Showing posts with label Peripartum Cardiomyopathy. Show all posts
Showing posts with label Peripartum Cardiomyopathy. Show all posts

Thursday, 26 June 2014

Five Awesome Meals For New Parents

When I was pregnant, I was very blessed to have my freezer crammed full of delicious home cooked meals. 

They didn't appear one day by magic, I had been asked what we wanted for the new baby and in scandalous tilt at British humility, I answered the question squarely: I wanted things that would give me more time to enjoy my new baby.

Knowing what an amazing impact it had on our lives, I have tried to pay forward the love and cook up a freezer stash for some of my pregnant friends. 

After searching for recipes, and remembering the trauma of eating in the early days, I have come up with a list of ideas for anyone wanting to gift a meal to a new parent.

I'm not joking about the trauma by the way; feeding a newborn at mealtime – and my babies always needed to be fed at mealtimes, it was a frickin gift of theirs – usually involved staring at plates of rapidly cooling food that needed more hands than I had free.

These ideas are one hand friendly and cover the major food groups recommended by the all knowing interwebs. Actually they are just tasty recipes that are designed to be eaten while balancing a saggy newborn, the nutrition is just a bonus.

1. The Stew

The grandpappy of spoon food is the stew, so my first share is Asian beef shin by the queen of decadence, Nigella. There are a ton of traditional stew recipes so I shared one that's tasty enough to punch through the haze of near exhaustion.

2. Healthy Spring Rolls

Lamb pastilla look a lot like a Royal Ascot version of the humble spring roll. Made with Filo pastry and baked these little puppies are big on iron but easy on the frying which is great because mama just got done fixing her heart.

Crispy Moroccan Lamb Pastilla by Jamie Oliver
(c) Jamie Oliver

3. Risotto

Fight back against the fog of Baby Brain with smoked fish risotto. This one has the added bonus that it is flavoured with vodka instead of wine. If, like me, it has been a few months since vodka has passed your lips, I'm sure you’ll be overjoyed at having a guilt free reminder of how you got into your current position.

4. The Healthy Burger

Having spent the best part of a year jumping through culinary hoops, I want a bit of junk food indulgence. If you listen to the master of veggie burgers it becomes easy to turn an indulgence into a health food. These sweet potato burgers are actually filling enough to be a meal in themselves but for ease of eating, a few part baked rolls might make welcome company.

5. Not Forgetting Breakfast

You don’t have to be a new mum to think breakfast burritos are an outstanding contribution to the world of convenience food. It’s an entire breakfast. In one hand! That kind of simplistic genius is to be applauded, and then consumed like a rabid wolverine in the thirty seconds before your newborn next fills their nappy.

If you feel inspired to cook for a new mum, I would suggest you Google something sensible like “new foods for mums” to get more ideas but I’ll be honest, the people who have drawn up those pages seem to think that French trimming a rack of lamb makes it finger food.

Instead, my suggestion is simple: cook anything. As long as it’s made with love it will feel like a feast to a new parent. Even if you turn up with a round of peanut butter sandwiches, I can guarantee you’ll be welcomed with open arms. Except to a house with nut allergies, then you should probably just bring a pizza.

Tuesday, 6 May 2014

Every Mother Counts - The #Every2 Campaign

This weekend we celebrate Mother’s Day; my first as a mother of three.*

In honour of this insane occasion I want to join in with the Every Mother Counts #every2 campaign and do some reminiscing. 

In 2009 I was born a mother after what felt like an endless wait. It was a bittersweet moment for me birthing under the influence of some heavy duty opiates and in a situation I very much wanted to avoid. It was also the craziest trip of my life and, as my best friend had promised, I spent a long time looking around me waiting for Alfie’s real mama to arrive.

Recovering after my cesarean #every2

In 2011 I was born a mother of a daughter and shortly after nearly died. I went into heart failure (known as PPCM) and spent a few weeks in hospital scaring the medical staff by refusing to be a good patient. I made a full recovery, but there were some dark and scary moments where I stared down at my newborn baby girl and sobbed at the thought that I might not be around to see her grow up.

