Monday, 29 June 2020

32 - 34 Weeks Pregnant - IUGR and Anhydramnios

34 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

It's been a few weeks since I sat down to write a Nugget update, and it has certainly been a busy few weeks to say the least. 

Following on from my last post, I am pleased to say that a new normality is forming (even amongst furloughed life and Covid 19). Leo and I are making plans for the future and despite having some storms to weather over the coming weeks and months, we are so excited to start house hunting and moving on with the next chapter of our lives.

34 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

I am very lucky to have an incredibly supportive family, and if it wasn't for them I would probably still be sat curled up in a ball on the floor and rocking relentlessly backwards and forwards. A big drive for me has been getting moving, putting on my headphones and going out on some rather epic walks just to clear the fog that descends in my mind. 

Endorphins really are the best anti-depressent ever!

Nugget has been breaking more rules over the last few weeks, at 32 weeks I had to take a trip to hospital due to a bleed. It was at this point I realised how under prepared I was, I didn't even have the basics for a hospital bag, and despite making a list weeks ago... I didn't have a clue what I needed.

I called up the triage and overloaded them with information about baby and myself, they told me I needed to come in and get checked over. They told me to bring my hospital bag in case they needed to keep me in, or in case baby was going to make an appearance. 

They asked me who was bringing me in, and I explained that I would be driving myself. The guy seemed shocked and advised me to get dropped off, but I explained that it was fine and this was how I wanted to do it.  

33 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

I started to throw things into a bag and explaining to Leo that he was going to have to stay with Grandma and Grandad while I went over to Worcester to get checked. I explained that I didn't know what was going to happen or what time I would be back, and thankfully he was absolutely fine about it all. 

Leo actually said the most lovely thing to me this week, and anyone who has followed this blog for a time will know that he has always had a favourite blanket. It's something I have always found very endearing about him, over the years I have managed to get my hands on about 5 of these blankets (actually a cot duvet that was part of a cot set from Toys R Us!) on Ebay! 

Leo wants his baby brother to have one of these blankets, he wants me to take one with me to hospital when he is born especially for him. 

This beautiful gesture on Leo's part equally melted and broke my heart all at the same time!

I have found being honest about everything with Leo as it happens the best way to keep him happy with what is happening/going to happen. I threw what I thought I may need into a bag and off we went.

When I arrived at hospital triage was full, so I was taken down to the delivery ward and set up in a room for them to do all their checks on baby.

Everyone was so lovely, I had to explain how complicated the situation was to quite a few different people, and as baby was looking so good on the trace machine, for the first time in my entire pregnancy I was told not to give up hope.

This both floored and confused me further...

Nugget looked nice and strong on the trace machine which was nice to see, but I always find this difficult as I know that the scans paint a very different picture. We were left on there for quite a while which was fine with me. I had been handed a little clicker that I had to press everytime I felt him move. 

32 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

Of course Nugget decided to stay very still, but that wasn't out of the ordinary for him, he has never moved like I remember Leo moving, as he has got bigger the movements have changed. Instead of being a foot or hand to the stomach, it's more of an overall movement. Almost like a swipe as his entire body slowly moves to where he wants to go.

33 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

I have always put this down to the low/no fluid, he's essentially vaccum packed and doesn't have the opportunity to kick or hit out. So Nugget's movements are not so pronounced, which of course is normal for him and what I am used to. 

It is always quite tricky to explain though...

Eventually the on duty consultant came to see me, they checked to see if they could see why or where the bleed had originated (they used a torch and I couldn't help but chuckle!), but it wasn't obvious and as it had been old blood they weren't overly concerned. 

It was with the consultant that I discussed my birth plan and what I wanted to happen, up until this point they were talking about keeping me in overnight for monitoring. When they heard that I was having an un-monitored birth they decided it was ok to send me home again.

Over the next few days I had some on/off bleeding and what I think was a 'show', just before I was off on a 10k walk, as you can see.... I still went!

33 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

I had my next official consultant and scan appointment on the 23rd June where I would be 33 weeks and 2 days pregnant. I could feel Nugget moving around in his fashion so I decided to wait until then to discuss all of this.

The consultant in charge of my case is amazing, I have so much respect for her and all she has done for Nugget and I. The first thing she asked me was 'Are you still feeling him move?' to which I informed her that he was still here and fighting!

Everytime I tell her that he is still with us she looks shocked, he keeps defying all the odds placed on him and breaking all the rules. We discussed my trip to hospital the week prior, how I was with everything else that had been going on behind the scenes (which thankfully was all incredibly positive!) and the scan commenced! 

As always a thorough check of Nugget was carried out, and as always you don't see a lot on the scans due to there being no fluid, but I instantly saw the beating of his little broken heart. It's been months since I saw anything that actually resembled a baby on the screen, but I know he is in there.

As the scan continued I saw her hovering over what I thought could potentially look like a stomach, but as Nugget's stomach had never been seen on a scan in the past...I thought that I was just jumping the gun and that this wouldn't be the case. 

As it happens... My consultant started talking about how she could see what appeared to be fluid in baby boy's stomach!

33 Weeks Pregnant - IUGR Anhydramnios Oligohydramnios

I asked how this could be? 

Where had the fluid come from? 

The consultant looked just as baffled as myself, and she told me that 'he really was a little enigma'. 

That much is certainly true!

Nugget is weighing in at an estimated 2lbs 1oz (absolutely tiny for his gestation), but he has grown. I was then told that it was positive that he was growing, and if it was just the heart condition and Intrauterine Growth Restriction (IUGR) then there could be some hope, but obviously we have the Anhydramnios and small lungs at play in our scenario too... Along with potentially things we don't even know about yet.

There is still zero fluid around baby (Anhydramnios) and he is still breech. My consultant thinks that even though he continues to grow and stay put for now, ultimately when we get to delivering him, this is potentially where we could lose him. 

This prompted a number of questions on my part, as I was so confused on what I needed to include in my hospital bag. 

Packing a hospital bag that didn't really include anything for baby was so foreign to me and I was certain that I was missing essential items..

