Louis - For My Little Warrior

Two faint pink lines announced your existence

Over the next 8 months you fought with persistence

Each week dealt a new blow

But despite it all, you continued to grow

I held you so tightly and gave you every chance

From deep inside, I felt you start to dance

On the day that they told me your heart was broken

You willed me on when no words needed to be spoken

You broke all the rules and I lived in hope

Even when they said your lungs wouldn’t be able to cope

I wished for a miracle and that you would keep on going

You defied expectations even when your growth was slowing

At 37 weeks you decided it was your time

Arriving bottom first, I willed you to be fine

You never let out a cry or opened your eyes

You had fought so hard and I didn’t want any goodbyes

It should have been warm cosy cuddles 

And milk drunk snuggles

But in the end you left as quickly as you came 

And life will never ever be the same 

Little Louis the miracle was your courageous fight 

It was meeting you in the thick of night

The miracle was spending 2 sweet hours breathing you in

The miracle was that little dimple on your chin

The miracle was the journey we went on together 

It was all the storms that we managed to weather

The miracle was getting to tell you your name

It was that little lock of blonde hair that I have been able to frame

The miracle was every single heartbeat

My little army guy never admitted defeat 

I’m so sorry that my body pieced you together in a way, 

that made it impossible for you to stay.

Louis you taught me so much in such a short time

You taught me to stand still and appreciate the moment

You taught me to have hope in the darkest of days

You taught me to keep fighting no matter the prognosis 

You taught me things I couldn’t put into words if I tried

Louis, I will carry your fight, 

I will carry your lessons and I will carry you for the rest of my life.

Sleep tight baby boy, until we meet again

 

I currently have a Facebook Fundraiser running in honour of little Louis 

for a charity called Aching Arms. 

 Aching Arms is a charity who support parent's like myself, 

who don't get to bring their baby home with them.

They offer support to bereaved parents through the means 

of talking to a trained befriender, and they also provide 

Aching Arms Bear's to bereaved families. 

While I was in hospital I was gifted my own Aching Arms Bear 

in the name of a baby boy called Freddie. 

I knew as soon as I received my bear that I 

wanted to raise some funds in Louis's name, 

and donate bear's to families who walked 

in my heartbreaking footsteps in the future...

I started the fundraiser with the aim of raising £150.00 to donate, 

at the time of writing this we are sitting at £161.00! 

Any donations will be going directly to Aching Arms 

and will go towards Aching Arm's Bear's in Louis's name <3

 Donation Page

 

Louis Christopher - A Birth Story

Back in November when I first saw the faintest of second lines on a pregnancy test, I had no idea what the coming months were going to throw at me. As I lay in bed the other night I almost managed to convince myself that 2020 had just been one big bad dream, that Covid 19 had never really taken place (because let's face it... It does seem so very far fetched!), and that my pregnancy progressed without a single hitch...

There have been times during this pregnancy that it felt like the world stopped, just so my life could fall apart.

I have come a long way in 10 weeks, my mindet has become clearer and I managed to make peace with what may come to pass.

On Tuesday July 21st 2020, I went along to what I half expected to be my last scan and consultation appointment. I had woke to find that I had a bleed during the night, so I was glad to be heading off to have a check up.

As always the scan didn't really tell us much due to the low/no fluid, but as I had now reached 37 weeks pregnant. I was considered at term, a point in my pregnancy that no one ever really expected us to get too... I had been pushing for a potential induction from 37 weeks, but due to the bleed and how far gone I was, my consultant decided to examine me and see if she could perform a stretch and sweep.

I was told that I was already 1cm dilated and was so favourable that she had been able to touch Nugget's bottom! Nugget was of course still breech, but as far as breech birth's go, he was the good kind of breech. This meant that his bottom was firmly engaged and ready to go, just like the head would be in a normal delivery.

I wasn't overly surprised that I was already starting to dilate in one respect, I had wondered if the bleeding was a show, and it was pretty much confirmed during this appointment (Although later on I disovered that Nugget's placenta could have been starting to come away!)

After the scan I met up with my bereavement midwife Trudy. Trudy has been absolutely wonderful and given what may happen after Nugget arrives, Trudy offered to show me around the bereavement suite in case the worst does come about...

The bereavement suite was like a hotel room, it had a fridge stocked with sandwiches, cheese and biscuits and there was even ice cream in the freezer. It had doors that opened up to an outdoor garden space, and a private bathroom. 

We then walked through some double doors and into a delivery room. It was decided that I would labour and deliver in an actual delivery room as opposed to the bereavement suite, and then depending on what happened... Potentially move to the bereavement room after the birth.

It was nice to see where we would be and have a plan of action.

I had the stretch and sweep around 11:30am and then I made my way to pick Leo up. We went and met Leo's Aunt and Uncle at a local farm shop for brunch, and I told them that I thought I may be in early labour.

We decided that after a bite to eat we would head out on a nice long walk to try and get things moving along, I was hoping to be able to have a spontenous labour... If I didn't have Nugget by Friday, my midwife was coming out to perform another stretch and sweep, if that didn't work I was due to be induced on Monday 27th July 2020 (A whole month after Leo's birthday!).

 

I was pretty certain that I was starting to have niggles, and following the stretch and sweep I was losing more of the plug... I didn't want to jinx it but I had a feeling that I was going into spontenous labour!

At just before 16:00 on Tuesday 21st, I headed out on a 11k walk to hopefully really escalate things.

By the time I arrived at my parents house for dinner just after 18:00, I was confident that the contractions were most certainly happening. 

I am really lucky with how I feel contractions, they aren't painful. They are just not comfortable, my body seems to respond well to pregnancy, labour and delivery (just ashame that poor Nugget has had such a devastating prognosis). 

I did have to chuckle when my Mum told me what I was feeling was Braxton Hicks, I knew they weren't as I have never felt Braxton Hicks, it was then that I decided to download a contraction timer and start tracking how long the contractions were coming and how long they were lasting. 

Leo and I decided that we were going to have a movie evening, so I decided to pop to the shop and stock up on some snacks. I had a feeling I probably wouldn't be going to bed if things were going to go the way they went with Leo...

I strolled around Lidl with my contractions and wondered what might happen if I suddenly went into full blown labour. I had a chuckle when the friendly shop assistant realised I was actually in labour and out picking up snacks.

Leo and I came home and popped a film on, I hopped onto my birthing ball so I could bounce up and down and hopefully encourage Nugget along. My snack of choice was eating ice lollies like they were going out of fashion. Leo was wonderful and completely understood what was going on, and what may be about to happen.

I was quite happy bouncing on my ball through each of the contractions, I was timing them as I went and everytime I got up for another ice lolly, Leo would cheekily steal the ball to have a go himself. I text my sister in law a screenshot of the contractions, they were happening on average every 3 minutes and lasting for 30 seconds. 

I didn't think this fell into the criteria of 'GET TO HOSPITAL ASAP' but my sister in law thought that I should call and let them know, as she thought Nugget might have plans to hit the eject button... So given the nature of our pretty unique situation, I did ring up the triage number on my notes. 

I spoke to a midwife just after 23:00 and explained how I was definetly having regular contractions, and I knew things were definetly progressing (despite how I was talking and holding myself), and that I thought I probably should come in to be seen due to the underlying issues...Especially since when I got in with Leo I was already 9 and a half cm (They told me not to come in as I was talking through the contractions!)

I had planned on driving myself but my second brother's girlfriend Carla had very kindly offered to take me over to Worcester hospital, my brother was coming to sit with Leo and the dog. After I had taken the dog out for a pee, showered and double checked my hospital bag (which I had finally packed and managed to keep the snack stash topped up on!), we made our way over to the hospital.

I joked that at least my water's wouldn't be going in Carla's car, and kept timing my contractions on the car ride over. We arrived at the hospital just after midnight, Carla asked me what I wanted her to do, did I want her to come with me and stay while I laboured, or did I want her to go home? 

I had said all along over the last 10 weeks that when the time came for Nugget to make his appearance, I would do it on my own. As Carla had very kindly brought me over, I thought it would be nice for her to stay, but I did warn her that this wasn't going to be your typical labour and delivery... And as she is yet to have a baby, it would probably be best not to base any future pregnancy's on what she may see...

