Pure white love. 

I’m sharing Arlo’s story with you all, but I’ve this instalment is a little break from it. 

Mother’s Day. 

It’s just a day. We’re a little bit nicer to our mum’s, we make that special effort to see the grandmas and nannas. Maybe some afternoon tea, a walk along the beach, climb a mountains, take on the view, smell the flowers of spring, share perfume, flowers, candles, wine. Where we share cards with the special ladies that mean the most to us, it may be a sister, auntie or friend. 

It’s the day where I point blank refuse to cook in my house, where I don’t make the cups of tea, where as sometimes I would give in, parched and bored of waiting, only to hear, “I was just about to do that!” And I would roll my eyes and carry on regardless. But not today. It’s Mother’s Day and I’m not budging. 
It’s the day I spend time with my son and do lovely things and think about how lucky I am.

This Mother’s Day has been different. I’ve been all those things, but without the stubborn effort of previous years. 
There’s something missing, even though that something has never been with me on Mother’s Day. 

Our second son. 

It’s not like I can think, about the beautiful baby I had with us on Mother’s Day last year, because he wasn’t born. It’s a horrible unsettling feeling. Something is missing. 
Our baby is missing. 
I’ve felt his loss at other celebrations throughout the last 5 months. Birthdays, Christmas, but none like today and I don’t particularly know why. Maybe because there’s the distraction of others at birthdays and Christmas, the coming together as a family, going out for meals and opening presents. This day is purely about mothers and their children. 

I’ve noticed today a lot more than I thought I would. It’s not a day we usually make a massive song and dance about, where presents are more something to treat yourself or treating each other to afternoon tea or a take away, spending time, something to relax with rather than keepsakes. Just the way we have always done it, my mum usually gets wine as she has to put up with me so I feel she deserves a glass (or bottle!). 

Our special angel has never been far from my mind. He never is, but Today I’ve felt his absence even more. I’ve felt how unfair things are. How these occasions make things lay so heavy on your heart. I’ve experienced a glimpse of the pain those mothers with no living children must feel. And I feel exceptionally lucky to have a son with me here, though one with the stars and angels. My heart is shattered but those pieces are tightly bound together by my living son, every single day, but they pull even tighter to hold me together on days like this. There are no words to describe the loss other mothers know. Mothers that have no children living on earth. 

My son has noticed the shift in emotion too. He made me a Mother’s Day card at school, but spent last night making picture for me instead of coming in to watch tele after tea. 

On his picture he said he was sorry that Arlo had died and that he missed him. My heart well and truly broke. Though it is so touching to be safe in the knowledge that he would always have that bond with his brother even though they were cruelly barely given the opportunity to know each other. Forget jewellery and perfume and expensive meals. That means a million times more than any gift. 

I’ve had a busy day and I kind of chose to, less time to sit and dwell in the could have beens because I don’t think I would have made it through. I’ve spent time with family today, and time on my own to reflect. But I had to do something. On my way out to the car this morning there was a pure white, fluffy feather by the drivers door of my car. Not everyone believes, but I’m comforted by knowing it was a message from our boy in heaven. I have found a previous tiny feather with a tiny slug on the under side, this reassured me that Arlo is with my granda up there!! As it is just the kind of trick he would pull. No slugs this time, just pure white love. 

In a way I am so grateful for today, but in a completely different way to usual. I know my boys always have a brotherly bond unbreakable by death and that I am loved by both of them. I’m also grateful that I still have my mum and nanna to celebrate Mother’s Day with. (Even though I still think my nanna is mad that I didn’t have a piece of shortbread despite her trying to force one upon me at least 5 times.) I mentioned friends earlier on too. I am extremely blessed to have amazing friends who I had brunch with this morning and that I have friends who have messaged me throughout the day to tell me they have been thinking of me. A partner who is always there for me and held me while I sobbed in bed to comfort me. 

 I’m one lucky lady.

It’s all pure white love, no slugs. 

Where there are heartbeats, there is hope. 

Where there are heartbeats, there is hope.

I tried not to google and read things that aren’t written by medical professionals, but it’s difficult! Extremely difficult! You need that quick fix, something to reassure you that there is hope! Most things I found about Pprom (preterm premature rupture of membranes) were on forums.

