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.