Tiny Bump tears

I’d forgotten about the Ed Sheeran song ‘Tiny Bump’ until this morning.  Today I put on the Ed Sheeran album + I bought back in 2012.  It’s been a while since I listened to it and I had forgotten this beautiful song he wrote about his friend who lost her baby at 5 months pregnant.  I just bawled my eyes out.  Actually it also reminded me that I put the entire album on my birthing playlist.  And yes, I think I told Chris to skip it when it came on.  Not the best song to listen to when you are in labour!  If you haven’t heard it, it’s on you tube, linked below.  Just wait to those last two lines of the song and have a box of tissues to hand.

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Postpartum recovery and pregnancy loss trigger

My postpartum recovery hasn’t been too bad at all. For the first 5 or 7 days I lived in the big stretchy pants with the huge pads that the hospital give you to take home. The amount of blood loss was heavier than my heaviest of periods, but the type of blood was different to a normal period, it was more of a pink and mucousy looking colour. Today, 13 days later and I’m still bleeding (as expected) but the amount of blood is more like a normal period for me. The blood colour goes between normal period type blood and a light pinky color. I’m now in normal pads and normal underwear (my normal period underwear anyway!).

I had a second degree tear inside my vagina that was stitched up, so I haven’t felt too much discomfort from the stitches.  However those damn hemorrhoids I was suffering from before giving birth almost tripled in size and a new one appeared too.  I’ve been using the prescription cream they gave me at the hospital and it has done buggar all.  Well if that is really the worst that I came away with, I am doing well.

So things down there really aren’t that bad.

But psychologically things are a bit different.

The first few days I experienced contractions every time I breastfed. These contractions were not like Braxton hicks or labour contractions. I’ve experienced these type of contractions before – when I miscarried. So every time I felt these contractions my mind wondered briefly about huckleberry (from our first IVF cycle). But I’d look down at Aviana nursing and I’d smile.  It’s funny how life turns out. It’s bitter sweet.

Christmas Day I had perhaps done too much walking around, later in the evening I bent over to pick up something, I stood up and suddenly felt like something squishy the size of a tennis ball appeared in my knickers. I grabbed my crotch confused and dashed to the toilet. There in my knickers was what looked like a huge ball of abloody clot. I freaked a bit, then prodded it expecting it to be soft like a clot, but it was actually a ball of tissue.  I shouted at Chris to take a look (yup, short of pooing in front of each other, nothing is sacred when it comes to all sorts of bodily fluids!).  My mind instantly felt and remembered my miscarriage and passing big clots.  I burst into tears and said to Chris ‘could this be….???’.  Chris knew what I was thinking, and he said no…it couldn’t be, they would have seen it on the ultrasound earlier.  He was right, if it was Aviana’s twin they would have seen it sooner.  But then I thought – they never saw Huckleberry on the ultrasound did they?….

The nurse had said if I experienced clots bigger than the size of a quarter I should phone in.  But then the guidance my OB had sent me home with was if I experienced a clot bigger than an orange.  Whatever this clot like thing was, it was about the size of a small mandarin.  I didn’t have any other symptoms and did not pass any other clots, so I decided not to phone the doctor.  I didn’t want the emotional stress for nothing that is just considered normal postpartum recovery.

I never expected to think about our loss so soon after giving birth 😦

Not forgetting Huckleberry

Speaking of not forgetting….this week my app ‘Glow’ I use(d) to track my periods told me that my period was due in 2 days!  Well that was a strange thing to say because I had marked “I am pregnant” on the app.  So I decided to open it up and see what was going on.  Glow was telling me I am pregnant still, so  I am not sure why it was telling me my period as due.  Anyway, it came up with a big advert saying download our ‘Nurture’ app, a follow on app to glow for pregnant women.  So I thought, well why not give it a go.  I had already used it once before when I was pregnant after IVF cycle 1 and so downloaded it off my cloud.  Once it installed I opened it up and this is what I was faced with…

huck

 

Are you kidding me???? Oh it was a stab in the gut. Yesterday I was 44 days overdue and Huckleberry was the size of a slightly bigger pumpkin at 46 weeks old!

I haven’t forgotten you Huckleberry. I promise you I never have.  But this was just too much.  I deleted the app straight away as I couldn’t deal with trying to figure out how to reset it.

Miscarriage & the shameful tabloids

I love a quick flick through the trashy magazines whilst I queue up at the supermarket*, and this week I was saddened by the headline of the Star magazine:

“Gwen’s Baby Heartbreak Emergency Visit To Hospital”

“This was our last chance to start a family”

“Gwen terrified Blake will leave her”

Star magazine.jpg

So I picked it up and actually bought the magazine.  I thought it would be about a personal account of Gwen’s struggle with miscarriage.  Maybe a celeb was being open about how terrible miscarriage is and spreading awareness.  So I made an impromptu purchase.

They had me.

A few moments later a couple queued up behind me and the lady  also caught sight of this headline; she was quietly speaking to her husband about how sad that is…and then….she started crying.  Her husband consoled her and asked- why are you crying?  I couldn’t quite hear her response through the tears, but it made me feel like crying for her, for me and for poor Gwen Stefani.

Later that day when I got home and started to read the article about Gwen Stefani and Blake Shelton’s relationship and their ‘heartbreak’ (I had no clue they were even dating! That’s what happens you get rid of your cable TV to save money! All my celeb gossip knowledge gone!).  The magazine article explained how the couple have been “trying to conceive for four months” (BTW – they have only been dating for four months!) and now they may have to “abandon their hopes for a child together”.  Anybody having to abandon hopes of conceiving their own child is a very sad situation, even if it was only for four months they tried (Gwen is 47 and has 3 boys her youngest is 3 years old).  The Star’s secret source apparently told the magazine that “[Gwen] doesn’t want to talk about it, but her friends are afraid she might have had a miscarriage or was told that she can’t have any more kids.”

What the *%!% ??? …..so basically Star magazine, you created a headline out of some random source who said Gwen *might* have had a miscarriage.  MIGHT have had a miscarriage.  Or she was told she can’t have kids.  Oh and “she doesn’t want to talk about it” – yeh she wouldn’t want to talk about it to YOU, the ‘secret Star magazine source’.  Because you are already doing a shitty thing and speculating to a magazine about poor Gwen’s personal family life.

This source then claims that “Gwen and Blake are so in love and have been trying like crazy to conceive a baby.  They thought it happened – she told him she had all the signs of being pregnant. They were absolutely ecstatic and couldn’t wait for the doctor to confirm the happy news.”  And here comes the clincher of the story “Gwen must be devastated.  I think she’s scared Blake will leave her if she can’t have his baby.”

Am I living in cuckoo land or is this story just outrageous??!! I can only imagine that if Gwen has seen this headline she would be devastated that this magazine published this story about her miscarrying in this manner – whether there was any tiny bit of truth behind it or not.

It turns out (unsurprisingly) this article was simply untrue.  This has to be the worst kind of low down tabloid story I’ve read in a long time, clutching at straws and making something up like that is just so wrong in many many ways.  Gwen & Blake I wish you could sue these big arses for this terrible story.  But I know you probably won’t because you would have to drag your private life about your personal family building through the courts.  And you have only been together for 4 months.  No one wants that at this stage of their relationship, especially as they have been through their own messy personal divorces not long ago. I am so sorry to you Gwen, and Blake.  I am sorry I bought that magazine, I didn’t know.

It’s just shameful Star magazine.  I am boycotting all your publications and your sister ones like OK! too.  I admit I love a bit of celeb gossip, but this isn’t gossip, it’s just heartbreaking 😦

*US translation – I love a quick flick through the trashy magazines whilst I am in line at the grocery store.

The tears

I woke up like any other morning, rolled over and checked my phone to see what the time was.  I can’t help but check my notifications on my phone in case something exciting has happened whilst I’ve been sleeping (a pretty bad habit of mine)…if there is a facebook notification then I open up facebook.  This morning, bleary eyed I opened up facebook and there was a stream of lovely photos of my friends in the UK celebrating mothers’ day (it’s not mothers day here in the US)…it warmed my heart. I like mothers’ day, I’ve never found mother’s day difficult whilst trying to conceive.  Yes it kind of sucks that I’m not a mum yet, but I feel more association with the day to my mother and celebrating her. But……

This morning as I woke up, for some reason when I read a post about someone who was pregnant and celebrating being a mother, it triggered me.  I thought about how far along I would be if huckleberry had decided to implant a few inches lower in my uterus rather than where ever else he was hiding probably in my fallopian tube (we never found out exactly).  I would be 32 weeks pregnant with a nice bump.  I would be waking up, probably complaining about some pregnancy ailment.  I would be asking huckleberry how he felt like behaving today.  We would probably have the nursery almost ready…..maybe I would have bought that adorable onesie I saw last week in TJ Maxx…maybe, just maybe, I would consider my self eligible for mothers’ day today.  And so this morning, I quietly had a bit of a cry thinking about these things of what might have been.

I’m not to dwell on the ‘what ifs’…but yet it reminded me that there are many, many women out there who have mother hearts.  We might not be able to see them, but they are loved by many. So to you all…happy mothers’ day X

mother's day.jpg

 

 

 

 

 

At least you know you can get pregnant

I think I’m quite a tough lady when it comes to receiving mis-informed and unintentionally hurtful infertility advice from the more fertile.  I experience it frequently because I am open about our infertility journey.  I forgive them because I know they don’t understand infertility as a disease and they only mean the best for me.  And I also know they couldn’t possibly truly understand how I feel because it has never happened to them.  Similarly like to people who have suffered from other diseases such as anorexia or depression or cancer, I don’t know what it is like or how it feels…I would never offer my uninformed opinion about treatment options or ways to overcome the symptoms of these diseases.  I won’t offer consolation that attempts to make them feel better about their disease.  Rather, I will offer my ear and my hand.

So why is infertility any different to any of these other diseases in how we talk to other people about them?  Why do so many bloggers end up writing about this struggle?  Is lack of education really the cause of this? May be other disease sufferers experience similar unhelpful comments too.  I really don’t know.

Have you seen that film about depression where friends and family offer their advice about depression, but the recipient of the advice is portrayed as a cancer sufferer?  The point of the video is that you wouldn’t say these things to someone who has cancer, so why would you say these things to people who have depression?  I think it is a great educational video (it’s at the end of this blog post if you want to see it).  Ultimately, I think there needs to be a film in a similar light about infertility.  I know there has been outrage on some forums of comparing infertility to cancer.  I understand that it is outrageous because people generally won’t die from infertility.  Comparing depression to cancer may also outrage many people as well…but depression can lead to suicide, it can kill too, but it is not a well understood.  So what is my point?  My point is that there are helpful things you can say to someone with infertility, and then there are unhelpful, even hurtful, things you can say to someone with infertility.

I have written about things that hurt, what to say, what not to say to someone with infertility many times before (ignorance is bliss, a voice of the child free family, Grow some thicker skin, you are so lucky you don’t have kids, Understanding: #YouAreNotAlone, Reblog from Que Milagro: Pardon Me While I burst into flames).  Today’s post adds to this list.  Today I am writing about one particular comment I have received multiple times since our loss from IVF cycle 1 from both fertile and infertile people:

“At least you know you can get pregnant”

I’m just going to put it out there straight away.  There is nothing consoling about this.

I get that there are many women who have never seen those two pink lines, me being one of them until our fist IVF cycle.  So I understand how hard it is to get negative after negative 25 times in a row.  But being pregnant  and losing a pregnancy is not consoling, knowing that I ‘did get pregnant’. I didn’t stay pregnant.  Maybe they would say “But it’s one step in the right direction”, yes perhaps, but it was then like ten steps back after our loss.

Would you say this to someone after they lost their baby during childbirth?  No.  Would you say this to someone who lost their baby in their third trimester? I doubt it.  Would you say this to someone who has suffered from recurrent pregnancy loss and miscarried 6 times? Definitely not. Would you say it to someone with secondary infertility? For goodness sake, NO.  So why does this need to ever be said at all?  It makes absolutely no sense at all and simply reminds me that we simply FAILED.

I am due to have my first beta test on Friday and in some ways, I am afraid of a positive than a negative.  Don’t get me wrong, I WANT A POSITIVE MORE THAN ANYTHING.  But I am afraid of when the positive comes, I know that even if this is my one successful pregnancy, my journey through the first trimester is going to be a psychological challenge.  If we ended up in a similar position to last time with a slow rising beta levels, pregnancy of unknown location suspected ectopic, yes it will be easier knowing the process the second time around, but it will be bloody damn hard to go through it all again.  And that is why I cannot accept the statement  “At least you know you can get pregnant” as consoling.

exhausted

3 months post Methotrexate

Today marks the day that 3 months ago I took the methotrexate shot to terminate my suspected ectopic pregnancy.  Today is an important day for Chris and I because we are officially allowed to try to conceive again!  Woohoo!!!  We were on a ban from conceiving just in case I got pregnant and the methotrexate was still in my system causing damage to the embryo.

Three months has flown by…I have kept myself busy with work travels and finishing off various projects at work before the end of the year.  Also preparing for Christmas has been a nice distraction too.  Now all that is left to do is make some time for a few parties to see in the new year.

You cannot believe how much I am looking forward to 2016 and our next round of IVF treatment 🙂 yup….this craazy lady here is looking forward to being stabbed in the tummy with needles.

butterfly.jpg

November: My blog therapy month #NaBloPoMo15

I challenged myself to write a post every day in November as part of National Blog Posting Month 2015.  Well, I certainly wrote more posts than I thought I would, but I didn’t quite manage to post every day.  I managed  22 posts out of a possible 30 :-s  If you posted every day, kudos to you my friend!!! It isn’t easy.  The thanksgiving holiday and travelling to Europe for work has limited my success in posting every day/  The days I didn’t blog were the days I yearned to write; just had little physical time to sit down and write it.  I got withdrawal symptoms when I didn’t write.  And I still have a long list of things I want to write about.  Fortunately, I never experienced writers block, I always had something to talk about.  Which is surprising, because I am not much of a big talker in real life!

I have written about some things that perhaps have given you more insight to my ways of thinking – an insight to the inner Dani!   If you are still here reading – Thank you for sticking with me!!!!

I have written about infertility related issues, and explored some broader topics about becoming a parent.  I have written about things that have bothered me and simply writing about them has helped me get over them.

I have also killed some time; time until our next cycle of IVF cycle.  I now have a new countdown – Christmas!!!! And I even have an amazing 3D Christmas Tree advent calendar that my granny gave me which will help.  I bought Chris a Birthday present – a daily lesson of couple’s massage for a month.  Basically he gets to be the stooge whilst I learn how to massage properly. It’s the gift that keeps on giving!!!! Not only does Chris get a mini massage on a daily basis (assuming I don’t hurt him whilst learning the massage techniques!), it brings us closer together through the power of relaxation – AND this daily lesson will be another count down to Christmas!  Then, after Christmas it is only 3 days until my Birthday, which will also most likely be the start of my IVF Diary Vol. 2.  Whoop whoop!

Time has flown this month, NaBloPoMo15 has signified a lot more to me than just exploring my ability to write and blog.  I have discovered that writing is therapeutic, something very much needed.  It has helped in my recovery to positivity.  I am feeling ready to start afresh.  January 2016 is going to be a rollercoaster ride.  But I have a feeling that we are going to have a great start to the year.
NaBloPoMo November 2015

What-ifs? And Bias in Diagnosing Ectopic Pregnancy

Yesterday Chris and I were talking about the ‘What-ifs’ of the future.  We tend to find ourselves having these kind of conversations regularly.  It’s difficult to plan anything when dealing with infertility.  Not only because of things we can’t do ‘when we are pregnant…’ but, also what to do with our savings.  We want to buy a house together, but it’s difficult to have these conversations with little knowledge of where our infertility journey is going to take us.  For example, if we bought a house now, we might not be able to keep our options open to afford egg donation, surrogacy or adoption.  So we hold off on making these big decisions for now.

We talked about what we would do if I am pregnant again and we face a similar scenario that we faced after our first round of IVF – slow rising hCG, nothing seen on the ultrasound (Pregnancy of Unknown Location), suspected ectopic pregnancy.  Chris said that at least we would know what to expect!  This is very true.  But, I think I might do things differently.  There is a small part of me that feels guilty for giving in and taking the methotrexate treatment.  Part of me wonders – what if?  What if I hadn’t taken the treatment.  Would I have just prolonged the inevitable?  Or would I be into my second trimester by now? I actually feel sick writing those words!

We made the decision to take the methotrexate treatment after 5 doctors from our clinic had suggested we should do that.  Our doctor had spent 20 minutes meticulously looking for an ectopic pregnancy on the ultrasound, said she couldn’t see anything that looked like an ectopic, and concluded that I must have miscarried already (I had started bleeding two days before) and then effectively released me from monitoring.  The next day she phoned to say she changed her mind.  What made her change her mind?  Did something not fall into place?  Did another doctor tell her she was leaving herself exposed to liability for misdiagnosis?  Did the other 4 doctors tell her she had made the wrong call?  How did she make her decision?  Did she review the evidence afterwards in a more objective manner?

It got me thinking – FIVE doctors told me I should take the methotrexate to terminate the {ectopic} pregnancy.  That should be enough to qualify for my ‘second opinion’.  But I never really thought about it until now, that organisational bias may have come into effect here.  All these 5 doctors work together every day.  They all make decisions on their own every day, but sometimes they ask each other’s opinion when making a decision or a diagnosis.  Not only do doctors face their own personal biases but they face bias that becomes systemic in their clinical practices.

I am not a stranger to these biases – I teach methods and techniques to the military to help them overcome all kinds of biases when they make decisions.

There are many opportunities for a doctor to become biased in their own decision making or diagnosis, here are some of them:

Confirmation bias:  The tendency to over emphasise data that supports an existing hypothesis rather than data that refutes that hypothesis.

Overconfidence Bias: Over-reliance on the opinions of the expert that can before (the attending or consult etc)

Availability Heuristic: this patient has whatever your last patient who looked like this has or whatever is commonly discussed

Premature closure/anchoring: the tendency to decide that the patient’s current problem is related to the first thing we diagnose rather than more than one issue.

Commission Bias: the tendency to need to do something rather than stand there.

Hassle Bias: the tendency to take course of action that is easiest or exposes the physician to the least amount of grief

Regret Bias: the tendency to take course of action due to guilt from a missed diagnosis

Commission Bias: the tendency toward action rather than inaction.  An error arises when there is an appropriate committal to a particular course of action.  It is more likely to occur in someone who is over-confidence, and reflects an urge to ‘do something’.  It satisfies the obligation of beneficience in that harm can only be prevented by actively intervening.  Commission bias may be augmented by team pressures or by the patient.

One or more of these biases may have played a part in my doctor’s decision making process for my diagnosis*.

In addition to the individual and organizational biases doctors face, there are also the established guidelines that doctors follow.  Every clinic will develop its own guidelines for diagnosis and treatment of ectopic pregnancy, generally based off national best practice and research – my clinic is within a medical school so I like to think they are up to date on their practices.  Guidelines will vary from clinic to clinic because they have the freedom to do so.  However, in the UK, the NHS is very transparent about many of these national guidelines by publishing them on the internet, and so I know that if I was in the UK I probably would have been treated very differently to how I was treated by my clinic.  In the UK I would have been sent home and told to keep taking home pregnancy tests until the date for next ultrasound scan or until I received a negative pregnancy test or if my situation changed to go to the hospital if I had developed any signs or symptoms of ectopic pregnancy.

I can’t help but wonder “what if”….I know the chances were slim that my pregnancy was going to be successful – the statistics told me that.  But I have read about a very small number of cases of women having slow rising hCG level after IVF, with nothing seen on the ultrasound up to 9 weeks and delivering to full term healthy babies.  There is a facebook group called “Misdiagnosed Ectopic Pregnancy Given Methotrexate”, and I have learned that research in this area is lacking, particularly for women going through IVF and women with retroverted/tipped uteruses.

I don’t regret my decision to listen to the advice of 5 doctors to take the methotrexate.  But it does make me think about how difficult a doctor’s job is to make that decision, the biases they face on a daily basis when making those diagnosis decisions, and the overall lack of research in this area.  I hope I never have to face this scenario ever again.

If you have found my blog because you are facing this situation, please feel free to contact me: dani@thegreatpuddingclubhunt.com because I wouldn’t wish this upon my worst enemy and will try to offer you a hand through it.

 

*If you would like to know more about bias in clinical decision making there is an excellent website that provides more information: http://www.improvediagnosis.org/?ClinicalReasoning

The cost of a suspected ectopic pregnancy

You can’t put a price or a value on having both your fallopian tubes intact.  In fact I imagine that anyone who has lost one or two of their fallopian tubes wouldn’t be able to put a price on how much they are willing to pay to have them whole and functioning again.  Without a doubt.  And so when the doctor told me that there is a risk that I had an ectopic pregnancy and a fallopian tube could rupture at any point, you simply don’t think about the $$$ money.;

After I found out that my pregnancy was non-viable, the whole process of determining whether or not I had an ectopic pregnancy was absolutely soul destroying and mentally exhausting.  I tried to research what the likelihood was of having an ectopic pregnancy was with IVF.  I tracked my hCG levels to try and determine what my odds were.  I even joined several online groups to talk to other women who had experienced what I was going through.  (I have probably mentioned this before, I dislike online forums because you get exposed to some real stupid, dumb, insensitive and simply irritating people.  And you just can’t get rid of them.)  All of this led me to some tiny hope that I was going to be one of those women who was going to beat the odds and carry a pregnancy despite the slow doubling hCG levels.

The doctors cared a lot about my wellbeing and were concerned of an ectopic.  I mostly followed their recommendations:  We both dropped everything to come in to the clinic for blood tests, consults and ultrasounds.  What they didn’t tell us was how much it is all going to cost.  Like I said, when there is a risk of losing a body part or even worse, your life, the money doesn’t matter.  And now I can finally say how much it all cost.

I am not complaining about the cost because we are lucky, we have amazing insurance and we can afford to pay the bills.  What I would like to know is what about those people whose insurance wouldn’t cover the costs?  It’s just another slap in the face if you have saved up or taken on debt to pay for IVF.  Of course, most insurance companies cover the cost for maternity healthcare, but the treatment of an ectopic or any other type of pregnancy loss doesn’t come for free.  Remember I told you about the woman who couldn’t afford to have an ‘abortion’ to end her life threatening pregnancy at her hospital because of a CRAPPY law? (You can read about it here).

When you save up and take on debt for IVF, no one tells you to save a little bit extra in case things go slightly wrong.  I have discovered, however, that most hospitals and healthcare providers will negotiate the costs if you can’t afford this type of care.  There are also some charities out there that can help.  I also believe that friends and family will be there too to help out.  We have helped out some friends in the past when they got caught out with unexpected medical bills.  It’s not only a difficult emotionally, it can quite quickly become difficult financially.

So how much did it cost?  Luckily for us, not much.  The total cost was $3,107 of which our insurance covered most of it, and so cost us $140.   I have updated my ‘Cost Lowdown’ page with the breakdown of where the biggest costs lie here. But this has made me think about putting aside more savings specifically for unexpected healthcare costs.

My appreciation for the UK National Health Service has simply sky rocketed.