In pure desperation I posted on a pregnancy and baby forum. A kind lady let me know about a non profit organisation called ‘Little Heartbeats.’ I sent an email and received one back from within a few hours from a lovely lady called Ciara. Ciara immediately asked for my address to send me a pack.

The organisation had the slogan, ‘where there are heartbeats, there is hope.’ This was something Ciara was and is very passionate about, as she knew babies could survive their waters breaking and go on to live a full and happy life. Having lost a baby due to Pprom herself, Ciara knew exactly what mothers like myself were going through and was always there to offer advice. She works tirelessly to support anyone who’s waters have broken. She is always there in the Facebook posts/messenger/ email to offer support which is incredible. She does all this because she wants change in the way doctors deal with Pprom. And sending out information packs is her way of doing this.

Through little heartbeats I found Facebook groups of those going through similar situations at the same time or who have been through them, all offering support.
I’m so glad I found these groups because you can feel so alone on this journey.
She said a pack had been sent to me, It contained all the information I needed about Pprom, questions to ask the doctor, a regime to follow. Including what to drink, to put myself on bed rest (even though this wasn’t something the doctors felt was needed) a colouring book and crayons for bedrest and a heartbeat bear.

This bear allows you to record your baby’s heartbeat and place inside the bear, and when you cuddle it you are able to hear the babies heartbeat.

The informations sheets were invaluable too, arming you with all the information for fight for your baby’s life.

I’ve found through travelling this journey they Pprom is something that, because of its extremely rarity, divides opinion. Every doctor you meet has a different treatment plan. So having that information, knowing the questions to ask is something that empowers you.

Throughout this time, I couldn’t have been more grateful for the support from the groups. Since my 20 weeks scan, is kind of for used to nothing happening apart from that dreaded worry in the pit of my stomach, but nothing was happening with the baby. We were no where near ‘normal’ but we were holding our own. ‘No news is good news.’
The two week period between appointments in Liverpool was to change that. Day was getting ready for work, I was still in bed as was Alfie. He shouted his goodbyes and I heard him open the door. That’s when I felt it. I was bleeding. I shouted and hearing the panic in my voice he came immediately. We phoned the hospital who advised me to come in. I don’t remember anything about getting ready or getting to the hospital, or dropping Alfie to grandma. The one thing I do remember is bringing the bag with the teddies in. I think in my head I was so convinced of things going wrong that was in the forefront of my mind.

I was as terrified as I could possibly be, but all I felt was numb.
The hospital checked me over, I wasn’t in labour, the bleeding stopped. I questioned the doctors about what was happening. I can’t explain to you how this feels, you yourself feel ok, but the life growing inside you is far from it. You’re in hospital because the professionals are there to help you, that’s what happens? Still in my head I was going to be made better, or offered reassurance.
It’s a bitter pill to swallow that nothing could be done. I think the expectation was that I would miscarry and that would be that.
After being checked over I was sent home. Feeling more miserable and hopeless than before. As I lay down on the sofa and logged on to the support groups the door bell sounded. I thought about leaving it as I didn’t want to face anyone, but I dragged myself to the door to find a parcel delivery man there. I took the parcel, most likely without the pleasantries I usually would have exchanged, because raising a smile was too much. I opened it to find the parcel from little heartbeats. The first thing I did was open the bear, a ran upstairs, grabbed the Doppler to listen to the baby’s heartbeat and recorded it and put the recording device back inside the teddy. Hearing that reassuring sound after that day we had had was indescribable. It reminded me that even though all around me there was doom and gloom and misery and uncertainty and that understanding that at any moment something could go wrong. That even though the expectation from every medical professional was that my pregnancy would end and our precious baby wouldn’t survive, this sound reminded me that…

WHERE THERE ARE HEARTBEATS, THERE IS HOPE! ❤❤

It’s little things like that that can give you the slightest glimmer of hope. Finding ciara and those groups when I needed them the most, the parcel being delivered once I had returned from the hospital.

I cannot thank little heartbeats and Ciara enough, what an incredible, passionate woman, campaigning so hard for change on behalf of all women going through the most awful of times. She and little heartbeats will feature in future blogs too. She desperately wants to get registered charity status, please support her if you can. She wants so much to keep sending packs to women all over the world to give them that support, arm them with that information, and have that recording of that most precious heartbeat forever.

