Grateful

I realised recently that I spend a lot of my time feeling generally peeved with life.  I am at times very dissatisfied with what life has dumped at our doorstep, the path our world has meandered this past year, and the pain it has brought us.  And it got me to thinking; how does one become so bitter?  How do you move on from the anger that boils in your blood?  How do you get back to loving the life that once fulfilled you?

I realised I find very little joy in my world.  I try, I really do.  There are things that make me happier, many things.  But I'm always filled with this insatiable thirst for joy to come back into my life, even though it's me and my selfish pain that's preventing it.

"No more," I said to myself this morning.  "Today I make the effort to be better."

Obviously I didn't say this out loud, G puts up with enough crazy from me.  But I'm trying to flip the switch back to being grateful.  Replace grief with acceptance.  Anger with hope.  Yearning for more with need for the simple things.

It may seem odd to you that someone who knows the pain of such loss can be ungrateful for what they have.  But I am consumed with what I lost.  The daughter I wanted so badly, and felt I had suffered so much to deserve.  I feel robbed of what I worked for.  After being determined to not be filled with hate and anger, for Poppy to not always equal pain, I feel exactly that.  I turned her short existence into a shroud of 'It's not fair!'.  And it's not, really.  No death is ever fair.  Someone must always suffer the pain of being left behind.

But today I decided to make her mean more.  Make me see the joy in my life again, the goodness that is there.  I would be grateful for what I have.

So I started by laying watching G sleep, marvelling in the fact that for some strange reason this man chose me.  Chose to be in my life.  I am grateful for this man.

Next, Xav came bundling in at 6.51am, and I am grateful he is well enough to bundle out of bed so early and be excited about the day.  And when he whispered, "Mummy, thanks for giving me my dragon toy yesterday, I love you,"  and I'm grateful that he is so kind and tries so hard to be good.  I am grateful I was given the job of being his mother. I am grateful for my son.

I made some breakfast, and after my cereal was finished, I was grateful at the fact that the milk was still cold and I was able to have as much as I liked.  I am grateful we always have enough to eat.

I thought about seeing my friends last night, and how wonderful it is to have friends who don't treat me weird, despite my weirdness.  I am grateful for them.

I got the cupcakes ready for work for tomorrow, and I am grateful that I work in a place where I feel comfortable, and there are people who are great friends and they supportive of me.

I thought about catching up with my family later today, and how great it is that I see my family so much, and we love each other, support each other and always (despite all those little arguments) end up respecting our values and differences. I am grateful I married into much an great family.   I am supremely grateful for my family.

I am grateful for the beauty of the sun light streaming through the curtains, and the leaves on Poppy's tree.

I am grateful for the fact we are strong enough to bear what we have been through.  I am grateful to understand to medical jargon that was thrown at us, and have people who could and would answer our questions.

It turns out I am grateful for many things.  I have love in my life, all around me.  I guess it's not that I am ungrateful, I am just broken.  The love could not stay in a heart so broken, but not because it isn't there, just because the whole contraption isn't working properly right now.  But once I fix it, once it's mended, I think the capacity for love will be more; endless.

I guess a heart needs to stretch in all directions, bear both tremendous heartache and immense joy, to help it become big enough to hold the love that can now fill our life.  Poppy has brought us both: in her creation and death. 

I am grateful for Poppy.  I am grateful.

Filling the void

You know that big hole in my chest I sometimes talk about?  I realised that I don't feel it so keenly anymore.  It's still there, still a big part of me, but I've begun to find ways to...fill it?  Live around it?  I'm not sure how to describe the feeling of knowing it's there but not acknowledging it all the time.  I guess I can control the feeling better than I could a while ago.

I've filled it with many things.  My beautiful Xav, and making memories with him, learning more about what he's thinking and feeling.  Work fills time, and it takes energy.  Trying to make time to spend with G.  Birthdays.  Anniversaries.  My family.  Cake decorating.