Did I need to include nappies? Baby grows? 

Anything for baby at all?

It was decided that I should maybe purchase some premature baby clothes, but I got the impression that was more for me than it was for the baby. I figure he will only need clothes that early on if he loses his fight, as if he was in NICU then he wouldn't really require clothes...

As for nappies, it was explained that I wouldn't be able to purchase them small enough for my little fighter.

It looks as though I will still have the Pediatrician at the birth, and ultimately if he is born alive, his fate lies in his hands. He will make the overall decision on whether to intervene or to let nature take it's course...

I have to admit that I have been doubting my decision over whether or not I want steriods for baby before he arrives. It really is a difficult decision and I think that is the one thing that I will keep going over and over in my mind, as I said last time I have decided against having them, but what if this is the wrong decision?

Maybe I will get more clarity from future scans, maybe things could look more positive? Maybe the decision will be taken completely out of my hands and be irrelevant anyway... It really is just a case of waiting and seeing what happens next.

I am hoping that I will be induced should I reach 36/37 weeks, I feel this will allow more control over when and how baby arrives into the world, and I feel the need to control any aspect of what can actually be controlled in a very out of my control situation. 

Sunday, 28 June 2020

Leo Turns NINE

XRocker Adrenaline Game Chair

The year of 2020 meant that Leo was turning 9 years old, and right in the midst of a rather crazy time with Covid 19 thrown into the scenario. 

It's been a busy old year already, one that has been testing for both Leo and myself. 

From March onwards Leo and I were both at home conforming with lockdown and self isolation, and when we next poked our heads outside, Winter had given way to Spring. 

I really cannot begin to sum up that boy of mine, Leo has acted beyond his years on many occasions this year and has had to contend with more than I can ever imagine. Yet he has done so with a huge strength, courage and his Mumma's positivity.

If there is one trait of mine that I hope I can instill in Leo, it's that. 

To always stay positive, keep moving forward and if you do get knocked down, to pick yourself back up again and just keep pushing on. 

I really do feel that 2020 has been a glowing example of this, and no matter the knocks that we have faced as a team, he knows that I am still fiercly championing him on. 

The feeling of pride I feel when I look at the boy I have watched grow up from a tiny newborn baby, into the grown up little man he is today is immense. I am so proud of this little human that I have had a hand in shaping, his compassion and empathy have brought light to days I have felt dark. 

His kindness and love have made me smile when I didn't feel like smiling. 

His charm and witt have had me crying with laughter, and together we have become strong.

With everything that has gone on in the pregnancy and the worries about his baby brother, Leo has been the wind in my sails. He has told me that everything will be ok, and been the strength I needed to get up and keep going. 

Leo's 9th Birthday was one I wanted to really pull out all of the stops for, with everything that has been relentlessly weathering around us, I wanted to present Leo with the ultimate gift. Something I knew that would make him beam from the inside out...

A gift fitting for the incredible boy that I get to call mine.

XRocker Adrenaline Game Chair

The preperations and research started weeks ago, Leo's downtime like many children his age involves a Nintento Switch and a very popular game that I don't understand.... Fortnite. For a long time Leo has wished for his very own game chair, but I have always said that until we purchased our home that we wouldn't be able to make room for one right now...

I decided that if I moved his room around, then I may actually be able to make a decent amount of space that would potentially be ideal for a gaming chair. Of course in typical Laura style, I found the chair that fit the requirements and ordered it long before I actually came to sort Leo's bedroom out!

My brilliant Dad and I built the chair and hid it away in their house until the big day, and then on what turned out to be the hottest day of the year... I began to sort Leo's bedroom out. I moved the bed and re-arranged his bedside tables, and my efforts were rewarded when a very obvious space for a gaming chair appeared. 

I am big on Birthday's, especially Birthday's for little man. I filled his room with the helium balloons that I had chosen for him and spaced them all around his game chair. It was all worth it for his absolutely golden reaction. 

I have been thanked on countless occassions since he recieved it (as have his Grandma and Grandad who very kindly put Leo's birthday money towards it!). 

Seeing that look of pure joy on his face was exactly what I had hoped to achieve, and if there was one boy deserving of such a grand gift, it is my Leo.

9th Birthday

Leo's birthday fell on a Saturday, just as the nice weather ended. Weirdly just like the weather on the day he was born back in 2011. We had a relatively quiet day hiding from the rain, we popped out in the morning to pick up his Birthday cake that I had ordered from a local cake maker (Of course it had to be Chocolate for my Chocolate cake fiend of a child!) and then we came back and made bacon sandwiches!

The rest of the day was spent at Leo's grandparents, my Mum cooked up a big homemade chinese dinner (Leo's favourite!) and then finished up with cake and a brazier fire in the garden.

Leo had the best day and was spoiled rotten from start to finish, just as I had wanted and just as I had planned.

9th Birthday

Day's later Leo is still saying 'Thank You' for his gaming chair and the appreciation is very clear. 

My baby boy is now 9 years old, and we have quite the year ahead.

One that will see us welcoming a baby boy and working through the aftermath as a team, finding and buying our family home, MOVING AGAIN, decorating and getting Leo's bedroom set up exactly the way he wants it and finding our places in the world.

I am so lucky to have this boy by my side and I can't wait for this next chapter with him.

Happy Birthday baby boy!

Wednesday, 10 June 2020

31 Weeks Pregnant

31 Weeks Pregnant - Oligohydramnios

It's been quiet around here, and with good reason. 

Baby boy is still here with us, fighting on as he always has. 

I have had to take some time out, some time to try and rebuild the foundations that have been rocked to their very core. 

My full attention should be focused on Nugget and his impending arrival, but instead I am pondering my future with Leo and the pup. Instead of packing a hospital bag, I have been sitting mortgage appointments and refreshing RightMove hoping that my dream buy (within my new budget may pop up).

At 28 weeks pregnant my fiance left. 

The reasons as to why he left are pretty laughable (and excuses at their finest especially given that I am preganant with our sick baby) but right now all that's important is he walked out on me when I needed him the most.

I will never forgive him for that. 

The days and weeks that followed did so in a blur of tears and confusion. I felt resent that my hope for the baby had been diminished and I felt like I was in limbo. 

31 Weeks Pregnant - Oligohydramnios

The feeling of no longer wanting to be pregnant set in, the reality of Nugget surviving as a single parent scared me more than I could have imagined. What if he did indeed continue to defy all the odd's and expectations that had been placed upon him?

What if he needed permenant care that would stop me from working?   

I cast my mind back to the 20 week fetal medicine appointment, would I have made a very different choice had I known all of the facts about the life that I thought was so stable and secure? Sadly I believe that yes, yes I would have. 

I made my decision to carry on with the pregnancy because I was in a commited and stable relationship. Suddenly I was pregnant with a sick baby and on my own.

Here I was at 28 weeks pregnant all alone, when all I really needed was to be pulled close and told that everything was going to be ok. Of course the one person who could have provided that safety blanket, and should have wrapped it around me without hesitation had left me carrying our baby and already started his new life.

At 28 weeks pregnant my friend reached out and asked if I would like some bump photos taken. It had been something I was considering as I didn't know how long I would be pregnant for, and given the prognosis, any memories I could make of this time would be greatly appreciated. 

I made a concious decision on that day, there was a choice between a White and a Black dress. I decided ahead of time that the Black dress was very fitting for this particular shoot. The Black dress represented the expected outcome of my pregnancy and also the outcome of my failed relationship. 

Had the situation been different the White dress would have been the obvious choice, but right now this Black dress represents a lot of what is and has been going on in my life.

So I shook off the hurt and glammed myself up for a bump shoot, and I have to say that I am so glad that I did. I will treasure these photos forever, and will most certainly be having some prints framed for our new home!

31 Weeks Pregnant - Oligohydramnios

On the 2nd June I was back at Worcester Hospital for a follow up scan, Nugget had reached yet another milestone that some had believed was out of reach. 

I thought by this point I would be able to stay composed enough to explain that Luke wouldn't be at this appointment or any subsequent ones. As soon as I was asked if he was joining us, the tears fell uncontrollably. By this point I wasn't sure why I was crying, was it sadness? Anger? Frustration? A combination of every emotion I had been feeling? 

As always my consultant went above and beyond, I could tell she wanted to wrap me up into the world's biggest hug, but Covid 19 and all of her PPE wear prevented more than her holding my hand and gently rubbing it.

I lay down on the same bed I had all of those times before, only this time I didn't have any expectations, I had already been pondering what I wanted to do, and all that was left was for me to tell my consultant. 

I recognised bits of baby popping into view, but as always it was clear as soon as the doppler hit my belly that baby boy still had no amniotic fluid. By this point it was classed as complete Anhydramnios.

Nugget's heart was inspected again, it was noted that it looked to be larger in his chest cavity than it should be, and this was likely down to his lungs being so small that they hadn't developed. 

Eventually Nugget was measured, which is always difficult when there is no fluid, and it was estimated that he was around 1.5lbs. This means that he had only put on around 4oz since my last scan at 26 weeks.

In typical Nugget style, he had now turned breech again! At my last scan he was head down and essentially ready for birth... But even without fluid little Nugget liked to keep me on my toes.

Baby boy is so very small for his gestation, the prognosis is that he may pass away before my next scan in a couple of weeks, during delivery or shortly after birth (the same as always).

31 Weeks Pregnant - Oligohydramnios

I explained to my consultant that given my new circumstances, I no longer wanted to pursue steroids or medical intervention. I asked if there was a way I could be induced now... It was explained that the only way to get baby out at this stage would be via a c-section. She believed that if a c-section was performed he would be born alive and I may get some time with him...

I want to have Nugget naturally, whether that means being induced over the next couple of months... or if he decides to come on his own. All I want to do is meet him, hold him and let him know how much I love him.

 This was all discussed with my consultant, I told her I felt like the fight had been knocked out of me, that I hated feeling like I had given up on my baby. It was at this point that she took my hand again and told me that all she had ever seen me do, was fight for my baby boy. 

This made me cry all over again.

So it was decided, they will scan me again in a few weeks. I don't know whether this will prompt them to bring baby on or if they will just let me keep going. I have been warned that the likelyhood of a still birth is high.

When the time comes the birth won't be monitored, baby boy's heartbeat won't be checked. What will be will be. 

I have been advised to write a birth plan so that I don't have to answer lot's of questions while I labour. Sitting down and writing a birth plan for a baby who is not expected to survive is so foreign. 

Do you pack nappies? Babygrows? 

Putting pen to paper and saying that you want your baby to be born and handed straight to you knowing what that will mean, not asking the medical professionals to help or intervene...

After the scan I had my bloods checked again as I had missed my 28 week midwife appointment with all of the madness going on. Usually this would be the end of my hospital jaunt, but this time I was ushered into another room to speak with their crisis team.

My consultant had asked them to have a chat with me and support me if needed. The midwife walked into the room and asked how I was. I told her I was fine, but as soon as she said 'That's not what i've been told...' the whole sorry tale started spilling out of my mouth for the second time that day.

The poor midwife looked like she was about to cry with me. We talked through all of the options I wanted for the birth and she agreed that it was important for me to do what was best for me, not to worry about other people.

31 Weeks Pregnant - Oligohydramnios

I have decided that I will labour and birth alone, this now has to be a private time for me to meet that beauiful boy of mine as it really does feel that this entire pregnancy has been something I have fought alone. 

I want to take all my photos, record footage of him and take casts of his hands and feet.

I need to be selfish.

I want to tell Nugget that I am sorry for losing my fight, that I am sorry for not being a better Mummy, that I am sorry his Daddy didn't have any fight for any of us at all. 

When I first saw those two faint blue lines on that pregnancy test back in November, I was so full of excitement. I imagined this little baby being welcomed into our secure family fold. I imagined Leo meeting his baby brother for the first time, getting all teary as he snuggled him in close for a big brother hug and snapping that tender moment that would sit proudly on display.

I still have the dream that Leo will get to hold his baby brother. I still want that for him, and that photograph will be one that we treasure forever.

It's been 3 weeks since I took this journey on solo. 

I have come a long way in that short space of time. I have started getting all of my ducks in a row, I can sleep at night again, the tummy knots have gone away revealing a nice calm feeling that I didn't think would ever return.

Somewhere in those 3 weeks I realised that Leo and I deserved so much more than what we have been given. The lies and deciet, the abdonment, the continued lies. 

We have a difficult few months to weather, but I am a firm believer that you have to travel difficult roads to get to beautiful destinations. I am lucky to have a great support network of family and friends, people who check in everyday to make sure that we are ok.

Once the next few months have passed and I have met that beautiful baby boy of mine, the only way forward will be onwards and upwards. I will turn this situation around, make the most of the time we get with Nugget and then do everything within my power to provide the very best life for Leo. 

We will weather this storm and then we will pick ourselves up and live our lives.

Friday, 15 May 2020

27 Weeks Pregnant

27 Weeks Pregnant

These last weeks have passed in a blur, the lack of sleep and tummy knots of hurt and confusion have only added to the overwhelming feeling of not knowing what to do or how to move forward. 

I have had to silence all the noise and try to carve a path forward, take a new direction that I didn't want to take and try to re-write what my future is going to look like. 

Of course I am 27 weeks pregnant now, and I am kicking myself. If I had known what I know now at my 20 week fetal medicine appointment I can't honestly say I wouldn't have accepted the offer of a termination. I feel so guilty saying that, incredibly so. 

I hate that this thought has even crossed my mind, I hate that I have been made to feel that way subconciously. This week I have felt terrified at either prospect of having a baby, terrified he may pass away, and equally terrified that he will survive and his quality of life will be severely impacted. 

I took all scenarios into consideration when I made that decision several weeks ago, but when your life changes over night, you do have to wonder how you got to where you now are. Of course I would never change my decision now, I am invested and will see this through no matter what happens. I need to summon strength from within myself that I don't even know exists, but it really is the only way.

I'm busy working on drowning out the noise, trying to focus on my next steps and what that involves. 

I am almost in my 3rd trimester with so much un-certainty hanging in the air, a time I should have all my eggs in one basket and know that I am supported and loved. 

Baby boy has been wiggling and I am pretty certain he has gone from head down to breech again at points during this week, and now judging by his movements it would seem he has reverted back to his head down. 

For someone with no fluid he sure has a way of getting around. 

You can feel him grinding and bumping around in there, it's such a weird feeling when you can feel his body rising up and down. I don't re-call this feeling with Leo at all, granted it was 9 years ago now. 

27 Weeks Pregnant - Anhydramnios

 I have accepted that due to the low fluid and having a small baby, I probably won't ever have what I would call a 'real' pregnancy bump. Just another aspect of a normal pregnancy that I have been robbed of. My tummy is only hard where baby is, when he moves from the space he has occupied my tummy goes soft again.

I get jealous when I look to other pregnant ladies and see their blossiming bumps, bumps that signal healthy babies growing within, but at the same time I know I have to keep going and that my journey is unique.

There are no appointments this week, I won't see my consultant again until 30 weeks now. I do have to book my 28 week midwife appointment though and I know I am going to have to come clean with how I am feeling, because I am so worried about my mental health right now, although I do feel like I am starting to accept this new direction.

By filtering out people's actions and not filling my head with black clouds, I am focusing on myself, baby and Leo. I am focusing on keeping a clear head so that I can shut my eyes and sleep at night, and although those tummy knots keep rearing their ugly head deep down within me, for the most part I can silence them.

It's like everybody says, it's all about the baby steps. The getting up, the showing up, the amazing family and friends helping set your compass so that you get where you need to go. I keep repeating 'This too shall pass' and 'Difficult roads often lead to beautiful destinations' to myself, a little mantra of hope that hopefully puts me onto the path that I am supposed to be on.

It's been a crap week, I am not going to lie. I am not going to pretend that everything is ok when it is so far from ok. I have faith that one way or another a new normal will come out of all of this, that I will find my way out of this maze and be happy again. One day.

Tuesday, 5 May 2020

26 Weeks Pregnant - Yet Another Scan

26 Weeks Pregnant - Anhydramnios

As 26 weeks pregnant rolled around I had so many other things on my mind. Things that I shouldn't have even had to consider or comprehend, and the one person that should have been my biggest supporter throughout all of this could not have been further away.

This however is a story for another day, a story I am not quite ready to tell at this moment in time.

It is for these reaosns that I have not sat down at the computer and written up my 26 week post.

As I cast my mind back to the week I hit the 26 week milestone, I was worried because I had somehow lost my pregnancy notes (this all ties up with the above), and I had contacted my midwife who of course did not text me back (a reoccuring pattern I have noticed), so I contacted my other midwife, a lady who I haven't had any appointmnets with, but she reassured me that it would all be ok, she could re-print most of the scan notes and rebuild my notes for me. 

I was so thankful to her, I cried down the phone and she told me to book an appointment for 28 weeks, come to see them at the surgery and just do all of the normal pregnancy milestones. She praised me for my decisions, but at that moment in time I wasn't sure anything I had done or was doing was the right way forward.

It was now Monday 4th May, my midwife called me first thing in the morning and we re-filled all of my notes as mine had still not materialised. She told me to pop by the surgery an hour later and she would bring the new notes out to me. True to her word, she delivered my new notes to me and wished me all the best for the scan.

 It was time to head off to my scan, I was worried that I hadn't felt baby move quite so much and before I set off to the hospital I lay on the bed just jiggling my tummy to see if Nugget would respond with a kick or movement. 

Of course he did, but it wasn't as strong as it usually was and was up higher than usual. Happy that he had given me a little reassuring movement I got in my car and made my way back over to Worcester hospital. 

The date and time for my scan had been written in my lost notes, thankfully I had taken a picture of it so I had it to hand. I realised that it said Tuesday 4th May 2020 at 2pm, when the 4th was actually a Monday... I very almost called up to clarify the day, but naively assumed that the date would be correct and they had just put the wrong day...