Two perfect little kidneys.

Two perfect little kidneys.

We received a letter from Liverpool women’s foetal medicine unit, they had made an appointment for us the following Thursday. So I went back to my old routine of lying in the sofa, something that an active person finds increasingly difficult, I can tell you!
I couldn’t just lie around and do nothing the whole time. If I was able to venture out it was somewhere where I didn’t have to walk far and I could rest. I remember going to the Point of Ayre with Alfie, Mum, Dad and the dogs. Upon arrival, Dad pulled a sun lounger out of the car so I was able to lie down while Alfie played and the dogs chased around like crazy!

Sometimes people who are in charge of your care forget that, this is everyone’s baby; child, grandchild, niece/nephew, great-grandchild, great niece/nephew an addition to the family that would be welcomed by everyone. It’s not just the parents who feel this, it’s everyone. Everyone feels it as the ripple spreads. Close friends and family did their bit to help when they could. And as an fiercely independent person part of me hated being the patient, but another part was so touched to see how supported we were.

Another trip I made was to marks and spencer. Because I had been told repeatedly that my child would not survive, and that when in Liverpool women’s I would be offered a termination. It was like everyone had written him/her off and made me realise that at any point the baby may be able to fight no more. I felt like I needed to get something for him/her because all hope seemed lost even though we were all doing everything in our power for the baby to hold on a little longer.

I chose 2 small rabbits. There was so much choice, some toys were overwhelmingly big for a baby that could potentially be born so small. Two simple rabbits with pink noses. One for us to keep and one for the baby to keep regardless of the outcome. It was something I had to do to be prepared.

It’s a strange situation to be in, being able to envisage two comes simultaneously and attempting to prepare yourself for both too, because at the drop of a hat either could be possible. Of course you hope for the best, but when your situation is so dire you have to prepare yourself for the worst. For your own sanity.

The week before our appointment meant many conversations had to happen. And most of them conversations you wouldn’t wish on your worst enemy in their darkest of days.

Liverpool!

It’s funny being put in a different place and not seeing a familiar face, even if it’s a glint of familiarity. Nothing. It’s unsettling when you’re from a small place and you would definitely have recognised a face or two.

Everyone in the foetal medicine unit is there for a reason, and never normally a happy one. Don’t get me wrong, they have lots of positive outcomes, but in those waiting rooms there are lots of brows furrowed with worry. All high risk mothers or babies. I don’t know how we did it, but after a mammoth wait in the waiting room, we were finally called through. I don’t know where my mind had been, but I had managed to put out of my mind the real reason I was there!

Until, that was, I lay down on the bed in the room waiting to be scanned. Everything can be completely unfamiliar, a completely different city, hospital, room, but when you see that bed, with the universal white roll, the bottles of gel, the scanner and those screens, you can pretend no longer. Everything is the same. Unless a miracle has happened, there’s going to be no drastic reprieve.

I cried before the doctor (who I know now is a professor, not a doctor) set foot in the room. He was different though. He put me at ease immediately. He even joked about the fact I had tears streaming down my face and he hadn’t even spoken.

As much as I wanted the scan to check everything was ok, I dreaded it. I didn’t want to hear again that my baby wouldn’t make it.

Especially with the less than 1% chance we were given at our last one and the fact we had been told we would be offered a termination. I did not want to be asked that question. Those words sent shivers down my spine even thinking them.

The professor put us instantly at ease just by his manner. He scanned me in silence. Taking in every detail throughout his thorough examination of the baby, to see if the baby really did have problems with their kidneys and if they had stopped growing, which had been mentioned at the last scan too.
Even in the blackest of times a change of face, opinion and experience can reassure you the tiniest bit.

There was a small pool of water.

The membranes had visibly broken.

The baby was perfect measurements.

The baby had 2 perfect, fully-functioning kidneys.

The baby was perfect.

A termination was not offered.

Someone believed in our baby and was willing to give them a chance!!!

There were still lots of ifs, buts and maybes. I could still go into labour at any given time. The baby’s lungs may have not developed enough to survive, but we had something.
I would be scanned again in 2 weeks in Liverpool at 24 weeks gestation, if I got there. And if I did I would be admitted to Liverpool women’s to give my baby the best chance.

