was trying to represent…the bright colours and bold patterns of the pills are supposed to alert us to the complicated relationship between a $500 BILLION pharmaceutical industry and our yearning for good health. The exaggerated sizes of the pills aim to point towards the excess of the industry with aggressive marketing tactics to promote various medications to the sick AND healthy. I realised as I stood there with my big fat bubbling ovaries weighing me down from all the recent injections that looking into the reflection of these giant glass pills, this was part of ME.

$7700 our IVF medication cost for just one round of treatment. (I know we can buy it a whole lot cheaper…I compared it to the cost in the UK). The artist says that when you look in the reflections of certain glass pills you will see a distorted mirroring ‘evoking the complex connections between chemical substances and our own self-awareness’. I want my own biological child THIS much…I am willing to inject and consume $7700 worth of medication despite the fact that I am not actually SICK. But then again, I have a disease, it’s called infertility, I guess that makes me sick officially, I just don’t feel SICK. But the doctors don’t know what is making me SICK and so we are trying everything possible to overcome it. Do I have a distorted view of our situation?

I put a lot of trust in the doctors and the medication we are using…I mean have you seen the whole list of disclaimers on those medicines???!!! Here in the US there are lots of adverts for drugs on TV and radio, and they have to legally state what possible side effects are, and sometimes these disclaimers go on for 2 whole minutes usually ending up with – may cause every disease under the sun – oh and don’t forget death. We just don’t have this form of advertising in the UK, so it is odd and I always wonder why anyone would ever take the drugs that are being advertised if there is a chance of death. Some of the drugs I am using are known to increase the risk of various cancers, including ovarian and breast cancer. I am willing to accept those (admittedly teeny tiny) risks to have my own child. But to what extent will I keep doing this – pumping chemicals and hormones into my body? How much is too much? When do we stop? When is enough, enough?

The museum critique concludes with a poignant question about the exhibition: