Louis' Funeral - The One Where We Said Goodbye

 I remember reaching viability in my pregnancy with Louis after being told that we most likely wouldn't get there far. It felt like we had reached a tremendous milestone and that perhaps there was real hope at the end of this dark tunnel we had been shooting through. For me it meant that there was a chance at life for my baby boy, but it also meant that if he did succumb to eternal sleep, that at least we could give him a funeral. 

Inevitably we did have to say goodbye to Louis after his arrival at 37 weeks. 

In the weeks following Louis' birth, instead of nursing him in the thick of night and watching his little face dance with gassy smiles, I planned his funeral. 

I sat writing quite a lot during this time, poems that at the time I thought were just for me as I tried to make sense of all that had happened, but ultimately ended up sharing very publicly in the program for Louis' funeral and later had read out during the service. 

I poured my heart and soul into those pieces, sitting at the breakfast bar in the flat alone just letting words flow down onto the notes document before me. 

I had never organised a funeral before and didn't have a clue what I was doing. I had a wonderful funeral director who really took me under his wing. He was a man that I had known through my job over the years and was a real treasure during those days and weeks. After we had dropped Louis off with him, he let me know that I could just pop by and see him whenever I wanted to, and I did do that quite a few times in the time running up to the funeral. 

I remember being asked to pick out a coffin for Louis, a coffin. 

Not a Moses basket or cot. 

A coffin. 

Funerals for babies don't usually cost you anything and somehow it is all taken care of for you, the coffin we chose was included, had we wanted anything different then we would have had to pay something toward it, but this little coffin was what I would have chosen regardless.

As soon as we had chosen the coffin, this is what Louis stayed within while at the funeral directors. He looked very much at peace and the lady who worked there told me that she would give him squishes for me when I wasn't there. The idea of him getting love and cuddles in my absence put my heart at ease.

I had opted for a cremation for Louis and a non religious service. I wanted this day to be all about the journey that we had gone on together over the last 9 months. My words were more fitting than anything that could have been pulled from the bible. I wanted it to be personal.

The funeral had been booked for the 7th August 2020 at 10am.

The day before my 31st Birthday. 

I had asked everyone to bring a sunflower and wear bright colours. No black. 

I had found my Louis dress, a white summer dress covered in sunflowers.

We were still in the midst of the covid lockdown and although funerals were happening again now they were limited to 30 people. This just felt crazy to me, I knew there was a long list of people who wanted to come along to say their first hello's and final goodbyes to my little baby boy who didn't get to stay.

I remember one of the ladies who worked there clocking that it was a babies funeral and abolishing the 30 person rule. I was incredibly thankful for that gesture.

The minister who had performed Louis' naming ceremony at the hospital had very kindly offered to take the service for me. This felt like exactly the right thing to do, he had been there in the immediate hours following Louis' arrival and had got me through that very first day. 

On the day of the funeral the heat wave was persisting, it was an absolutely beautiful day. Not how you would expect the weather to be. We made our way back to the funeral directors and saw Louis in the tiny white casket. He looked at peace, and I took the opportunity to give him one final squeeze that had to last for the rest of my days. 

We got back into the car with Louis, and with him in his casket on my lap we made our way to the Vale Crematorium a short 20 minute drive away. When we pulled up there were already people congregating outside as the sun beat down upon them. 

There were easily more than 30 people there, from family members to the midwives, people who had been following our story and hoping for a miracle. 

They were all stood there clutching sunflowers.

The day its self has been left blurry in my mind as I remember back, I recall saying hello to people and walking in to Eric Claptons 'Tears in Heaven'. I can't remember who carried the casket now and placed Louis at the front on the stand. I remember getting to my seat and being to afraid to cast my eyes back behind me, so I just sat there facing forward staring at Louis' coffin. 

The minister delivered the service exactly as I had wished he would. I couldn't bring myself to stand up and face anyone and asked the minister to read out my words, which just happened to be the poems I had put together. The service it's self was made up of poems, my own writing, songs and a second naming ceremony.

There were a number of pieces of music that I needed to be within the service.

J J Heller - Always

Coby Grant - Winter Bear

I made a short video documenting the journey that Louis and I had travelled together. His life had begun many months before, he had grown within me and defied all exceptions that had been placed upon him. I wanted to show that. 

The song this was set to was J J Heller's 'Missing Piece'.

The poems that I wrote for the service are live on the blog

Still a Big Brother

Louis

There wasn't a dry eye in the house that day. 

At some point during the service everyone was invited up to Louis' side to place their sunflowers over his casket. I know I got up and laid mine upon him, but I don't recall if I was first, last or somewhere in between. 

By the end my baby boy was completely covered in sunflowers. 