There was hope. There was a plan.

Two things that had previously been missing in action.

Baby bump the day we went to Liverpool for our scan. ❤️

Waters, watermelon and waiting.

 

Waters, watermelon and waiting

After leaving the hospital that day we went home and collapsed straight into bed. We both hid away from the world under the covers. And cried.
How do you even go about beginning to process this information. Being told it’s unlikely your baby will survive. Along with that, how do you carry on like everything is normal? The answer is because you have to. When you’re a parent you can’t be a sobbing mess, moping round the house. Well, of course you can, and as good as I know it is for your children to see you show your emotions, how are you supposed to display them when you are unable to comprehend them yourself?!

No, you get up, you dust yourself off, you find the strength within to throw some chicken nuggets and chips in the oven for tea, because even though the feeling of eating to you makes you want to vomit and even though almost everything in your life seems out of control, you still have someone else in your life to care for and to carry on for. You eat because you need your strength not only but the life growing inside you that needs everything he or she can get.

It was the summer holidays. A time I get to spend quality time with Alfie. Over the holidays we do anything and everything adventurous! Of course this year would have been more reserved, but I still wanted to go on adventures with him, even if it meant taking a backseat for this year. This wasn’t to be. I was too panic-stricken to even think about leaving the house! Too scared that something would happen as I’d been told over and over how much more susceptible I was to infection when I had no waters. Our family rallied round to care for Alfie and help him have a summer holiday while stayed at home and researched. I wasn’t prepared to sit back and let our baby pass away without a fight and it seemed the baby felt this way too. I still felt movements and kicks throughout the day. While I searched for similar situations on the internet. I found things on forums, hospital papers with official statistics on, I read them all. I needed to know what our chances were.

I read their advice and suggestions. I needed to drink plenty of water throughout the day and put myself on some form of bed rest. I also needed watermelon and coconut water because it contained electrolytes and this meant it was likely to stay in the body longer than water. I wasn’t told this by the hospital because their view was just to let the inevitable happen. And in their professional opinion it makes sense, but as a mother, they have absolutely no clue how much you are prepared to fight for your baby!
This was my plan and this was what I did. For that next week I barely moved off the sofa, I drank as much water as possible along with coconut water and I lived on fruit. My mum brought a constant supply of this in to me. I watched Lorraine, Jeremy Kyle and recorded episodes of countryside 999! All the while Day had to carry on going to work and we had to carry on with some form of normality (ha, normality, oh how that word would come to be stretched and morphed into all sorts of shapes over the coming months!!) for Alfie and for our own sanity. However, just how he did this I really don’t know. I couldn’t face seeing a single person.

I text my friends, the ones who became worried as they hadn’t heard from us about our 20 week scan that they knew was happening. They knew I didn’t want to see anyone so left magazines, chocolate and other goodies on my front door step and text me to let me know they were there. What an incredibly lucky human I am to have friends like these. ❤

Every night that week I lay there each night, not wanting to cry, wanting to preserve every ounce of fluid inside me, praying that it would find it’s way to the place it was needed the most and stay there, surrounding the baby and keeping him/her safe. Instead of crying I visualised the baby happy and smiling floating around in more fluid than he/she or I could ever imagine.

A week later, we returned to the hospital. We felt hopeful, like some miracle had happened! Our baby had made it further than all the doctors had believed. Once again we found ourselves outside the scan room waiting to be invited in. This time i felt no excitement at all, although nerves as well as hope were present. As I lay down on the bed I imagined once again the baby warm and happy, swimming in the oceans of fluid that would be miraculously discovered where they needed to be. I closed my eyes and said one last silent prayer to anyone who would listen as I squeezed Day’s hand as tight as I could. The scanner touched my stomach I waited for the audible gasps of happiness… I waited and waited some more. They never came. So I opened my eyes to find the same black and white fuzzy picture on the screen that we had seen a week previously. I don’t even know what I felt. Too many emotions to explain all at once, disappointment, anger, hopelessness, heartbreak.

The scan continued, and if it couldn’t possibly get there, the news was even more bleak than before. My waters had gone from one 2cm pocket, to absolutely 0 measurable. This time there was only one kidney visible and it looked to have fluid outside of it, although the baby’s bladder was full.