But really what I yearn for is another baby.  Not to replace Poppy, but to fulfil this need I have to have more living children than angel ones.  But that is a long process, and may take some time to achieve.  How do I manage in the mean time?  This has plagued me for awhile, ever since I decided that I wasn't quite ready to embark on the trying to conceive journey just yet.  I desperately want another baby, but I'm not ready for the rest of it yet.  The months of attempts, which should be fun, take all the intimacy out of it.  Timing things to fit in with cycles, injections, what I ate today, what G washed his jocks in, phases of the moon, and possibly applying some sort of herbal mix in my bellybutton and under G's left armpit, take all the spontaneity out of things.  Since I can't even seem to remember what I'm doing between standing up from my chair and taking the next step, I figured I wasn't quite ready for the schedule of trying again.  Not to mention the stressful pregnancy, and the barrage of testing I will need once I am finally up the duff.  Anyway, I digress.  How was I to cope with needing the baby but not yet ready?

Hamish.  My sweet little nephew Hamish, who should be growing up with my Poppy, has been an endless source of joy for me.  My amazing sister who lets me completely over mother him, and live outrageously vicariously through him.  He's an absolute sweetheart and despite enormous difficulties in his own little life, he is a ray of sunshine for all of us.  So I guess through Hamish I get a lot of the baby stuff.  I change nappies.  I shower him in cuddles and kisses.  I watched dotingly as he cut his first teeth, tried his first foods, crawled for the first time.  I even looked after him for a whole weekend, and Xav and G and I got to pretend for a little while.  It was nice, and it strengthened my resolve that maybe the time had come to really start to move forward. 

So with a weekend with a baby under our belts, and not major accidents, illnesses or injuries, we thought it was time to give it a go full time.  So I did two things.  I started back on fertility meds, and...we bought a puppy.  Ostensibly, the puppy was for Xav's 6th birthday.  But he is also a piece of puzzle filling the void we feel in Poppy's absence from our lives.  We picked what sort of dog we wanted, I found a breeder who had a litter ready to go, and off we went.

We picked up our new fur baby on a Sunday.  Ironically, I was violently ill the whole way to get him. Pseudo morning sickness maybe?  I was nervous.  I had the 'puppy bag' packed, the paper work ready, I'd set up a space at home for him.  I read every bit of info I could find about helping him settle in. 

We met the lovely breeder in a Macca's car park in Albury.  Not quite the glamour befitting our newest addition, but what can you do?  We presented him to Xav, who reacted with the surprise and excitement we had hoped for, and after some consideration decided to name him Thor.

My first cuddles with Thor involved me rocking him.  Upon realisation that I looked absolutely ridiculous, I reminded myself he was not an actual human baby and rocking was probably not necessary, he snuggled up under my chin and promptly fell asleep.  I have to say, at that point, I was hooked.  This cute little puppy became another fluffy little piece in helping us heal.

Within two days we were all madly in love with Thor, despite the fact we have to get up through the night, clean up messes, shop for puppy things, live without a phone as he's chewed through the cord... We've started some basic training and Xav and I hate leaving him at home when we go out.  Thor cries and snuggles and plays.  All the things we'd probably be doing with Poppy about now. Our little fur baby.

It's nice have a new member of the family.  But more than that, it's nice having something to be happy and excited about.  Nice to share a picture of our new 'baby' and not feel pain.  I am glad he's in our lives.  If we have to have this void, I'm so glad he's here to help us fill it.

Welcome to our family, Thor.  I can't promise a smooth ride, but I can promise endless love and support.  We hope you like it here. 

So, Thor makes 5.  Hopefully we'll make 6, someday soon.

Xav and Thor <3

My New Normal

Baby loss has become a big part of my world. I guess when you've lived through something so horrific, it is our nature to seek out others who understand. Parents with boys seek out other parents with boys, mums of multiples seek out others with multiples. And those of us who have known the pain of our child dying seek out others who know the same pain.

But there are days when I realise I am not desensitised to it. Every now and again I read another mums story which mirrors my own so much, my heart breaks all over again. On Friday I opened a link to one such story. Another mum who was expecting to introduce her baby to his sibling only to have to break the news that he had gone to heaven and wasn't coming home.

This mum is has chosen to write her experience down right from word go. She has scribed her journey for all to read. And I admire her for doing so. It's not always easy to jot down your inner most fears and feelings for others to see. There are times I write things I am not proud of feeling. There are times I know what I write might be misconstrued. I try to tell myself I don't care what others think. But truthfully, I do care. I don't write to offend or to cunningly indicate the things I don't like about the way others act. I write to share who I am now. Not just to let you know, but to help me know. I just want to be accepted for the new person I am. For I am forever changed, I think. I miss feeling included. It's not that anyone deliberately excludes me. I just feel apart from the rest of the world. Like an alien, but slightly less green.

If you told me 12 months ago that I would be used to seeing pictures of babies who had died, I would not have believed you. I am ashamed to say I was a little freaked out by it. But then I held my own silent, beautiful baby girl. And I realised that she wasn't scary or upsetting. She was stunning. How could I be afraid of her? What was I scared of? Now I understand that I was scared of death. I had never seen someone who had died. I was scared of seeing what I imagined death looked like. In reality, there was nothing to fear.

I am changed. I honour the births and deaths of babies who are taken too soon. I look at their pictures and notice that in this one she looks like she is smiling, and in that one he looks cheeky. Because I know the bitter pride the parents of these children feel. Proud that they brought someone so beautiful into this world. And so sad that the world will never know them.

Some days though, like Friday, when I read this woman's story, I realised how much I had changed. And the reality that I know this pain really hit me. I know how she feels. I am not the one who can write, "I can't even imagine your pain." I don't need to imagine. It's in my memory, it's what I live. That fact floored me. This is my life now. I am...this. I know the stories and names of at least 50 ladies who are also this. I know their babies names. I see their precious children’s' photos. I grieve for them and with them. My new normal includes this.
 
Am I better for it, or worse off? I sure wish I didn't know the pain. I wish I had a baby girl crawling around at my feet and was too busy to write heartfelt blog posts. But I guess I realised I am better for knowing. I won't be the one who avoids the bereaved mother in pain. I won't be the one who scoffs when someone posts a pic on facebook of their beloved, precious baby who was born sleeping. I am stronger now. I can be better at not being afraid of death. And maybe with time I will stop being so afraid of life. I will live in this world again. I will be less alien. Green is not my colour anyway.

The Elephant In The Room

You walk in to a room filled with people.  Momentarily some people turn to see who has entered, and quickly look away or whisper a quiet word to the person next to them.  As you move through the room, a few shoot a quick smile your way and then hold a murmured conversation in hushed tones about you behind your back once you pass.  Many walk the long way round the room so they don't have to pass you and risk having to talk to you.  Those who are brave enough, venture over to say hello with a wary look on their face, careful not to talk about anything that might set you off.  We all sidle around the elephant in the room; 8 months ago my child died.

It's not that people intend to be nasty. In fact I'd say it's generally quite the opposite.  They are trying to be nice and ensure I don't have to think about my grief.  Because they haven't walked my path, they don't know that I think about it every moment of every day.  I try really hard to pretend I'm not thinking about Poppy.  But really my pain is like an old warn blanket that shrouds my shoulders where ever I go.

I hate going out.  I hate the fact that I make people uncomfortable.  I hate that people either expect me to be a weeping mess or to be better.  I hate the "I'm sorry" look and the whispered conversations behind my back and the fact that people are judging me always.  Even when they say they are not.  Just like I have many times past when I didn't really understand what someone was going through or why they were acting in a certain way.  I used to be 'people'. Now I'm on the other side, and I wish I was back over the fence.

The prelude to any outing in my house involves a delicate dance.  I get nervous, so I get grumpy.  G carefully tried to encourage me to not be nervous by reminding me why I'm going.  I adamantly refuse to go, mumbling more and more feeble excuses as to why I shouldn't go.  Usually I stomp off to the bedroom to finish getting ready and cry my anxiety out.  Then I cling to G, and he reassures me that I will be OK, and he'll look after me.  And we head off to be the social lepers we are these days.

It's all this stuff I find the hardest.  The stuff that hasn't actually changed; simple my perception of it has changed.  Like the idle conversation in the staff room at work which frequently brings about fits of panic when the topic turns to babies or pregnancy.  Or the birth announcements, or first birthday invites or new pregnancy scans which pop up almost daily on Facebook or in the mail.  It's not that the world has changed.  It's just me, and my dodgy insides gurgling anxiously.

I will admit I've never been a huge fan of big social occasions.  I don't enjoy making conversation with strangers.  But now it's like almost everyone is a stranger and we have to find common ground without mentioning 'that'.  Sometimes that takes a lot of work to do.  I really try not to bring people down.  I try to be 'normal'.  Often I fail miserably. But occasionally I manage a virtuoso performance.

Maybe it's all in my head.  Possibly I'm just becoming a little paranoid, I'm willing to concede that.  Some people are wonderful and give me time to talk, and realise I'm always putting on a brave face and try not to judge me.  But you don't have to worry about mentioning our loss or Poppy or babies. That's up to me to deal with.  It's much harder to deal with being a social pariah.  To have people avoid me or make decisions about my grief and whether they feel I should be better or not.  Or if I'm too better according to them.  I can live with losing Poppy.  It's bloody hard and I wish it were different, but I'm surviving.  I am not sure I can live with being ostracised.  It's a lonely world when very few people talk to you normally.

Here's the thing.  I quite like my elephant.  He's a lovely bloke and he really gets me.  But he needs a break.  Maybe next time I go out I can leave him at home, and try to manage without him.  But I can't do it alone.  I need a little help.  My elephant would appreciate your help, and so would I.

Hi Ho, Hi Ho, it's off to work we go...

Next week I go back to work.  Not the lovely '4 days a week, no meetings, leave at 3.45' work I have been doing for the past 6 weeks.  Real, honest to goodness, full time work. And to say I'm shitting myself would be an understatement.

In my mind I imagined by now I'd be OK.  Maybe not good, but definitely OK.  6 months is a long time, I figured.  Plenty long enough to get my life back in to some semblance of order, get Xav settled into school and generally be back to normal.  By the time I was due to start work again, I'd be able to manage.  Obviously, I was kidding myself.

I guess it all stems from this need we humans have to compartmentalise time.  Put a limit on things or phases.  From the terrible twos to the horrific teens, to 5 year plans and 10 year time limits, we like to know when things will end.  I guess in my head, my grief for Poppy would be manageable by the time I went back to work.  So imagine my surprise, as this deadline inched closer, when I was back to hysterical crying, no sleep and bursts of anger and depression.  Not at all how I expected to be feeling right now. 

6 months was a time limit I had for a number of things.  Returning to work.  Lose 10kg.  Begin trying for another baby.  Get back to where we left off when our life was shattered.  So as this milestone arrives I find I am not ready to be back to normal.  I am still struggling to just be, most days.  I am better at putting on a brave face, and I can walk through a supermarket without gasping out loud at babies or pregnant women.  But I'm certainly not as good as I thought I'd be.  And after 6 months of focusing on my healing, I find I'm not as healed as I thought.

I'm terrified I'll lose it at school.  Come across one stumbling block too many and make a fool of myself.  Be 'that poor woman whose baby died and is clearly not coping, poor dear'.  Not have the chance to just have a 'wallow in my own misery and pain' day and refuse to do anything except eat chocolate and cry.  Can I cope without those days?  Can I still be a dedicated, hard working teacher when the fire in me has dimmed so much?  When my head and heart aren't always in it like they were before?  Will I have the energy to keep it all together and still do my job well?

So it comes down to fear again.  Fear of what people will think of me.  Fear of how I will be judged.  Fear of myself and how I'll cope.  Fear of being afraid forever.  I've let fear back in, after it chased me down and caught me.  And it's slowly eating me up, invading my life and stopping me from moving forward.

It's not as easy to evade fear as it is to evade those pesky tram conductors who book you if you don't buy a ticket.  Fear sneaks up on you, and has you doubting whether you can do anything.  Fear and I are old enemies.  Frankly I wish fear would take a long walk off a short pier.

This is where I would ordinarily make a 'stand up to fear' final statement about how it won't get me, blah, blah, blah.  Well, guess what?  I can't guarantee anything.  But I can say I will try to face my fear bravely and with a new knowledge of myself.  I know I can live through some really bad stuff, and survive (albeit battered and possibly a little lopsided).  Surely I can survive going back to work without this blind terror?  I'm not certain, but I'll give it a go.  'Cause I decided a while back that fear would not rule my life.  It can have a room, somewhere down the back of the house, but it's certainly not moving into the master bedroom.  Part of me, but not in charge of me.  So if you see me walking around muttering something about 'F off, fear' or practising my air punches singing 'Eye of the Tiger', you'll know who I'm battling.  Feel free to cheer along, I might need some cheerleaders.

The Lessons Learnt...

All of a sudden another month has slipped by.  Next week we would have been celebrating Poppy's half birthday.  It seems impossible it's been almost 6 months.  I feel like I always start with that, but seriously, I am overwhelmed by the feeling of time galloping on, and life passing me by.  But I'm learning to live with it.


So, how does a bereaved mother feel 6 months on from the death of her baby? I wonder that myself, actually.  I feel...numb.  Still numb.  I guess if I really let myself feel everything, I worry I would become catatonic and you'd have to visit me locked up in a padded cell somewhere 'restful'.  Everyone in my position is different at this point.  Many people who lost babies around the time we lost Poppy are already pregnant again.  Some can't even fathom the idea of trying again.  But I still feel shocked that it happened to me.  Dubious that the whole pregnancy, her birth and death, all of it, even happened to us at all.


I live, though.  I've started working again, and as much as I find it hard I have great support there.  People who were there through my whole pregnancy, some who helped me through my previous losses, and who stand by me as I make the very difficult transition back to the real world.  My beautiful kids I've taught over the years who always say hello with such excitement that they got to see their Prep teacher.  Parents who go out of their way to come and say hello.  But on the flip side, there are those who go the long way around to avoid me, and the kids who blurt out, "Did your baby die, Rebecca?" with such innocence that I usually just say, "Yes, sweety," and walk away.  At work I switch off to all of my home stuff, and that includes my grief most of the time.  I have my game face on.  I call it 'surface living'.  Going through the motions like life hasn't completely changed.  Then at home, I am free to just be.  Frequently that includes crying.  Also, shouting.  And a bit of insomnia thrown in for good measure.  You can imagine how much Xav and G love being around me.


Many times, however, I find myself gazing at nothing and thinking about things.  Trying to find some reason in the madness, some calm in the chaos.  Trying to learn the lessons I'm hoping I'm meant to learn from all this. 


I reckon having kids is the hardest thing we women do.  Probably the hardest thing for men too, but probably in a different way.  I always imagined I'd be the mum of a brood by now, with structured play activities, menu plans with balanced dietary requirements, encouraging creativity and diligence and a desire to be kind to others.  Some of this I am, but I am not the mum I thought I would be.  I am more the harried, time short, stressed out, full time working mum.  There is nothing wrong with that.  It's just not who I thought I'd be.  Over the past 6 months, I guess I've had time to evaluate my performance as a mother, and sadly I've found myself noticeably lacking.  I always thought it would be me shaping the lives of my children, but in reality it is me learning from them.


What lessons have I learnt?  There are many, and some aren't yet complete.  From Xavier I've learnt that I can't protect him from everything.  Buy a safety trampoline and he still falls off and breaks his arm.  Try to protect him from the worst the world has to offer and then introduce him to death and grief at 5 years old.  I've also learnt that he will be who he is, no matter what I say or encourage.  He's a joker, and a hyperactive boy, and I can't force him to not be.  He will play rough, and enjoy lemonade on the odd occasion.  I am not his mother to force him into a mould that I envision for him.  I am here to help him discover what is acceptable in society and what isn't.  I have learnt that I am not the calm, collected, patient mother I thought I would be, and that he still loves me.  I have learnt that he can break my heart with just a few words, and I can break his just the same.  I have learnt that he likes hanging out with me, even if it doesn't include a doughnut for him.


What have I learnt from Poppy?  How could I have learnt anything from someone so sweet, small and silent?  I think the lessons I learnt from her are far deeper.  I discovered that pregnancy is joyous from beginning to end.  I learnt that joy can be found in the worry.  I realised that I needed to stop and enjoy life now instead of planning what will happen 6 months from now.  I became aware of my shortcomings as a mother, and most importantly, I learnt to accept the kind of mother I am.  I learnt that Xavier was and is a miracle, and I had to have and lose Poppy to really know that.  I learnt to take nothing for granted.  I learnt that I have lots of amazing people in my life.  I learnt I have an amazing husband, who is also a great father.  I learnt that bad things happen to good people, too many bad things, but also that good things can happen at bad times.  Like the people who have come into my life, or become more important in my life, because of Poppy.  Overall I learnt to live better because of her.  I learnt that life doesn't need to be long to be important.  I've lived 32 years and not touched as many hearts as Poppy did in 9 months growing inside me.


I guess you could say that Poppy taught me to be a better mother to Xavier.  She taught me that, no matter what, life is precious.


Where is a bereaved mother six months on from the death of her baby?  She is looking forward to the rest of her life, with a child in her hand and an angel on her shoulder.  And glad that, however awful, she had the chance to see her life for what it is; blessed in so many ways. The lesson was hard.  Hopefully, she'll get an A+.  Because, let's face it, she's still a perfectionist.  That's a lesson for another day.

Closing the last door

It's been a while since I've posted.  Although 4 months ago it seemed impossible, life has begun again in earnest, and I've been busy.  The vast expanse of empty time to be filled before I return to work is now filled with the humdrum happenings of life. 

Poppy's 4 month anniversary passed without most people noticing.  I thought even G had forgotten, but I was surprised when he immediately identified my teariness leading up to the date for what they were; the lonely reminders of my daughter's tiny life and that the pain still rages.  I'm not saying that I haven't healed a bit, I have, I don't feel that ache quite so keenly now, it rarely takes my breath away, but the abyss of grief is still in me. 

4 months seems like such a little amount of time, but it's hard to remember what life was like before.  It's seems like another life, someone else's life, in a sunnier, rosier place.  People tell me time will heal all wounds, but I wonder if I want to be healed.  The pain is what reminds me what Poppy meant to me, to our little family.  Truly I don't believe anyone really heals from this type of grief.

It's seems odd that it was 4 months almost to the day that G and I trooped off the our fertility specialist again.  It was a journey I longed to never take again, a reminder that our triumph in conceiving our second child didn't become the squirmy little bundle of joy I was hoping to one day take to meet the amazing doctor who made her possible.  A reminder of my failure to get her here safely, although I know in my head that's unrealistic.  In my heart I think I will always wish I had done a thousand things differently.

Anyway, off we troop to see Dr Kate, who is an amazing, no-nonsense, wonderfully up to date, reproductive endocrinologist.  And I knew I would have to tell the whole story from the start, once again.  Kate was kind and more than a little shocked at how unlucky we had been to lose two pregnancies to two unrelated and equally rare conditions.  One in a million, I am.  Great.  Why couldn't I be the one in a million who gets nice rewards like lotto wins, or major prizes in raffles?  No raffles for me, just rare medical conditions.  So we make a list of things to get tested before we even think about reembarking on the baby making journey.  It looks a little like this;

1. Test for Genetic Disorders (done with very little feedback.  What can be ruled out, has been)
2. Test for Viruses which make have caused Poppy's heart problem (Done, Adenovirus results positive, but we don't know when I had it, so not really that helpful)
3. Test for Hormone levels (always been fairly average, but worth a try)
4. Test for Anti Ro/La antibodies which cause at least 50% of the condition Poppy had (been tested, negative)
5. Test for various other rare, unlikely disorders (because, lets face it, with my track record...)
6. Get all results and reports from my OB, Poppy's cardiologist, and any other Tom, Dick or Harry that was involved in my care, and
7. Lose weight, because we know that helps me get pregnant and stay pregnant

OK.  Do all that and come back in 2 months.  Before leaving, Kate looks me straight in the eye and says, "we're going to get you a take home baby."  I was, up until this point, still a little whishy-washy on whether I wanted to embark on trying to have another baby.  The fear was enough to make me want to vomit, but I am trying to not let fear run my life.  But still, was I strong enough to do it all again?  But with Kate's words, I realised that what I wanted, more than anything, was another baby.  A little sister or brother for Poppy and Xavier.  A little person to heal us all, and give us hope. 

So after arriving with a sense of dread, I left with a sense of hope.  Maybe, just maybe, we might be able to make this happen.  With about a thousand doors to close so the draft doesn't blow up my skirt at inappropriate times.

I have entered 'make it happen' mode.  Booked in to the Immunologist to make sure there are no nasty immune problems happening: Check.  Booked in to a Geneticist and discuss what little there is to know about the condition Poppy had:  Pointless, but Check.  Get OB to fax info and test for viral infections: Check.  Start exercising and being a little less reliant on chocolate: Difficult, but check.  Book in to see Cardiologist and discuss anything else we should be doing to prevent this happening again...the last door to close.  Here goes nothing.

I should point out that the limited information we have on EFE (Endocadial Fibroelastosis: the heart condition which claimed Poppy's life) was gathered through on line medical journals, my OB's limited knowledge, and a Geneticist who had clearly googled the same studies I had.  Primary EFE, in the absence of structural injury, is almost never seen now days.  And when it is seen in babies as little as Poppy, it is almost universally fatal.  So obviously, we are keen to prevent it if we can.  Lance, the cardiologist, is hard to get hold of even as a patient, and given we are not really patients of his, it took ages to get in to see him. 

Closing that last door seemed like it was never going to happen.  We couldn't get in to see Lance quickly, and all the options seemed to clash with something.  We booked a time and ended up having to squeeze it in between a couple of other things.  We arrived half an hour late to a 'FULL' sign on the hospital car park.  Not a simple procedure to sat the least.  But a very kind Lance said he would still see us.  So in we went.

"I disagree with the findings of the report," he announces.  "Well, I believe there was more at play here that just Primary EFE."  Lance goes on to explain that the EFE was likely the result of Poppy's heart beating slowly for so long.  "It's basically a fancy word for scarring."  He describes the main problem, the one that is likely to reoccur, is the Fetal Heart Block that was his initial diagnosis.  It's between 20-50% likely to reoccur, but we can watch for it and treat it to prevent it getting worse.  We know what to watch for and what to treat for with heart block, and it's fixable after a baby is born with a pacemaker.  Still scary, but better than a death sentence.

G and I sit, feeling a bit gobsmacked.  It makes sense.  It fits with what we know about Poppy's heart.  It gives us a chance. 

I walk out feeling lighter, and calmer.  We agree that it's the last door, closed.  No more drafts up our nether regions.  Everything that can be checked off, has been.  It doesn't change anything.  Poppy is still gone.  But it gives us hope for the future.

Time to open a few more doors.