It turns out I was a day early for my ultrasound, so I had to head home and go back again the following day. 

Eventually I was lay back on the bed in the consultants office, she asked me how I had been and I told her that everything was fine, but the reality was my world was being pulled out from beneath me.

The ultrasound commenced and she confirmed once again that there was no fluid, that there was a high chance I could lose my baby in between appointments and that she believes although the Amniocentisis came back clear, that there was a high chance of some kind of syndrome running alongside the heart condition and lack of fluid. 

As always Nugget's bladder was empty and there was nothig in his stomach. 

Baby was still measuring 3 weeks behind and the growth line is starting to plataue, however he had now reached the estimated fetal weight of 1lb 10z (He was 12oz at the previous scan at 23 weeks), which meant he had put on 5oz in that time frame - He should have been more along the lines of 1.68lbs... But despite slow growth and having Intrauterine Growth Restriction slapped into my notes, he had grown and reached another mini milestone in my eyes, the 1lb mark!

Another little surprise was that despite having no measurable fluid, baby boy had rotated into the head down position where as at the previous scan he had been breech. This was a milestone that I hadn't even considered a possibility. 

The different kind of movements suddenly made sense, it was because he had changed his position!

I wasn't offered a termination at this appointment after making my position on this very clear. I pushed for steriods and she told me that if I made it to 30 weeks when my next consultant appointmnet was to happen, then we could most certainly discuss the possibility of steriods for Nugget's lungs.

This gave me some hope, it meant that there was a chance.

I had my blood pressure and urine checked at this appointment, both of which were absolutely fine. 

Another appointment under the belt, with an update on baby boy and then a wide abyss of time between appointmnets. 

I feel awful right now that I should be focusing all my attention on baby boy, but my mind is all over the place and being pulled in so many different directions. I don't feel strong, I don't know what to do or how to make myself feel better and I don't know which outcome would favour my position best right now. 

As always I will paint a smile on my face and keep putting one foot in front of the other.

Friday, 1 May 2020

25 weeks pregnant

25 weeks pregnant - Anhydramnios Oligohydramnios

25 weeks was a milestone week for Nugget's movements, just like they were with Leo. Up until this week I had to be lay down in order to feel him moving around. I found that at 25+3 I could feel him moving when I was sitting up, and a a day or so later even when I was standing!

 There was one moment where baby boy kicked so hard into my belly button that I actually jumped, and I have even felt movemnts as high up as my belly button. This is the highest movement I have experienced so far.

When I woke up one morning this week I became aware that I could feel Nugget all down my right hand side, almost like he had turned and was now lenthways down my side opposed to laying across my lower tummy beneath my belly button.

It's been so nice having so much movement from him, reassuring me that he is doing ok in there despite everything that is going on. 

This week there were again no appointmnets, we have our next scan next week to see how baby boy is getting on. I have accepted that the fluid around him probably wont magically materialise, and I have accepted that these appointments will never be filled with the words that mean a miracle has happened. 

These appointments are always going to be about preparing me for the worst case scenario, they are always going to be about preparing me for the death of my unborn baby. I have made the decision that I will set mini goals for these appointmnets and if he reaches those markers I will be happy. 

All I really want is for him to keep on growing, putting on size and surviving. For this next scan I would love for him to hit the 1lb mark, and just know that his heart continues to beat strongly. I know that the fluid is gone for a reason... what that reason is no body can tell me, but it is gone. 

Keeping the hope alive has become so important to me, I don't think I could keep going if I was certain he woulnd't make it at the end. I have read so many stories where the outcome looked so bleak, but the babies pulled through in the end. 

I know that whatever happens my little guy is going to have to keep fighting even after the pregnancy, we know he has the heart condition Tetralogy of Fallot, but there could be other factors we need to consider should he defy all the odds and make it into this world. 

One thing that I have been unsually happy about is this, regardless of what happens now. No matter what happens. My baby boy get's a birth certificate, he's a real little person and whether or not I get to bring him home or not... He existed, he has a name and he matters.

My bump is looking rounder this week, more like a baby bump and less like chub. I would love for my tummy to fully pop and to actually look pregnant like I did with Leo. Due to the low fluid and growing a small baby, I am not suffering with back ache or having trouble getting to sleep each night. 

In a weird way it is another aspect of being pregnant that I have been robbed of.
I have found speaking out about what is going on in my pregancy refreshing. Back in February we announced that we were expecting, and instead of having to have individual conversations with people about the turn the pregnancy was actually taking, I decided to be quite vocal in what was happening. 

I have done this on my blog and on my personal social media, it has meant that I can update everyone in one go. I don't need to have one to one chat's with everyone I know and get emotional, I can think about what I want to say and how I want to say it before I put it out there.

People have been incredibly supportive, some have even gone as far as saying how brave it is. I don't consider it brave, if anything it's a way of addressing everyone in one go to spare myself. At the same time though I have been able to reach ladies who are going through a similar journey, and we have been able to guide each other on this journey into the unknown. 

I have been caught off guard a few times where people have congratulated me, and I have looked blankly at them wondering what the kind regards are for... then I realise they are congratulating my pregnancy. I should just say thank you, but I can't help but look at them with confused eyes.

It's another week under the belt, another day closer to the 26 week scan that I was told we may not make... But I have high hopes that we will!


Wednesday, 22 April 2020

24 Weeks Pregnant - We Made it to Viability!

24 weeks pregnant - Oligohydramnios Anhydramnios

This is a milestone week for Nugget and I, a week that I wasn’t sure that we would ever get to. After being told over and over again that my baby may face his demise in what should be the safest place for him, there was always a question mark over whether we would indeed reach viability.

But here we are, 24 weeks pregnant. 

Somehow and some way we made it!

It's a somewhat bittersweet milestone, because I have been told that it probably doesn't really matter how far I get in this pregnancy, that the outcome will most likely see me leaving the hospital with empy arms and a broken heart.

I choose to look toward the path of hope though, I of course listen to everything the doctors and specialists tell me.. But equeally I don't think anyone really thought we would make it as far as we have, and we here we are!

I feel Nugget moving daily now, usually only when I am lay down, that is when his movements are at their strongest. It’s crazy that I have been feeling him move for a whole month now.

Since last weeks scan and more doom and gloom news, I have picked myself up off the sofa where I have pretty much spent the last month drinking water and hoping that the rest may do some good... and decided to get out and enjoy the beautiful weather with Leo through the means of daily exercise.

We have been walking the dog, merely walking ourselves and even bike riding.

My mum told me to ‘be careful’ and I couldn’t help but ask her ‘why?’ - When you have been told that there is no hope, careful doesn’t really enter the equation. Of course I had full intention of being careful, but you can’t help but ponder the thought as to why. 

It’s been a quiet week, and to be honest it’s these kind of weeks that you can almost lull yourself into a false sense of security and pretend that everything is ok. I have found myself doing it after each and every appointmnet, it's a cycle.

I get delivered the bad news, I come home and mourn a baby who is still very much alive. I feel sorry for myself. I take to Google looking for stories of hope, and then I find a way to build myself back up again, clinging to the smallest chance of hope.

When you have been given bad news and have no appointments on the calander, you have no one telling you that your baby is going to die. You can feel him moving and kicking away inside, you can even see your stomach rise and fall as he does so. You can almost make yourself believe that you WILL be bringing your baby home and that everything is and will be ok. 

I’m almost certain baby boy had hiccups this week, I can’t be certain.... and how can a baby with no fluid actually have hiccups? 

I have to admit that apart from the movements, it’s pretty hard to believe that I am actually pregnant and growing a baby. I think when you are dealt bad news, part of you switches off to protect you, an almost armour shoots up and around you to help you distance yourself from the potential of a broken heart.

I lie there in the evenings (he’s most active around midnight) and I just feel him bop away, both my hand's draped over my growing tummy. I refuse sleep while he is wiggling and jiggling around, it almost feels a crime to miss those little moments when you are never sure how long you will be able to enjoy them for.

I lie there in the morning and refuse to get out of bed until I have felt those familiar movements I have grown so fond of. Once I know he is ok I can start my day with Leo.

I’m in good spirits, I still have hope. My tummy is growing (all be it smaller than the average pregant ladies tummy) so I know baby boy has to be growing too. I know that at the next scan he is still going to be smaller, but he isn’t the first baby in history to experience inuterine growth restriction and he won’t be the last. 

While his heart is beating I refuse to give up hope, I have to keep that hope burning otherwise I am just going to lose my mind. 

Tuesday, 14 April 2020

23 Weeks Pregnant

We’re now 1 week away from viability at 23 weeks pregnant. In 7 days at 24 weeks, if this baby boy made an appearance, the medical world could intervene and try to save him. 

Thankfully I can’t see him arriving in the next week or so, even if the dream I had on Saturday night told me otherwise... I seem to be dreaming about my baby boy so much recently, and they are always my favourite dreams. 

The kind of dream that I never want to wake up from, on this occasion baby boy arrived in the world early again. As he has done in pretty much every dream I’ve ever had about him. This time I was lay in bed, I was holding my belly like I always do when I’m in bed, as this is when I feel his movement the most. Nugget pushed his little face firmly up against my belly and you could see the details of his nose and where his eyes would be. 

Then he pulled his body away and suddenly I knew he was on his way. In the dream this prompted 2 strong contractions, and then Nugget was in my arms. For a premature baby he was so strong, he was breathing on his own and it became apparent that his lungs were better than anyone could have anticipated (no pulmonary hypoplasia in sight).

As the dream developed... it became evident that Nugget wasn’t your average baby. Within a few hours he was walking, and then running... he was more like a toddler now than your typical newborn premature baby. 

Then I woke up... 

On Tuesday 14th April I made my way back over to Worcester Royal hospital, I had been feeling so elated since my consultant appointment. They were letting me fight for my baby boy, a section had been discussed and even steroids for Nugget’s lungs. 

I was now 23 weeks and 2 days pregnant, I didn’t think that we would be delivered anymore bad news, but by this point I should expect it I guess.

I sat and waited for my name to be called, the hospital was really quiet due to the Covid 19 lockdown and only the patients being allowed to attend appointments. Once again I was on my own, Luke has stayed at home with Leo, and I went to see baby boy.

I was soon called into the room, the very same room I had been told that Nugget was pretty certain to have Trisomy 18 - Edwards syndrome

The scan started right away, the familiar silence ensued as my consultant concentrated and tried to veranda her way around the low fluid. Every so often she would relay the measurements she had taken to the supporting midwife. 

I learned that baby had put on 4oz since my last scan, which although still had baby measuring around 3 weeks behind, he was growing! 

After the scan concluded they delivered more bad news. Baby now had no measurable pocket of fluid, the Oligiohydramnios (low amniotic fluid) was now being referred to Anhydramnios (low to no amniotic fluid).

This was just the starting point for the bad news. I was now advised against a section, against fetal monitoring and it was once again confirmed that my baby was not going to make it in this world.

I was offered another termination.

I said no I would not end my baby’s life. 

I felt pretty defeated in all honesty, blow after blow I have been dealt in this pregnancy. Each time I am thrown down I do dust myself off and rise again. 

I’m not sure if it’s defiance, gut instinct or if I just need to keep holding on to that glimmer of hope, just hoping that Nugget can and will defy the odds and get to come and meet us. 

When the termination was offered the tears fell, I could see the pitty in the consultants eyes, a lady I really to appreciate and admire. She didn’t like telling me these things anymore than I liked hearing them. 

It was decided that I would labour naturally and forgo the section, we will intermittently check Nugget’s heart rate but regardless of any fetal distress, we won’t be going for an emergency section.

I feel confident that I can labour, but I am aware that Nugget May continue to be breech and I have no idea of when or how I will go into labour.

The consultant told me that Nugget could pass away between appointments, my next one being just under 3 weeks away on May 4th. I got the impression that she would be really surprised if Nugget made it that far...

She told me that he could pass away during the birth or immediately after, that his lungs just cannot develop with no fluid. 

I had a chat with the peadatrician who is at the births of babies who need specialist help. He concurred with what my consultant had just told me, but I asked him to be present at the birth anyway. He told me that he would, but the decision on how to proceed would be determined once he was here. 

If there was no hope I was told they would pass me my baby boy so I could share whatever time we had together, and if there is by some chance a miracle, they would intervene.

I left feeling like I had been hit by a truck, but inside I could feel my defiant flame burning still. Inside I knew my baby had a heartbeat, and I knew that I was going to keep marching forward regardless of the odds that I would lose him.

Thursday, 9 April 2020

22 weeks pregnant - Fighting for life

22 weeks pregnant - Oligohydramnios

The weeks are ticking by, I can't decide if they feel like they are going quite quickly, or if they are dragging due to how slow life has become with Covid-19 and the lockdown that has been imposed on Britain.

I have now been self isolating for 3 weeks, and I am now 22 weeks pregnant. 

I am 2 weeks from viability. 

There are 14 days between being able to fight for life and just having to let him go.

I have accepted that I am on a different path in this pregnancy, there is un-certainty but for me, only one clear way forward, and that is to carry on.

I am not buying things for my baby, in many respects I am just hoping to wake up each morning and still feel his movements, to still hear his heart booming over the doppler. There will be no new baby clothes, no next to me crib and no coming home outfit.

At least..... Not any time soon.

When I woke up on Sunday morning I could feel Nugget popping his little limbs up, hard enough for me to feel the effort with my hand. I immedietly called Leo into my room. He has been waiting weeks to feel his baby brother kicking for himself.

Leo gently placed his hand on my tummy and within a few seconds, he had a few bops to the hand from his baby brother. 

The first contact between two siblings.  

Leo thought it was amazing, and I was so happy to know that he got that experience. There was a time that I didn't think any of us would get to feel his movements, that the straight jacket he was contained within would prevent any movements what so ever, but little Nugget had other ideas and is letting us all know that he is getting stronger.

I've had some dreams during this week, the first one ended not long before I called Leo in to feel his baby brother wiggling around. I was at my parents, and Nugget had decided to come early. I was holding him in my arms and he was just like your typical new born. I recall changing his nappy and getting him dressed, we hadn't made it to the hospital, but he seemed to be doing amazingly...

The second dream was a few days later, I found myself back at Birmingham Women's Hospital, only this time I seemed to be having an appointment in the basement where the higher tech sonogrophy machines were apparently based... I was in a long line of pregnant women who were all waiting to see their little one's. 

Eventually it was my turn, and I was told that my fluid levels were now absolutely fine and that baby could most certainly have a chance at life now. 

Then I woke up....

I've worked out that my levels must have been lower since around 18 weeks, it was classed at the lower end of normal during the scan I had at Worcester, but then classed as below normal at the 18 week Amniocentisis.

Today I had my first consultant appointment, this was luckily with the lovely consultant I had met at my last Worcester scan. It was at the local hospital in my town which was ideal, especially since this was the first time I had taken myself out anywhere in over 3 weeks. I was surprised to see how busy the nearby streets were, but the hospital itself was eeirly quiet.

I had given this appointment so much thought, I had wondered how it would go, whether my requests for what happened for the remainder of my pregnancy would have them class me as barking mad and unreasonable. I already knew how I wanted to proceed and I was anxious that once my notes hit the table, I would be faced with the doom and gloom once again, instead of clutching to that small glimmer of hope.

I walked into the hospital, the reception desk was closed with no one manning it. I had no idea where I needed to go.

I wandered up and down the corridor and saw a group of ladies at one end, I asked if they had any idea where I needed to go, and then I recognised one of the faces. Nicky!

My midwife with Leo in my first pregnancy, the lady who saw me through my miscarriage in July, and the same lady who has been my absolute saviour in this pregnancy. I swore I wouldn't cry at this appointment, but as soon as I saw Nicky I felt insanely emotional.

This golden women got me into fetal medicine so quickly, she's provided additional scans, valuable advice at the end of the phone, and even got me appointments when I have had more worrying feedback from scans, to try and find some clarity in this emotional rollercoaster of a pregnancy.

I owe a lot to this lady, and considering that she is not my assigned midwife in this pregnancy, and actually in a completely different role... I have had more contact and help from this one lady than I have either of my actual midwives.

For the first time since my booking in appointmnet I had my urine tested for water infections and what not, my blood pressure taken and I heard Nugget's heartbeart for the first time other than on an ultrasound (and on my home doppler of course).

I had to chuckle when they exclaimed how clear my pee sample was, I guess from all this water I have been drinking for Nugget I am now super hydrated! Thankfully the sample was clear of any nasties that might put more of a concern over my pregnancy and baby boy.

I filled Nicky in on the Amniocentisis results, and then I was called into my appointmnet with the consultant. Nicky had already told her that I was concerned that my choices might be deemed on the crazy side, but both of these wonderful ladies were completely reassuring.

Not once throughout either of these meetings did anyone speak of termination or ending the pregnancy, and for this I was so grateful. 

It wasn't a very long appointment as I am actually due to go back to Worcester Hospital and the Fetal Medicine team (with this very consultant) on Tuesday 14th April. I chimed in that I already knew pretty much the direction I wanted this to go in. I put forward my wish for medical intervention, for a c-section and steriods for Nugget's lungs before birth.

I laid bare my understanding, and let her know that despite all of this I want to give my baby boy a chance at life.

It wasn't the fight of a conversation I had built myself up for. It was a simple discussion, one that reassured me that I could decide how we play this out. It didn't have to just be a care package, it didn't have to be a natural birth that distressed Nugget.

It could be as much or as little medical intervention as I decided.

I was advised that I would be scanned and baby re-evaluated the following week, following this appointment we could make a plan. I guess I need to think about the gestation of baby when he makes his arrival, and what intervention I would want and when.

