Lost and empty

My little baby is gone and this time, nature didn't take it's course but I did it. I stopped her living and then had to give birth to her. How sad is that?

The procedure wasn't so bad. I could have managed my pain relief better but I know for next time if it happens again and I hope more than anything it doesn't.

I tell people I am managing and I am but inside, I just feel so desolate and lonely. It isn't the same as with Ellie, but much much lonelier. People identify when you have a baby so far on but with this, people don't want to know, think its not a real baby (pretty much formed at 13 weeks so it is) or think you shouldn't care because its so early and that is the most hurtful thing of all. And then today, I passed a sizeable chunk of placenta and was by myself and frightened (there is still some left but its on its way out) and I know, as people say, it can be normal but when I feel so shit anyway, its not helpful. I have more children dead than alive right now and that is so awful. If it wasn't for Theo, I am not sure I would get up in the mornings.

My friends have been a godsend and I have learned more this pregnancy who I can lean on, which is one silver lining. That and that I am controlling my health anxiety really well, considering Friday's procedure and even today, at the prospect of surgery, I did cry but did not freak out. 

I guess one step at a time 

Bye bye baby Forrest

Third time unlucky. It has been a bit of a shock to say the least. However, it hasn't been as nightmarish as I imagined. It is horrible to be losing a wanted baby, but I am not so far that I 'loved' this baby or had any real attachment. I don't believe people love their baby at this stage. They love the idea of having a baby but until you feel that baby kick and things move into that realm, you don't really know they are there, except for symptoms. Some women go for a scan only to find their baby has died without them knowing at this early stage. It is, therefore, easier for me to shut down. As much as that baby is still inside of me, in my mind it has died and baby Forrest, while always in my thoughts and still an important loss to me, is a baby that was never meant to be.

In two days, I will return to the RVI to take the tablet that shuts down the hormones to fuel the pregnancy. This bit holds no fear for me. I am not scared to do the right thing for this baby, sparing them a life of suffering and pain like Ellie. She will look after them in fairyland and have a sibling to play with. What I am scared of is getting it out. I always said that was the scariest bit for me and it holds true. I don't want a surgical termination as it can cause complications and I am terrified of general anaesthetic. That said, the medical termination isn't particularly appealing. To endure a mini labour when I have no pain threshold is a massive source of anxiety. The joy is, I am pretty sure I can get morphine and gas and air so I imagine after my first c section, I will survive (for which I did not have morphine but only gas and air). I am also worried about the particular moment when it all leaves me, but a few friends, while honest have been reassuring and they have survived and moved on. It seems to be like a heavy period by all accounts.

Lee and I have decided after recovery (physical) to aim for an almost immediate pregnancy again. I could take 3 weeks or 3 months, who knows but really, we will be ok once I get past the horrible procedure. Yes, it could happen again next time and even the time after that but we just have to believe that 75% has to win out at some point in the next 3 attempts. Perhaps if it is bad next time we will have a slightly longer break, I don't know but for now, we will just surge on. I have also decided to stay at the RVI for any future birth. Foetal medicine is a horrible place to be, nobody wants to be there with their complicated pregnancies but even so, I feel safe there, and well cared for and the hospital is amazing. When I think of having this termination at our local hospital, where I booked in, I feel sick and it's not the hospital because my care with Theo there was amazing. When I have been through A and E they are great too but it doesn't feel like 'home' the way my antenatal care does in Newcastle. There is even going to be a brand new hospital on the doorstep and it doesn't tempt me at all.

Theo has been the saviour in all this. Waiting for my cvs and results was much harder this time because  I know how amazing he is but the horrible bit after, he has made it so much easier because he is so perfect.

So, here's hoping Friday goes smoothly and the next baby is in that 75%. Bye bye baby Forrest, you were wanted and there will be no suffering for you and no regret for us.

Results are almost here

My CVS happened on Monday. It is one of the most soul destroying things I have ever had to do (both times). I am not concerned about the Doctor putting the needle in, she is so experienced and the miscarriage rates have changed regarding this procedure so that doesn't concern me but knowing that you are there to potentially take that child's life away depending on the results? That is haunting. Even worse is knowing it isn't a 'likely to be one-off' such as down's syndrome but a built in part of your reproductive life, if you don't want to suffer horrendously 30 weeks down the line anyway.

The test was painful this time. I am not sorry that the Dr had to go in cervically because I just dread the thought of it through my stomach but I honestly felt like that huge needle was stabbing into my spine and rectum. Not pleasant at all, it was so sharp. However, it was easy for them to do and it was done in 2 minutes. I did feel like someone had jumped on my uterus for the rest of the day.

We are lucky in the wait, in that for us, it takes 4-5 days. The rest of the U.K and world is mostly 7-21 days depending. Our genetics labs etc are 'in-house' about a mile from the hospital. That said, the wait has still been sickening, the hours are dragging and I can feel myself weakening. I have very little left to give. Our earliest results (and our team are pretty good so good chance of this) will be tomorrow night between 4-5pm. How do I answer that phone call? I am already having palpitations just thinking about it, I feel sick.