Just a bit of history repeating, we were off upstairs to maternity again to be seen by our consultant. While we were waiting I was given lunch. I ate it. How, I do not know, but when there is someone else inside you depending on every mouthful you take and every bottle of water you guzzle, you have to! ‘Mr Doom and Gloom’ himself, as he was now known by us, arrived before too long. This time we were told that if what was to be seen on the scan was correct our baby had potters syndrome. He/she was unlikely to survive birth, if they did survive birth he/she would live minutes/hours and the whole time they would be gasping for breath due to their lungs being born dry as due to this condition they wouldn’t be able to produce any more amniotic fluid. We were to be referred to Liverpool in the next week to be seen by specialists. It was likely that I would be offered a termination for medical reasons.

This time I howled.

We both sobbed uncontrollably.

Our baby had been given a death sentence.

We drove home, in silence. Walked upstairs, and for the second time in 8 days retreated to bed 💔

For the second time in 8 days, we got up out of bed, dusted ourselves off and made chicken nuggets and chips for tea for Alfie. All the while feeling those very same feelings we were unable to comprehend the previous week, except this time amplified by a thousand.

Baby’s cute little foot 😊

Pink or blue… 

Boy or girl? Pink or blue? We decided this time to find out the baby’s sex. We hadn’t done with Alfie as we wanted it to be a surprise, but this time we wanted to know. I didn’t want to find out with Alfie, but Day did, so I thought it was only fair that he got to find out this time. To be honest it didn’t really matter, they’d be riding a trials bike anyway!!!

Alfie went off with nanna and granda and I’d arranged to meet them for lunch after we had been for our scan when Day went back to work. Sitting outside the scan room we were so excited, talking about the most important detail, boy or girl. After all, the 12 week scan is the one that tells you everything is going to be fine? Right?
I lay down on the bed, giddy with excitement excited to see our happy baby gliding across the screen. The buzz in the air of the room was palpable.
This was the last moment of my pregnancy that I felt any form of bubbly excitement or excited for our future.

I’ve read this moment described in magazines and stories when something goes wrong at an ultrasound and people get devastating news about their baby, but I always thought it was exaggerated. It wasn’t. The second the scanner touched my tummy I knew something was wrong. The whole atmosphere in the room changed. On the screen barely anything was visible. Black and white squiggly lines but no baby was visible. The sonographer herself was taken aback. We had no idea what was actually wrong, until the lady asked me if I had been leaking my waters. I told her I hadn’t because I didn’t think I had been.

There was still a heartbeat flickering on the screen showing us just how strong that little bean or our ‘pip’ was. I can’t really tell you how we felt, ‘numb’ seems a bit of a cop out really, but that’s the only word I can use. We had no idea what was going on, what this meant for us? Our baby? Our family?

We were ushered upstairs to the maternity unit to wait to be seen by a consultant. At this point I couldn’t do anything, I cried but the tears had no substance whatsoever, it wasn’t the type of crying where you shed some tears and you feel better. It was an empty cry, because at that time, while waiting in limbo we had no idea what this meant. We knew things were bad, but our little fighter still had a beating heart, strong as you like.

When you’re in a situation like this you want to put all your faith in your consultant. You expect them sway into your room with an air of confidence surrounding them. It’s a pregnancy, some people have complications during their pregnancy, but that’s ok, the baby just comes early and they can be looked after in special care until they’re ready to come home. You want them to smile and tell you everything will be just as you wish, that they can fix everything, because that’s what they’re there for. Right?

Wrong.

You do not to hear the words, “waters breaking before 20 weeks rarely have a good outcome. At best your baby will be physically disabled because they will have been unable to move properly for lack of fluid…”
(This was neither here or there for us, it would have no bearing on how much this baby would be loved and cared for.)
“…At worst, you’ll miscarry, most likely over the weekend. So go home and wait, we’ll scan you in a week.”

It’s amazing to think that even though you class yourself as a ‘grown up’ how incredibly naive you can still be.

 

This is the point where I learned that not everything can be fixed. Not everything turns out the way you want it to, and you can do every single things right but things still go wrong. This is the type of life-lesson that knocks the wind right out of your sails. The shocking news that sinks that ship that was happily bobbing along on the waves.