Then the service concluded.

The curtain enveloped around, and we all walked back outside in the summer sun. 

Louis was now gone. 

There would be no more cuddles, simply picking him up and feeling his weight in my arms. His face emblazoned in my minds eye but now only physically visible in the photos I had managed to take. Louis was now physically gone. 

We didn't hold a wake, some of my friends all went off to the pub to raise a toast to Louis. 

I tip toed off with my immediate family and went out for lunch and a much needed gin and tonic. 

The next day was my birthday, but I really didn't feel like celebrating. 

32 - 34 Weeks Pregnant - IUGR and Anhydramnios

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.

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.  

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. 

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.

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!

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!

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. 

26 Weeks Pregnant - Yet Another Scan

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), I contacted my midwife who 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.

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.

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. 

The 20 Week Scan & FULL Amniocentisis Results

The 20 week scan is usually something you cannot wait to experience. To see how much your baby has grown in the weeks following the dating scan, but as mine rolled around I was anything but excited. 

I was actually really anxious, and with good reason.

Those that have been following my pregnancy will know that it’s all been a bit of an emotional rollercoaster. A high Nuchal translucency test revealed 4.7mm of fluid on the back of our babies neck at 10 weeks, we then had a low risk NIPT (Harmony Test) for the three trisomies and began to try and relax and enjoy the pregnancy. Then at a private gender scan the rug was pulled from beneath our feet and we landed flat on our backs, when the sonogropher found a number of ‘differences’ in our baby. 

That threw us back into the waiting arms of fetal medicine, and we discovered that on top of the structural concerns for our little baby, we also had the worry of Oligohydramnios... Also known as low amniotic fluid. 

The 20 week Scan day arrived and was set Thursday 19th March.

Today.

I sat in the local hospital waiting area with Luke and Leo, wondering if they would both be allowed in... Leo was off school as we have been self isolating due to the latest government advice surrounding Covid 19 and pregnant ladies, and lets face it... I don't need anything else to go wrong at this stage.

When my name was called, they advised that Luke would have to stay outside with Leo, so I went in alone. Luke hasn’t seen baby since the last time he was able to take me to Birmingham Women’s hospital weeks and weeks ago, which thinking back was the 12 week Fetal Medicine Appointment.

I couldn’t get my head around how Leo was allowed in to the fetal medicine appointment and even witness the Amniocentisis... but not here. 

I had spent the week from my echo scan to my 20 week scan guzzling water and peeing like a race horse. I hoped and had everything crossed that when the Doppler hit my stomach at my 20 week scan, we would see the baby more clearly because the fluid was returning. 

Of course, that was not the case.

The fluid was now very low, so low that the sonogropher couldn’t measure the deepest pool because there wasn’t one. I believe that there is still some fluid around baby, but the sac is almost comparable to a straight jacket. Baby boy cannot really move and that would explain why I have not felt him, and at this stage I have resigned myself to the fact that I probably will never feel him wiggle from within me.

I had explained to the lady scanning me how this was so far from your average pregnancy, and she confirmed that she had already read my notes and didn’t know how much help she would be to me. I was already aware that this would be the case, so it wasn’t a shock.

All I really wanted and needed from this appointment was confirmation on the amniotic fluid. This lady did her darnedest though, she tried to look at baby in as much detail as she possibly could, and it’s always interesting to hear how people describe the anomalies that they are seeing.

When she looked in baby boy's head she said that the cerebellum ‘looked small but normal’ - I had been told in previous appointments that it was ‘abnormal and small’ but not that it was abnormal just due to its size. This confirmed that it was the right shape, but small.... but considering baby is well below the plotted expectancy for 19+5 isn’t that to be half expected in some way, shape or form?

At just under 20 weeks my little baby boy is measuring around 17 weeks, around 2 weeks below where he should be. Low amniotic fluid does restrict growth, so I would guess that is also to be expected.

Baby boy’s hands were up by his face, it was almost a comfort to know that he could soothe himself with his little hands. This was the first scan since 14 weeks that I had seen the baby’s profile and at least he seems to have resigned from his breech position. To obtain the image you can see at the top of this post the sonogropher had to bring the doppler all the way over to the left side of my stomach, as simple being above baby didn't generate much that looked like a baby at all.

The sonogropher printed me some scans and told me that she couldn’t get a frontal view of baby’s face to look and see if the baby was effected by cleft palete, but in the next breath said ‘but given everything else would it be the end of the world if the baby was born with cleft palete?’

Of course the answer to this was no, it wouldn’t be the end of the world. What I wouldn’t do to bring this little man into the world and give him a fighting chance. 

This pretty much concluded the scan, I was shown back to the waiting area while the report was drawn up. When she brought it out a few moments later she wished me luck, but I could see the sorrowful look in her eyes, she didn’t think that this baby would make it even if she didn't say it.

I have to admit that seeing that low level of fluid had me on the same page. How could a baby grow and develop with such a little amount of fluid? Especially during this crucial time of the lungs developing. 

I explained everything to Luke, and Leo for that matter. We have been very open and honest about all that is going on as ultimately Leo needs to be as prepared as possible for what and most likely will happen. 

We arrived home and I resumed my fetal position on the couch with a large glass of water. I flicked through Netflix undecided on what to watch, then my phone rang. No Caller ID could only be the Women’s Hospital, and this could mean the full array results from my Amniocentisis were back from the lab. 

The Fetal Medicine Midwife Sarah confirmed that she did have my results. I was told that they were ALL CLEAR, there were no chromosome abnormalities with our baby boy. Atleast not anything that they test for.

This should have made me happy, put a big smile on my face and given me hope in my heart, but seeing my little baby on today’s scan with no where to move or turn... there was still a problem. A problem that meant I probably won’t get my baby boy at the end of this long, long road.

A problem that we didn't even see coming, despite all of the other mountains we have had to climb. After passing each test that has come our way, baby boy is still having to climb mountains, but those mountains require him to be in his safe bubble of amniotic fluid, fluid that keeps decreasing, and stealing hope.

I filled Sarah in on the latest scan, I asked if my baby would be in any pain. I was told that he wouldn’t be and that we would go through ‘all the options’ on Tuesday at my next echocardiogram with the consultants. 

I think I can hazard a guess at what the next options may present to me. I’ve been thinking about it all long and hard, and I am just waiting for them to tell me or at least present the option of termination.

 I don’t have it in me to end my baby boys life. 

I’ve already decided that I will stay pregnant as long as I can, I will say no to any offer of termination, I will let my body decide what happens, and I will keep fighting for that little heartbeat even though everything seems so bleak.
 
I am 20 weeks on Sunday - Mother’s Day, it’s just to cruel to let us get half way through this pregnancy after everything that we have been through and done for us to just exhaust all options now. 

I remember writing in a previous post that my biggest milestone was to get to 20 weeks, I’m almost there. Baby boy still has a strong heartbeat and I know that we’re still 4 whole weeks off being ‘viable’ and I most likely won’t get that far... but I have to try. I have to try knowing that even if we did get to 24 weeks that he could be born and we would most likely lose him anyway, but I have to try.

I can't be the one resposible for stopping his little heart beating. I can't be the one to ultimately decide to end his life, and I wont. 

I’m weirdly ok about it all, I am prepared for the worst. It won't be some big shock if anything does happen.

I’ve somehow accepted this, but I can’t give up and I won’t give up. 

Luke has said that he will support whatever decision I have made, and it might sound crazy but I’ve already made my mind up. 

One way or another I’m seeing this through for my baby boy. 

19 Weeks Pregnant: Low Amniotic Fluid

 I completely neglected to do a pregnancy update last week, and I have to admit that it was because it was such a hectic week. Luke had been away to Italy skiing - I say skiing.. He got 1 day in after they arrived before the resort closed and they were popped onto emergency flights back to the UK. Of course at that point all of Italy was under self isolation measures.. So I had to pack a suitcase and get out before he arrived back so that Leo and I didn't have to self isolate too...

It was not fun sofa hopping and not being able to get comfortable. In fact I slept on a very old mattress one of the nights and suddenly in the middle of the night I began to suffer from Vertigo. I haven't had Vertigo in 2 years, and I can't say I enjoyed it. The following day (Wednesday) was my first day back at work, since we returned from Venice last month (Just as Covid 19 was taking hold...) I had to stay away from work just in case. At that point there wasn't any advice to self isolate, and Leo was welcomed back to school.

This all changed the day of my Amniocentisis when I got a call at school telling me that even though a fortnight had passed since our return... Leo had to stay away from school. None of us had any symptoms so the thought of that just seemed crazy. Leo ended up coming with us to Birmingham, and what a superstar he was. He was in the room while the Amniocentisis was performed and it didn't phase him one bit.

This was the Monday, and I had until the Wednesday before I was due back at work. Of course it was on the Tuesday that my Vertigo appeard, so on my first day back in the office (with Leo in tow) I found myself throwing up in the toilets! I am pleased to report that this has now eased off now, and you may have seen that we have had our first set of Amniocentisis results in!
 
I’ve spent the back end of my 18th week of pregnancy drinking water and coconut water like a lady possessed. I did ask the nurses at my echocardiogram scan if there was anything I could do to maybe increase the production of amniotic fluid, and they said there wasn’t anything I could do.