Would I want a c-section at 24 weeks? When it's put like that, when he is literally right on th cusp of viability when completly healthy babies have the biggest of fights before them.... Would I really want to put my baby boy through that?

No one knows how far I will go in this pregnany, I think it is pretty safe to say that I won't go full term and I have accepted along the way that the best case scenario for my little man is to be born prematurely.

Ideally I want him to get to 30 weeks, and potentially a minimum of 26 weeks.

30 weeks would take us to next month on May 31st. It is so strange to think that he could make his appearance in the world that soon.

Today's appointment was more positive than I could have invisioned. I feel like I am in really good hands, and I am re-assured that it won't just be me fighting for his life. I will have a team of people who are also fighting for him and listening to my wishes, all the while with them considering my personal needs and health.

It is nice to feel that we have a direction again, the last few weeks since the final fetal medicine appointmnet and Tetralogy of Fallot diagnosis, I have felt like we had just been written off, brushed under the carpet. In the notes the consultant made today, she said 'Mum keen to give baby a chance, but also realises that this is gestation dependant'.

That is more positive than the outright fetal demise I was pretty much promised at my last appointmnent. It's not clairty, but it's a chance.

I just need to hope that he is gaining weight and growing, all be it if he is smaller than your average baby. He just needs to be getting bigger and following his own little growth plan.

That wraps my 22 week update, I would say it has been another good week.

For me everyday that his heartbeats means we have conquered another day.

Wednesday, 1 April 2020

21 weeks pregnant - Oligohydramnios & Tetralogy of Fallot

21 weeks pregnant - Oligohydramnios & Tetralogy of Fallot

I’ve made it to 21 weeks pregnant, and this week has been a much quieter week than the last one. There have been no hospital appointments, no scans and no bad news. 

You could say I’ve been able to lull myself into a false sense of security. My bump has popped more, and I’m feeling baby boy more frequently, and boy is that the best feeling ever. 

I’ve found that Nugget is moving around quite a bit, some days he’s really low down, like right back down in my pubic bone, and then when I lay down (usually at night) I will start to feel him bobbing around. When I wake up in the morning he has been by my belly button, and I feel him wiggling and turning around. 

There have been a few days early this week where I didn’t feel him for a few days, I could still find his heartbeat on the Doppler, but I didn’t feel him. Fast forward to Tuesday night, I lay down in bed and after a little while I could feel him working his way up my tummy until all of his body was by my belly button.

The way he positioned himself made my tummy hard to the touch, and you could feel the bulk of a little baby beneath my skin. 

It was the strangest, most incredible feeling. The baby boy who at one time not so many weeks ago, I thought I would never feel move from within me. Yet after the news last week that he probably won’t make it... I began to feel those very first movements!

Luke has even felt him kicking away now during one of Nugget’s midnight shape throwing! 

I was around 25 weeks with Leo when I first felt him move, so despite Nugget having Oligohydramnios (low amniotic fluid), a poorly heart and potential bilateral talipes (club foot) I can already feel him, and I know he’s telling me to keep on fighting for him and not to give up. 

I feel defiant and hopeful at 21 weeks pregnant, I know what the experts have told me. I know that they know what they are talking about, but at the same time there is something within me that tells me that this could all turn out ok. 

Blind hope into the unknown.

This morning when I woke up my tummy stayed harder, baby boy had been wiggling around before I got up, and while he moves I place both hands on my tummy and stay put until the movement stops.

Last night I lay there for about an hour just holding my tummy as I felt him letting me know that he was there, that he was ok. When he moves it makes me want to stay awake and just have those moments with him, because the uncertainty and prognosis paints a bleak picture that means these sorts of moments need to be seized with both hands.

It's still too early for what it deemed regular movements from my little 21 weeker, but I still worry when I don't feel him move. I wonder if the fluid has reduced more so that he can't move now, that maybe it all got too much and he had to forefit his fight.

I am certain this baby boy of mine is a fighter, he has been fighting his entire short life. He's survived the increased risk of miscarriage due to the high fluid measurement on his neck. He's survived the Amniocentisis, he's survived his poorly heart and potentially his poorly kidneys. He's surviving everyday in low amniotic fluid and as far as im concenerned he's fighting every day for his life.

This week it has been a quiet week at home with Leo, we have been doing our school work from 9am through to 1pm, and then he gets the afternoon to do what he wants. I use this time to lay around and rest in the hope that this combined with lot's of fluids will help me build or maintain the amniotic fluid that we have.

We’ve been busy with his spellings and working on the scrapbook I bought him not long after we got back from New York. 

Next week I have my consultant appointment on the 9th April. I know that this is most likely going to bring more grave news, but I feel ready to face it now. I’ll be sticking to my guns and telling her that I will be continuing my pregnancy.

21 weeks pregnant - Oligohydramnios & Tetralogy of Fallot
I will use this time to enquire about the steroids that they can give to babies to strengthen their lungs, and if we make it to 24 weeks, this is exactly what I want for Nugget. 

We are just under 3 weeks off viability right now, and I know I can’t look into the future and see how this ends, but I can’t see him coming any time soon.

I have 2 goals right now. My first is to reach 24 weeks, and then following that 30 weeks. I know they said it doesn’t matter how far I get, the outlook is bleak, but I’ve read some miracle stories of babies born after Oligohydramnios, and despite spending time in Special care, they weathered the challenges and surpassed all expectations placed on them.

It can happen.

Yes we have the added issue of Nugget’s heart diagnosis of Tetralogy of Fallot, but the first issue we have to face will be to see how his lungs really are. 

Right now I’m just trying to enjoy being pregnant, to feel his movements, to feel him physically getting stronger. This means he’s growing, this means he’s trying to get to meet us. 

I’m still drinking as much water as possible, adding in orange juice and coconut water for a good mix. I’m eating poached eggs daily in the hope the extra protein will help him get big and strong!

Right now I’m doing all I can, I don’t know if it will work, but it’s nice to think that all of this may not be in vein. 

It’s nice to think that despite how horrendous this pregnancy has been in certain respects, there may just be a silver lining.