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.