In my deeper being, I feel this baby is healthy but I also doubt myself. Did I really know Ellie was ill from the beginning, that that pregnancy wasn't going to end well or did I just have anxiety? Did I really know Theo was healthy or did I have to make myself believe that to get through the day? I don't know anymore. I never really 'saw' Ellie in my future like I did with Theo but I see this child there and I don't know if its desperation or intuition.

So let's hope its 26 hours and not 50 as it could be, to put us out of our misery. I have 2 potential appointments next week, one is my 12 week scan, or  I could be scheduled in for a termination.

Please Ellie, let us keep this one and I will ask for no more children. My little boy just needs a sibling on Earth :(

Who said time flies?!

I went for my CVS on Monday but it couldn't be done, the placenta was too thin. I have to return on Monday coming and the wait is becoming more and more suffocating.

I quite frankly do not know what I am more scared of. I know the CVS is going to be trans-abdominal now rather than cervical like last time so I have a giant f*** off needle going to go through my belly and uterus. That is pretty bad. Then I have to wait the 4 days to be told wether this child is going to live or die, depending on disease status. And if the worst happens? I have to pick how best to get this baby out and grieve and be expected to live my life as normal having lost 2 babies. And then potentially 3, or 4 or 5 depending on how the Russian Roulette falls.

Every day I get up and I do it for my son and the 75% chance that this baby is ok. Anyone reading this is like 75%? That's loads. It seems that way until you have been in the 25% let me tell you and in my networks, when people have had 3 in a row with ARPKD, it suddenly doesn't seem as great a chance. It just seems like shit genetics from our side.

And so I wait, and pray the guardian angels are on my side

The waiting game

Eventually, it is nearly April! I can feel my positivity slipping away and the stress beginning to build up. Luckily I have lots of assignments and music practice to do to try and while away the days and kids exam results to wait for as well as my usual lovely mornings and days out with Theo.

Theo is my little sunshine and without him this would be so much worse. Although the people who say 'at least you have Theo' should really think before they open their mouths. As if Lee and I don't know and that little boy is our whole world. However, this is still our baby too and that's like me saying to a woman with a normal pregnancy, 'well don't worry if anything goes wrong and you lose that baby, you already have one/two'. It makes no difference, a loss is still a loss and still as painful. There will still be grief and pain. People don't seem to have the sense to realise that.

The worst thing is, I feel that this baby is fine, as I did with Theo, but I won't let myself truly believe it in case I am wrong. I am hoping to have the test as soon as possible so hopefully will hear from my consultant today that I can have it at 10 weeks.

Fingers crossed, as ever

The return of ARPKD

Its been ages since I was here. I really should update more.

It was going to be a big secret but I am expecting again. I actually don't care about the secret although it makes no difference anyway. My first pregnancy was horrific, the second when I found out I cried because I was bricking it but it obviously came really good.

And this one? I felt excited. REALLY excited. I didn't feel even a little bit scared.Maybe that is intuition and maybe not. What matters is Lee and I can cope. My friends have been really great and my sister and even our grandparents. Of course it has taken 2 days for other family members to beat the excitement out of me. I have one who completely ignores it, one who changes the subject as soon as possible, one who put a downer on the whole thing (and they all did the same last pregnancy too).

After everything we have been through, we deserve the right to TRY and have a normal pregnancy in the beginning and be excited like everyone else. 75% is a big chunk. People are always harking on at me with my health anxiety to stop worrying and be positive and yet here I am and they can't put their money where their mouth is to try and help us through it. Last time, I got told not to focus on the fact that a termination was a possibility and focus on the good so I do it and still can't win. I appreciate they may be scared but I wasn't scared and now they've got me that way and torn down my happiness. And instead of being ostriches, maybe asking Lee and I how we are feeling might be helpful, you know, 'cause it's four times as bloody scary for us. Its hard to get attached to a ball of cells really, because that is all it is but it still has the right to be acknowledged. It's still OUR baby

So, I am choosing to believe this baby is fine. And worst case, we will dust ourselves off, move on and try again because it can't be any worse than it has been. Would just be nice for people to let our baby exist and try and be supportive of us, our baby and positivity instead of making us feel like we are making their lives hard.

One more step to the top of the city

It's been a long time since I posted here. So much has happened. I was determined to make this year an awesome one, even better than the one before. I'm actually, with my health anxiety, a bit concerned I may have a terminal illness because the year has been SO great.

Feb 7th was the 3rd anniversary of Ellie's passing and that day, I decided I wanted to do a big charity 'IT'S A KNOCKOUT'. My days, I did not expect it to take off the way it did, it was huge and we raised a fortune. The day was amazing, so much fun and people want it again next year. It was for Tiny Lives at the RVI and 4Louis and we raised about £3500 for each charity, it far surpassed what I was expecting. June was a busy month all round….there was that, I got to see Dolly Parton (who was bloody excellent, well worth it), I did a zombie run in Newcastle (my heart nearly packed up) and we went to Alton Towers. Cbeebies land had just opened up so we took Theo. I didn't think he would like it that much given at the time he was into Disney channel but as it panned out, he loved it and now he is all about the cbeebies channel haha. We are going to go back next year hopefully.