Recovering from a cesarean with PPCM

In 2013 I was born the mother of three in a beautiful and healing birth attended by a friend, fellow mother and loving doula. I knew there was a threat of relapse hanging over me but I was well supported and came through the hard work of growing a baby without incident.

A healing woman centered cesarean

Many women aren't so lucky.

As I sit with my babies around me typing this (I’ll edit it later to remove the keyboard smashes) I feel blessed a thousand times over to be here. I enjoy every crazy making moment of being a mama and my heart breaks for every family deprived of the chance to do likewise.

Every Mother Counts  is working to reduce the instance of maternal death across the world. If you can spare 2 minutes, you can get involved.


- UPLOAD 2 photos of the day you were “born” a mother on the EMC Facebook portal.
- RUN 2 miles using the Charity Miles app (which will donate $0.25 per mile to EMC)
- SHARE 2 facts about maternal health on 2 of your social media networks.
- DONATE 2 dollars to Every Mother Counts.
- GIVE 2 gifts with one purchase by giving a gift that also supports maternal health programs around the world.
- INVITE 2 friends to Take 2 actions of their own.

Becoming a mama is the work of ages. 

When I gave birth to Miss Olive I finally felt that fabled connection with the generations of birthing women who had gone before me. It was wondrous and humbling and I was grateful to finally count myself as a part of this female narrative.

The tradition of birthing warriors can feel distant to mothers in the First World but those women are there, standing in the shadows, roaring us on.

For most of the planet, the shadows are longer and filled with the daughters and sisters and wives who are taken too soon, leaving a hole where the heart of the family should beat.  

I like to think that it doesn't have to be that way.

*You lot in the UK have already had your Mother's Day obviously, but join in anyway!

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The Maybe Diaries has been shortlisted for a Brilliance in Blogging 2014 Award. 
If you can spare a minute, please head over to the voting form HERE
All you need do is enter a name and address and tick The Maybe Diaries under Section 5.

And thank you SO MUCH for helping me to get this far!


Thursday, 27 March 2014

The Elephant in The Room – Baby Eczema

There’s a part of Alfie’s history that used to carry a degree of guilt for me; something I had almost forgotten I had felt right until I came across this article

As I was reading it some Scooby Doo style weirdness happened and I wasn't looking at the face of another boy, I was looking at Alfie and reading someone else tell our story.

My sweet boy spent a chunk of his first year wearing socks on his hands and sleeping with us holding his arms to stop him from rubbing himself raw.

He was covered from head to foot in raw, weeping, crusty eczema that would come off on you when you hugged him.

He had a particular smell that seems to have ingrained into everything he touched and destroyed the vast majority of his clothes.

His eczema bothered him day and night. And by bothered, I mean that he would bawl in frustration that the itching just wouldn't stop.

As a parent it was a horrible thing to watch and I struggled with guilt because I always felt like I could have helped to prevent it.

While I was on maternity leave, I expressed milk for him: It wasn't loads, but apparently it was just enough. As the amount I expressed dropped, the eczema increased and I watched a small red patch on Alfie's temple slowly spread across his body until it completely overwhelmed him in a red, itchy hell.

The emotions and pain of living with baby eczema

In truth it wasn't just Alfie who was in hell, we were right there with him.

We tried different creams, different formulas, bath preparations and washing with soap nuts.

We did what you so often have to do with babies and became research students in the subject of “what the hell is going to make this better?”

We found a fairly local paediatric dermatologist who had a glowing reputation and kept asking until we got a referral

We grew tired of people telling us that he would grow out of it because it completely negated the living hell we were going through.

We stumbled around in the dark, discarding the things that made no difference and keeping the things that helped.

Things that worked for us were mostly things we were told not to try or things that couldn't possibly make a difference:
  • We fed Alfie formula based on goat milk rather than the hydrolysed or moo juice versions.
  • We cut out eggs and shop bought bread because they made him worse.
  • We used a combination of hydrocortisone and an emollient made of beeswax and chamomile.
They seem like three easy bullet points but they took us months trial and error.

Once we had these things in place Alfie improved, and I’m sure the same people who told us he would "grow out of it" felt vindicated.

We were just grateful to have found the magic combination that gave our son back his life.  

So why am I writing this three years late?

Two reasons:

I write this blog as a way to support both myself and other mamas, and this is something I can support the hell out of. As annoying as it when you are arse deep in a living hell, sometimes it might just stop you drowning to know that other people have been exactly where you are and survived.

Dealing with baby eczema is about trying different things to see what works and this post may contain an idea you haven't tried before. If it works, let me know, I'd love to hear your success story.

The second reason is because with the power of hindsight, it occurs to me that this is the single biggest reason I fought so hard to give the girls breast milk and I have never credited it.

As a result of what happened to Alfie I educated myself about ways to protect my future children and came across research about probiotics in pregnancy which gave mothers milk containing LGG, La-5 and Bb-12 probiotics from when they were 36 pregnant until the babies were 3 months old.

Figuring prevention was better than cure, I religiously took a probiotic that contained LGG and Bb-12 strains with both the girls. Thanks to my PPCM I didn't always make much milk but even if it was a mere drop, made damn sure they had some of my milk at every feed for the first three months. 

I don’t know if it made a difference - genetics are never that simple - but neither of them has suffered from eczema.

In parenting terms, that's all the victory I need.

Thursday, 13 February 2014

Joining a New Community - The Heart Sisters

​This week I became a Heart Sister.

Photo by kind permission of www.bysharyn.com
That is to say I joined a website for those of us who concern ourselves with PPCM - or pregnancy induced heart failure to the uninitiated.​

It may seem like an odd thing to do to join an organisation that involves itself with a condition you used to have, but for me it feels entirely fitting.

When I had Esme and my heart went into failure, the single hardest part was the big fat question mark that suddenly hung over my life.

We don't know what happened. We don't why it happened. We don't know if you will recover. We don't know how to treat you. We don't know if you can have more children. We don't know, we don't know, over and over.

Hindsight being what it is, now, I know.

I know I either had a Takotsubo reaction, or PPCM during Esme's section. I know that I could have taken Beta Blockers and still breastfed. I know that I could have more children and I know that for me, recovery has been complete.

I know these things because I went out and found the answers for myself.

Becoming a Heart Sister means I can share what I know with scared and vulnerable women who are left facing the hell of "don't know" when they should be enjoying becoming a mama. I can talk to professionals about how to avoid making "don't know" feel like a black hole of despair. I can talk to other PPCM survivors and we can look past the "don't know" together.

Wednesday, 13 November 2013

The Healing Birth of Miss Olive

I’m painfully aware that I owe this blog a birth story. It’s not like I haven’t had the time, right? It’s only been 5 months.

My God has it really been 5 months already?

For those who missed it, Olive Erin Batsford was born by Caesarean Section - my third – so perhaps there’s not that much to share. Except this birth was private and intimate and healing and peaceful and beautiful from start to finish, so perhaps this is a story that should be shared.

I spent my pregnancy with Olive working hard to find a birth option that would keep my heart safe while also securing a good birth for us both. That seems like a throwaway phrase – good birth – but it took up 90% of my brain power for most of the pregnancy to process. There were times I was so consumed by turning over this little pebble in my mind that I would forget to breathe.

Eventually I came to a place where I found some answers: I wanted Olive to be born with gentle hands guiding her. I wanted her to be left covered in her war paint and to hold her skin to skin. I wanted her cord to be left alone so that I, the mother who had grown and nurtured her for so long, could help her adjust to life separated from me. There would be no needles jabbing her, no strangers holding her, and I would be supported by a wise woman.

Initially I fought to make this birth a VBAC because the idea of achieving any of this with a c-section seemed impossible. I was wrong: I achieved all of it and more with the help of an amazing and enlightened hospital.

The morning of Olive’s birth, it was just me and my doula Mel.

For anyone wondering if the gender of your birth supporter makes a difference, there is not a font big enough to write this: YES! Birth with a woman supporting you has a completely different energy. I felt like a part of a tradition with Mel beside me; a link in a chain of a thousand generations of women bringing new life into the world. She also gave me support I didn’t know I needed, feeding me hypnobirthing cues when I didn’t even realise I was tense, and allowing me to be vulnerable and weak by mothering me and walking alongside me as a fellow labour veteran.

The staff just blew me away with their enthusiasm and support. I was asked a hundred questions about how I wanted to birth: Did I have a bag for the placenta? How did I want Olive to be handled? Did I want the lights dimmed? Did I have any music? Was it OK if they put tags on her? What were my thoughts on Vitamin K? Each asked respectfully and the answer carefully noted.

My big fear for this surgery was that for some reason I would need to be put under a general anaesthetic, and there were a few moments where I was fearful that could happen: Once during the siting of my spinal my blood pressure dropped and they had to hope that they had already given me enough, and again when we realised that they hadn't and I could still feel more than I should. Both moments overwhelmed me with emotion but Mel and the anaesthetist were calm and supportive and we found solutions.

This section was far rougher than my other two – apparently I had a lot of scar tissue - and the bruising is still healing 5 months later. So it took a shit ton of heaving and huffing before there was a pause, the surgeon asked me if I was ready to meet my baby, the screen was swung out of the way and slowly but surely, my baby was walked out of me and just as I had requested, dumped onto my chest still deliciously cheesy.

Natural woman centred caesarean section - walking the baby out

She was my first vernix baby and despite some comedy moments of being nearly suffocated by her as she slid onto my neck and nobody having a hand free to move her, I was already in love with her silky skin. She is still the softest of all my babies 5 months later and I've lost many an hour of sleep nuzzling her velvet neck.

Natural woman centred caesarean section -  skin to skin in theatre

For the first time I felt the urge to lift her leg and check she was a girl, and to look into her eyes and say “hello baby”, bonding moments I had missed the previous two times.

Natural woman centred caesarean section - bonding

The placenta was placed in a dish beside us and there is stayed until that evening when I looked at my baby girl and knew she was ready to be her own person. It was a quiet moment when I cut her cord and she didn't complain, just adjusted herself to snuggle into my chest and slept on. A lot of people say lotus babies are more content and I think I would agree with that, Olive is definitely my most chilled baby.

Content lotus baby

The only thing that didn't go to plan with Olive’s arrival was her father. Keith is one for nervous energy and for reasons known best to him had worn himself out trading on his store of adrenaline until he came into the hospital and passed out on the floor beside my bed. Poor Mel had to deal with crazy-cat-lady-Esme before she ripped up the whole ward, and I had to call Keith’s dad to drive all the way from work to come and take them all home. Not ideal.

Olive spent the first 24 hours skin to skin with me and we spent 2 days in hospital cwtched up in bed together covered in a patchwork blanket from home. Nobody asked me to put her in her goldfish bowl, nobody asked me to take her out of her sling when we went for walks to get a cuppa, we were just left to quietly fall in love.

Sometimes a good birth can take the strangest forms.

Wednesday, 28 November 2012

Where have you been all my life?

I went to see a maternal cardiologist this week, along with my best friend who like a true friend gave up her evening to come and watch me be prodded and poked and discuss exciting PPCM related things.

By the time we left the hospital the both of us were wondering if we could persuade Dr Walker to be our GPs, Obstetricians, Dentists, in fact, we just wanted to take her home and never let her leave.

Dr Walker is the most wonderful doctor I have ever had the pleasure of meeting. She was interested in my story (told by me rather than my notes) she listened to my hopes, allayed my fears, answered my questions and all with a dose of humour.

In short, she was an angel.

After looking at my notes and us having a discussion, Dr Walker has decided she needs to review my fluids chart from my section and the first ECG that was done when my chest first started crackling. It is her suspicion that something about the standard practice of a section that was too much for my heart at that time. It is her suspicion I didn’t really have PPCM at all and if that is the case, I’m basically a normal VBA2C woman for the purpose of this pregnancy.

Even better though, I get to see her every 6-8 weeks for the next 6 months because she is  all about the gold standard treatment and wants to treat me to regular ECGs just to be on the safe side.

Regular sessions with a supportive knowledgeable doctor who treats me like a proper cognizant adult? Yessum, I’ll take 2! 

8 Weeks - Apple Trees is a Kidney Bean.

I got a call last night inviting me to a 2 hour appointment with a maternal cardiologist next Tuesday.

I’m not sure if I’m scared or excited although I’m trying to be neither at the moment, I’m trying to think calm and serene thoughts.

Sometimes I succeed.

I have some big important questions to ask Dr Walker when I see her. The kinds of questions I should have asked her before I was 8 weeks pregnant because some of them are a bit of a moot point now.

That is the way these things inevitably go though, isn’t it? First baby takes over a year to put in an appearance and by the third you are afraid to sneeze in case it makes an extra blue line appear.

I also had a lovely chat with a lady called Amanda Dixon at lunch who walked me through all the lovely things I can do with a placenta to try and support my heart after the birth.

Who knew placentas could make so many different things? Not me! I thought your choices were smoothies or tablets but apparently not. 

That’s what I love about this birth game, ever day’s a school day!

No I mean that literally.

You wait almost a year trying to learn everything you can and then have a small but finite window to make the magic happen. If you get it right you get to go home with your baby, if you don’t you get to spend the rest of your life working in a fast food kitchen wondering why you don’t get ID’d for wine any more.

Something like that anyway.

Tuesday, 27 November 2012

The World Needs More Comedy Doctors

I had my appointment with our comedy doctor today in order to go through the formality of telling people I'm in the family way.

Knowing his penchant for amusing Mediterranean quips I thought I'd set him up:
"I'm going to start your day with a laugh: for the third and final time, I'm gonna need a midwife"
He didn't let me down:
"Is that before or after the psychiatrist and the two bricks for your husband?"
Chapeau sir, chapeau.

So the boxes have been ticked, the forms printed and it is time to try the unthinkable and plan a positive birth with the help of a consultant.

It won't surprise you to know I have already been devouring research about good perinatal practice for cardiac patients and would you believe it almost looks like the sort of plan I can get behind.

I hear phrases like "Spontaneous onset of labour", "limiting or even avoiding active maternal bearing down (‘pushing’)" and "no bolus doses of oxytocin in the third stage" and in my head we have us a nice calm Lotus VBAC using Natal Hypnotherapy

I'm determined this time not to spend time and energy tilting at windmills in my head. That means for now, I am happy, calm and positive about this pregnancy and birth.

Monday, 23 July 2012

Family Reunion

When we transferred to hospital, Keith came up with the idea of having a family session in the pool when we came home. A sort of reclaiming of the birth and a gentle welcome into the family for Esme.

OK so it took two weeks and involved a hyperactive toddler.

Potato / potahto.
Of all the lovely photos we have of our little rugrats, I love this one the most.


PS Thank you Keith for restraining yourself for the last 8 months - I know how much you wanted to post this photo

Thursday, 19 July 2012

What Becomes of the Broken Hearted?

Admit it, you’ve got that song in your head now haven’t you?

You can thank me later.

I hope a lot of you will already know what this post is about, but I have a bit of an ulterior motive in writing it. We all know I’m a compulsive researcher, and I’ve been looking for information on Perinatal Cardiomyopathy since I was diagnosed but found very little: A Wiki post here, a teeny tiny study there, and a Facebook group with a pocket sized membership. I hope that Google does a good job of indexing this piece because I’d like anyone searching for Perinatal Cardiomyopathy to have something to read.

How many times can I say those words before it gets boring do you think? Maybe I’ll start calling it Perennial Cardiomyopathy by mistake again to see if anyone is still paying attention.

So back to Esme being born and me sitting in a hospital bed in a haze of post birth hormones having cuddles and feeding and already wondering when I’ll be able to go home when a happy young nurse bimbles over to do my obs.

Pulse – Excellent
BP – Beautiful
Oxygen Saturation – Shot-to-shit.

Nurse “Hmm, do you feel OK?”
internal monologue says “I’ve been awake for 3 days and just had major surgery, what do you reckon champ?”
My actual reply “Umm, not too bad”
Nurse” You appear to be crackling”
Me ”Am I not supposed to be doing that?”
Nurse “Not s’much”

Herein starts one of the most confusing periods of my life.

I was given an ECG, carted off for an x-ray the sum total of which was something was very wrong with my chest. It was full of fluid and my heart, for reasons unknown at this point, needed help.

Emmie and I were packed up and moved straight over to Cardiology where a lovely midwife sat with us through the night and I was started on some diuretics. I was offered beta blockers as well but declined them on the basis that it would have prevented me from breast feeding.

This did not please the consultant who somehow felt a good way to motivate me was to ask whether I cared about my health.

I was so annoyed at the whole exchange I had to tell the world of Facebook of my disgust.

Which made me feel better and also had the unexpected bonus of getting me a new consultant who actually gave a good god damn about me and my needs.

The next few weeks were confusing because there was a lot of conflicting evidence as to whether I had suffered a heart attack or heart failure. The ECGs said one thing, the blood tests another and it was a very frustrating place to be when you don’t know what any of it means to your future prospects.

I was on strict bed rest and hooked up to remote telemetry monitored at the nurses desk. If anyone wonders if these things work, they do. I was blessed with a visit from family and friends a few days into my hospital stay and the excitement of it made my heart rate soar. They were at the door like a crack squad of Hare Krishna telling me I needed to calm down before I brought on a repeat performance.

They had a point, the place was a clown short of the Moscow State Circus.

So every day they took more blood and ran more ECGs. I sat in bed with my baby girl and watched crappy daytime TV. I took drugs, got weighed, measured, prodded and poked.


They took me for an angiogram and I’m not sure whether I was more repulsed or fascinated by watching real time images of my own heart beating.

By this point I was becoming something of a minor celebrity in the cardiology world because nobody could pinpoint what had happened or why. I was discussed at length, expert opinions sought and I got so very tired of hearing “In my years of practice, I have never seen this before”.

I was low by this point, trapped in hospital when I wanted to be out starting my new family life and getting nowhere fast and when the consultant came to see me saying they wanted me to stay in for another few days I lost the ever loving plot and bawled for 4 straight hours.

I bawled until the consultant came back and relented, saying as long as I promised not to move I could go home after all. I think perhaps the crack squad had been onto him about what he was doing to their telemetry.

So I move home I did, and behave myself I did, living on the sofa day and night and taking slow steady steps back to a normal life.

I left hospital still without a clear diagnosis of what had happened. All they knew was my ECG was returning to normal (although my heart was still in moderate failure) and there had been no further acute episodes so all they had left to try was to run yet more tests after a few months to see what kind of after effects they could see.

There were none, and so to quote my cardiologist, in the absence of any other indicators, we can only say that you suffered Perinatal Cardiomyopathy (literally meaning heart failure at or around the time of birth) from which you have now recovered.

The prognosis for me a good one: my heart being completely normal now and the only question that remains is whether we can or should have any more children.

I don’t have an answer for that yet, but I’m working on it.
 
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