Due to Covid I first had to be confirmed to be in established labour, and then it would be cleared for Carla to come in. I plodded over to the triage and ran into the midwife that I had spoken to on the phone, they decided that it would be best for me to be checked out on the labour and delivery ward.

I was handed over to Kate who was going to be my midwife that night. I found I was in the same delivery suite that I had been shown earlier that morning. I hadn't anticipated being back quite so quickly!

Kate was lovely and I soon had a cup of tea in my hand. Everything was set up and then it was decided that we should see how I was dilating. I had guessed that I was probably about 4cm by this point, and Kate soon confirmed this! 

It was discovered that Nugget had a tiny pocket of fluid around him, I asked if it was enough to make any difference to his lungs... But sadly I was told that it wasn't.

We had already discussed my birthing plan and what that meant. I had opted for an un-monitored birth as I didn't want to be told during the actual labour if Nugget hadn't made it, I wanted to get the hard part over and done with and then have chance to hold my baby.

I could feel that the contractions were getting stronger, but I could still maintain a conversation. Kate said that she had been surprised anything was actually happening due to how I was holding a conversation and not screaming the place down. 

I remember asking 'How long do you think it will take to be fully dilated' and Kate responding, 'maybe a few hours?' So I paced around, sat on the loo and paced some more. The contractions were certainly progressing but I had given up timing them by this point.

Kate said that she was going to give me some time with Carla, the one instruction that I was given was 'give me some time to get back in if you think something is happening'. Which of course I dutifully promised to do. 

I was getting so warm, I asked Carla to whack the air conditioning all the way down. She looked like she was freezing, but I felt like I was on fire. I was missing the birthing pool and just how easy that made everything with Leo, but I knew that it sadly was not an option with little Nugget.

I spent most of my time just sat on the loo, and then suddenly I felt like I probably shouldn't sit there anymore... I plodded out of the toilet and told Carla to press the buzzer because the baby was coming and I didn't have any control...

I had been instructed that when the time came, the best position for me to be in for a breech birth, would be on my back. I knew I was going to struggle with being on my back, because although the contractions are ok when I am standing (or sat on the loo), I really struggle with sitting and laying down...I think this is because of the pressure.

So as I reached the bed, I threw myself onto all fours and knew that I had now lost any and all control. Thankfully Kate made it back into the room and just managed to get her gloves on as Nugget bombed into the world bum first. 

I can quite honestly say that I didn't push, he just arrived. And he arrived fast, around 45 minutes after I asked how long the actual labour may potentially take...

In the end I had only a few puffs on the gas and air, before I decided that I didn't like it and ended up just forgoing pain relief.

Louis Christopher was born at 1:30am exactly weighing a tiny 3lbs 5oz.

Louis was born alive and in his membranes, despite the worry being that he wouldn't survive a natural birth. 

Louis was born quietly and never let out a cry.

 I remember asking 'Is he alive? Did he make it?' I was told that he was alive but his heart rate was slow.

There was a little worry that I may be losing a little more blood than they would have liked, but it was later said to me that the placenta might have been starting to abrupt. This could have lead to a very different type of labour and delivery. It is possible that given a few more days.... Weeks... That the placanta could have abrupted and Louis's life support be turned off while he was still in utero.

The moment Louis arrived, the contractions stopped and I was suddenly freezing.

I knew that if Louis was handed straight to me that medical intervention wasn't going to be pursued, and once the pediatrician entered the room (part of the reason I was supposed to give them as much time as possible, was so that the pediatrician could be outside and ready to come in! But Louis had other plans!) it was quickly decided that little Louis was too poorly and I was told that he was going to be handed straight to me.

I knew exactly what this meant.

I was still on all fours at this point, so Louis was passed back up through my legs. I just kept telling him how sorry I was, over and over again. He looked just like Leo, he had a beautiful little face and little button nose, he was gorgeous.

I suddenly noticed that his leg seemed to be in a funny position, I asked if that was because of the low fluid, and it was explained to me that it was a common injury from a breech birth. Louis had disclocated his hip and his leg was actually up over his broken heart. 