In March a huge thing happened. Kate Bush (who I never thought I would see in my life) announced a 15 date residency in London. This was then increased to 22 dates but due to the size of the venue, it was still going to be like catching gold dust trying to get a ticket. For a week, I moped with the not knowing. She is my music idol, one of my biggest heroes, just THE ULTIMATE! Well, the day came round and during the 15 minutes it took to sell out, I GOT A TICKET! After seeing Dolly, I was like, Can Kate Bush live up to this? My ticket was for September 24th, down in London. As the concerts started, the reviews were amazing and I just got more and more nervous. Then the day came, it was such an adventure. Lee said I achieved a lot because, with my anxiety, I went by myself to London and just loved it. I nearly had a couple of panic attacks before the concert (it still manifests as health anxiety, so if I am nervous about something not health related, I get convinced I have a DVT or something, its bizarre). I got to the Hammersmith apollo, bought a load of merchandise and went it. I had an hours wait once I sat but I was really close to the stage. When Kate Bush hit that stage, I realised I probably should not have put eyeliner or mascara on, since I bawled and I couldn't accept I was hearing her live. It was so amazing, so unreal. At one point they brought her out into the audience and I nearly blacked out. It literally was one of the best nights of my life. I can't wait for the DVD.

Work is going really well, I have a few students and they are doing great. I really love teaching though it is so frustrating sometimes. After a failed stage school type venture, I have also started running a community choir and I just look forward to it so much every week. I have a bunch of kids in for exams, I am doing my pop and musical theatre exams, I've started writing my own stuff, my instruments are going really well. I'm just so inspired! I also joined an operatic society and am in my first big musical next week (which is Scrooge). It's exhausting but has been fun. I ran my first concert in July and am doing the next one just before Xmas. It's gonna be great, the last one was really successful so I think this one will go even better as my students are getting better and I am. I have a lot more confidence on the stage. I don't know why, it just kind of happened. I am receiving an award in Dec for being the highest mark for Grade 5 pop in the North East and so it will be competition season!

Lee and I celebrated our 3rd wedding anniversary last month. We went glamping which was really fun. I didn't think I would like it so much but it was awesome!

My degree is ongoing. That is hard work, fitting it round everything but I figure, a bit of slog is worth it. I have taken on a bit much this season but hey, better than having no goals! I also just got my ticket for Neil Diamond today, I have wanted to see him for years but have always missed him but next year is the year! That will be in London so another adventure. My friend is going to come this time so it will be awesome.

I've saved the best for last, the best being my perfect peach. There is so much I could say but I could never do justice by words. He is the sun, the moon and stars and then some. At just over 2, he can count to 15 almost, knows all his animals, colours, opposites, vehicles, shapes, loves to dance, is a sweet little singer, knows who Dolly Parton is(!), is very strong willed and funny, knows his own mind, is affectionate and loving, loves his teddies, loves Timmy Time/In the night garden/Mr Tumble and the Gruffalo and a million other things. He is so funny it hurts sometimes, the stuff he does. I love it when he hides to do a poo, or makes me put CDs on my finger so he can spin them. He is still obsessed with spinning socks, or anything else that spins i.e. washing machine, windmills, wheels etc. so when I found a solar power windmill in London, I had to buy it for him. His little face was amazing! His birthday was great last month when he came in the room and said 'Presents!', gently removed the birthday cards out the way to get to the presents. He had a little tea party and loved it. A week and a half before his birthday he got chickenpox and wasn't a bit of bother. He loves Christmas candles and his new phrase is 'Theo coming!' whenever we go anywhere. His favourite places are Space to Play soft play and Plessey Woods (where we go gruffalo hunting). He has just stopped calling sandwiches 'faringes' (which I loved) and now calls them 'sanwhinges'. He loves his family and has a wicked temper. After CBT and coming off my anxiety tablets, he keeps me a little bit sane and a little bit mad and makes me laugh and smile so much. I could say a million more things but I'm tired.

I wrote this blog because tonight has been the Wave of Light, in memory of all the angel babies. I often feel guilty because I don't grieve that much anymore, mostly because I am so busy. I never forget about Ellie although sometimes, it was so quick it feels like it never happened. I know this is what Ellie would want, all these exciting memories and things to look forward to and looking back on this year, I have done and experienced so much to make me happy that when I think on it, it reminds me how, even in awful times of disease and war and our own personal problems, life can be amazing and everything you want it to be and I am so lucky. I get scared a lot, mostly of anything happening to Theo but we keep him safe and he has the best guardian angel (he loves cuddling Ellie's blanket). ARPKD is a part of who Ellie was and who we are even though we don't suffer the disease but it has also made me who I am now and right now, I'm really happy with that person and this life.