I had a little google and keeping super hydrated can help in some cases to produce more amniotic fluid. I have been drinking lots of water and added coconut water into my daily drinking regime to try and see if it can make any difference.

At the end of the day it can’t hurt. 

I haven’t felt baby moving at all, or at least I don’t think I have... but that could be down to the low amniotic fluid. It would be amazing to see if I can increase this at all by Thursday; which will be my 20 week scan (a week early) - I’m half dreading it, because I already know what they will or will not see... but at the same time I want to see if the fluid levels have increased. 

There have been a few mornings since 18 weeks where I have woken up and the right side of my stomach is really hard. I can push down and I can feel something, but I don’t know what it is... I did it once and that something did move, but I’m not convinced it’s baby., but at the same time I am not sure what else it could have been? At 19 weeks baby is still super duper low down, which I am told can be normal.

I really thought that by this stage of pregnancy I would be able to get really excited, but unfortunately that is not the case. I am pregnant, there is a heartbeat... but there is so much doubt over how this will all end. I find myself checking Nugget's heartbeat multiple times a day just to hear the reassuring beat of his little heart.

We know we’re growing a boy (I say growing because I can’t bring myself to say having, because having means bringing home and keeping), I can’t look at baby clothes, I can’t get all of Leo’s clothes out of the loft ready to sort through and wash. I can’t buy anything like the bedside crib, in many ways I don’t actually feel pregnant.

I feel like I’ve been robbed of many of the things pregnant ladies take for granted in a healthy pregnancy, I didn’t get to do our gender reveal, I haven’t been able to excitedly shop and I haven’t been able to glow when people congratulate me on our newest addition.

This week I was caught off guard as I discussed the current Corona Virus situation at the school gate when another Mum innocently said 'I don't mean to be rude... But are you expecting'. It should have been so simple to answer, but instead of saying 'Yes' straight away, I wasn't really sure what to say. I am pregnant, but whether there will be a baby at the end of it all... I cannot say.

I’m staying positive and taking each day as it comes, I’m sitting around and resting more, drinking more and hoping that this helps. 

Right now I feel that the best case scenario out of all this will be delivering a premature baby, and then allowing the medical professionals to do their very best. I don’t think we would really know what we are dealing with until birth as these scans don’t really provide a comprehensive view.

I’m trying to have blind faith that we get our boy at the end of all this. That we get to tell our tale, with a happy ending that goes against all the odds. 

Through it all though I just feel like I have to keep holding on and fighting for this little life. People say I’m brave and strong, but I am just doing what I feel is best, and sometimes even that is guess work.

It is hard to keep the flame of hope alive when every appointment brings more bad news, but while baby is growing and his heart is still beating... I will continue to fight for him.

Today is Wednesday, and as of today we are in self isolation to shield ourselves from the crazy outside world and Covid 19. Work have been amazing and sought advice from HR, the instruction is that I go home and self isolate for 12 weeks. Before I left work I managed to almost cry twice, anyone would think I had lost my job. I am just super lucky to work for such a good team of people, so I will be using the time to stay at home, rest and of course home school Leo.

Due to my need to self isolate now, Leo is off school before the official closure on Friday, I had to go and pick him up early and ended up crying at the head teacher and SEN teacher due to all of the worries surrounding the pregnancy, and I guess feeling emotional about leaving work for a potential 3 months. The crazy thing is so much can happen in 12 weeks, It will be June, I could be 31 weeks pregnant by then.... I could have had the baby by then?

I could have lost my baby by then....

Self  isolation is the current plan, and that is what I am doing. I can't help feeling like a fraud, I am pregnant right now... But who knows what the next 12 weeks will bring? What we will find out? What decisions I will have to make?

 Thursday is my equivelant to a 20 week scan, I will be 19+5 and I think I am more nervous for this particular scan than I am about the Fetal Medicine appointments. The difference is at this appointment they will expect to see your typical baby, completely healthy. I don't know what we will see tomorrow....

Fetal Medicine called at 19:30 this evening and when I answered I was shaking head to foot. The full array result is not expected until at least Monday, but seeing that No Caller ID flashing on the screen set my heard racing. It was Sarah the Fetal Medicine Midwife, she's been speaking to the consultants to try and get me seen again as there was nothing booked in. I am really thankful for this, especially with everything that is going on right now, so I should hopefully have a more detailed echocardiogram scan next Tuesday 24th March - Back to Birmingham we go!

Week 19 has been a long update, if you have made it this far thank you.

Hopefully I will have more (happy, positive) news tomorrow.

But for now it is more waiting in this already uncertain pregnany.