Both of Louis's feet had been affected by the low fluid, and he had what they call Club Foot or Bilateral Talipes. 

I stayed in the position I had given birth in snuggling my little fighter and drinking him in, unsure just how much time I would get with him. I was asked if I would like to be the one to cut the cord, but I think I was in shock at just how fast things had escalated. So I watched as Louis life support for the last 8 and a bit months was cut away. 

It was decided that due to a fibroid in my uterus that it would be best for me to have the injection in my leg to bring the placenta on, as this carried less risk. In my hyped up state, I was certain the placenta looked just like a steak!

Louis was put into the outfit I had brought in for him to wear, It was a preemie outfit with little blue teddy bears on it. It was made to fit baby's who weighed between 1.5lbs and 3.5lbs. 

I wrapped him up in Leo's favourite blanket and just held him. I was so scared to move, so scared to hurt him, so scared he may be in pain from his hip and leg.

Louis never ever cried, and he never ever opened up his eyes.

He had fought all these months, and he had fought all the way to be in my arms. 

I just stared at him, and wished I could make him better. 

 

Carla had been amazing, she had rubbed my back and been there for the whole labour and very quick birth of Louis. Then she rang my brother and decided to go and pick Leo up in the deep thick of night so that he could hopefully meet his baby brother in time...

I was given some time on my own with Louis, I said so much to him, but I don't really recall what I said, I whispered to him and the labour play list rumbled away in the background. I wanted to take so many videos of him, so many photos, but I was so scared to move. 

I don't remember what I said to him, I know I told him I loved him over and over. I stroked his face and felt his warmth... It was like time had stood still, but it was actually running away.

Leo arrived and met Louis, and somewhere in that meeting, I touched Louis's little cheek and realised that he had started to go cool...

I knew that my little fighter baby had gone to sleep forever, and he wasn't going to wake back up again. 

Weirdly I didn't cry, the adrenaline was still buzzing round my body. I held Louis until Carla, Chris and Leo left and then Kate took Louis over to the table for the pediatrician to check his heart rate. I already knew he was gone, but Louis's little broken heart was confirmed to have stopped at around 3am.

Louis lived for 2 whole hours, we both fought so hard to meet each other. 

It wasn't the ending that I wanted of course, but it was an ending that I had been mentally prepared for. An ending that I think on a subconcious level I knew was going to come to pass.

I had some full on deja vu moments in the hours and days since Louis threw himself into the world. One of these instances was when I was sat in the bath in the delivery suite, not long after little Louis had left, it was a feeling of complete familiarity that washed over me and consumed me. Something that I felt I had dreamed at some point, or perhaps even lived. 

It was just like some prophecy was coming true, that perhaps I always knew I was going to get to meet Louis, but sadly keeping him was not on the cards.

I wished so hard for Louis to keep breaking the rules and for a miracle to keep him safe and here with me...

It turns out that a miracle did happen, and that miracle was his couragous fight and surpassing all the milestones that I was told he would not. The miracle was him making each and every appointment, the miracle was us having a sponteneous labour and Louis actually surviving the birth. 

If this was the way it had to be, then I am so glad that things worked out the way that they did. Louis made it all the way to his Mumma's waiting arms, and he spent 2 hours wrapped up in love and warmth, before his closed eyes remained closed and my beautiful fighter went off to sleep.

I am so proud of my little warrior baby. 

I will love him forever and I will carry each and every lesson he taught me for the rest of my life.

It has been a busy week in the time since Louis left and I am currently in the process of planning his funeral which takes place on Friday 7th August - 2 days before his due date, and a day before my birthday.

I have an acceptance of what happened because the whole pregnancy shaped me for what was going to happen, but my heart is truly broken and part of me has died with him. 

Keeping busy is my only way forward right now, I will update on the rest of last week and this coming week in a seperate post, but I just wanted to let everyone who has willed him on, prayed for him and lived this with me, know that he made it all the way into my arms <3

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. 

 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.

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.

25 weeks pregnant

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!

 

22 weeks pregnant - Fighting for life

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.

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.