 

 

Featured

Every superhero needs a sidekick… 

Day has been telling me I should write a blog about Arlo to help others. I’d like to thank him for encouraging me to do this.

I feel now I’ve come to the point where emotion doesn’t rule everything, that I am able to function as a human being again, rather than a mass of tears, snot and hormones.

I’m starting with the most difficult. My pregnancy. I feel this is the most important place to start so you have a background of what we have been through. I don’t know why but I find this the most upsetting to talk about. Maybe it’s because I didn’t get to enjoy any of my pregnancy, maybe it’s because I didn’t get to buy all the baby stuff in the last few months, picking up cute outfits, picking my pram, counting down the days till the baby arrives, all the joy and excitement. Waiting for baby so we can celebrate together the new addition to our family, mine and Day’s new baby and Alfie’s new sibling. Maybe it’s because we’d done everything ‘right’ this time. This baby wasn’t to be a surprise, he/she was to be a very much planned for little brother or sister for Alfie (who was a complete surprise, but no less longed for). Maybe because we had planned everything we expected it all to adhere to that plan. Well I don’t think Arlo got that memo…

Age 21 I was diagnosed with polycystic ovaries, I was devastated to be told it was extremely unlikely that I would conceive naturally. However, being young, I sidelined this diagnosis and planned to investigate it further in a few years time, when I was settled and thinking of starting a family. But, much to the surprise and shock of us all, 8 months later I found out I was pregnant with Alfie and already 15 weeks gone! A true miracle! Although shocked, both myself and Day were over the moon. I’d not had to go down the route of IVF, a route a friend of mine was going down at the time I fell pregnant, so I had seen how difficult and heartbreaking it could be. Especially when I announced my pregnancy to her and she congratulated me before going into her office where I heard her sobbing. Although there was great excitement about my pregnancy, there was also worry too, I had been taking a drug for my diabetes that wasn’t licenced in pregnancy and no one knew if it would cause harm to the baby. I had also been on a few nights out, abseiled down a building and ridden every ride at Alton towers!! (This probably explains the fact my child is an adrenaline junky!) Anyway, after all this I had a fairly uneventful pregnancy and Alfie Jack Owen was born weighing an astounding 11lb 1oz and after a short stay in special care was brought home. Happy and healthy! Our first little miracle! 💙

Fast forward a few years, we had decided to be sensible for the first time in our lives and as much as we had both wanted another baby we had decided to wait until we were in a more stable situation before we did. In preparation I went on the insulin pump and I took all the pregnancy supplements in preparation. And before we knew it we were pregnant a second time. ❤️

Day was away the weekend I took the test. So I had to do another one the day he came back. I pulled a bottle of wine of the cupboard and stuck a label on it saying, “I’ll join you in drinking this DECEMBER 2016.” I also put on an apple pip, I was 5 weeks pregnant when I took the test and according to one of the 3 apps I had downloaded the instant I found out that’s how big the baby was at that point. We were both over the moon, especially since we were going to have another baby THIS YEAR!!

We went for a scan at 8 weeks, we were both nervously excited before this one. It was called a ‘viability’ scan. Viability.  (I hate, hate, hate that word, you’ll see why later on.) Anyway, all was well we could see the little blob floating around with a tiny heartbeat flickering on the screen, showing a strong determination. We were assured that we were actually pregnant and that we should come back in 4 weeks for the 12 weeks scan.

We were both really excited for the 12 weeks scan, like giddy excited. I have no idea why. A chance to meet our baby again. Even though it’s through a screen, it’s an amazing chance to bond. Once again, baby was happily floating around. It was amazing to see how much he/she had grown from the first scan and from that apple pip at 5 weeks. Everything was perfect, absolutely no problems or worries at all, so we merrily got on with spreading the news we had been wanting to shout from the rooftops for the last 7 weeks… So we did, with the tag-line

EVERY SUPERHERO NEEDS A SIDEKICK!

Because at that moment, when you are so excited of things to come you don’t even bat an eyelid at the thought something could go wrong. You’re so caught up in that bubble of excitement that nothing can bring you down. We rode in that bubble, talking of baby names, buying baby essentials, dreaming of the future and how we would have a baby just in time for Christmas. 💙That was till our 20 week scan where that bubble was well and truly popped…