Friday, 18 September 2015

End of the line

And hopefully not the bad end of the line!!!

I had to wait an extra week for my CVS with Dr Sturgiss. He just couldn't get that first week, far too risky and I trust him with mine and my baby's life so I was OK. Lee, not so much, but that week passed quickly.

The following week, foetal med were running 2.5 hours late, just enough time to have me up a height. There are only 4 doctors covering 5 days now Dr MacPhail has left (still incredibly missed on my part but Dr S. is amazing too). Eventually they caught up and I went in and got the green light. We got the anaesthetic in and then the green light turned red. Devastation to say the least. I went for a wee and came back, and he did think about things for a while but then we got the green again (the position can change so quickly). By this time, I was in a lot of pain, not from anything related but from my clenching the muscles around my ribcage with stress. More anaesthetic and then the actual huge needle. After all the worry of the abdominal CVS, it was a breeze. I do not even know why I requested the cervical one last time!! Afterwards though, I got quite a lot of pain in the right side of my pelvis and promptly was sick in a bin. The sick was just water and paracetamol and definitely from my own hyping myself up, not the test! I did feel sore for a couple of days, and turning over in bed was HARD.

The next morning, early hours was horrendous. Went to the toilet. Blood. It was awful because you just want a chance to get the results. I went to the new hospital A and E in Cramlington. 4.30am and I still had to wait a while but once I got triaged they were very quick and amazing. They did a scan, baby was fine. As it panned out, just a bit of placental irritation and the bleeding was almost done. It did continue as spotting for a couple of days but that was one relief.

I was expecting the call late monday afternoon or potentially Tuesday if they couldn't get the result from the Centre for Life. My usual genetic counsellor, Gill, is on annual leave and Susan that was going to call is the one who gave me the bad news. On Monday morning at approx. 11am my phone went with the genetics number. I figured it would be another day's wait so I answered and Susan told me 'We have your results'. I felt shaky. 'It's bad news, isn't it?'.

'It's NOT! Baby is a healthy carrier'. My whole world just tilted on its axis. Until you receive a call like that, you can't know how everything in your head explodes in the best possible way and you just cry. Another little BOY! This 5 year journey of hell and amazing-ness (in Theo) has led to this. We are some of the lucky ones. I guess the really lucky ones are those who never find out they are carriers but never think you are the worst off……there are PKD families and CF, etc who have 2 or 3 or even 6 in a row affected. There are families carrying dominant traits, a 50/50 chance. There are families who don't have the strength or the teams that we do and give up.

This will be my last pregnancy and I know a lot of people say, with their second or 3rd, especially of the same gender, they are less excited. That doesn't apply here. I am SO excited. Now named Ewan Evan Seren (after Serenity) Forrest, he will be as loved and treasured at Ellie and Theo and we are just so grateful to be at this point. I never felt that broody but was conscious that I wanted a sibling for Theo and I think I can hand on heart say 2 is right for us. We are lucky to even get this chance without a string of horrible results.

I am still petrified. I am 14 weeks and have to get through the 20 week scan, always a nightmare. I do believe it will come good but being on the inside of so many losses of friends is difficult and you know there is never a safe point in pregnancy. A 3rd C-section terrifies me. However, the RVI and Dr Sturgiss are phenomenal and will help me through. Even their MAU sound amazingly caring on the phone (as they were with Ellie).

I will try my best to enjoy all the lasts and fight against my anxiety. I will never be a victim because I choose to try and look at all the good. My lot in life is evidently to be surrounded by good looking men!

Thursday, 20 August 2015

More goodbyes

I come here less and less it seems but once again, I am back on this roller coaster.

I am nearly 10 weeks pregnant. I am so glad it happened quickly if only for the reason I got to say goodbye to the doctor who made me brave enough to do this however many times it takes, took away the fear of my termination last time, and made me realise we aren't just numbers to these doctors. Sometimes, they do care. I don't ever make a secret of what I think of the NHS maternity care round here….being a very complex case, our care has been superb but these guys at the RVI in Newcastle, they are a special breed. You don't get better. So when I turned up on Monday for my pre-CVS dating scan and they told me the ever worshipped Dr S. Macphail (I use names in case, on the off chance they ever google themselves, they will know how much of a difference they made to me) was retiring, I promptly burst into tears on the spot. Of course, this is me, who when I fell pregnant with Theo, was indignant at being given this unknown doctor instead of Prof. Robson, but nevertheless, she was the strength and bravery giver of my last pregnancy. Anyway, this means I am pitching up on the 2nd Sept to have a CVS (through my stomach no less, cue the nightmares) with the head of all of women's services in the RVI/Newcastle trust. So, the best then. The only thing is, the last time I saw the guy, he was telling me my daughter had ARPKD and all the other blindsiders that came with it.

I had coped fine until Monday. Now I'm in shock a bit because in 3 weeks time, I could be losing my 3rd baby (well, 4th but 3rd potential loss). And that might be the 3rd loss of a potential however many. I haven't really allowed myself to believe we will hit the 75% because what is the point? It must be so nice to be able to accept people's congratulations instead of saying 'well actually I might not be having a baby' or to not have people expecting you to hush hush your pregnancies as if it is shameful up to a point where told otherwise. I really wonder what that is like, genuinely (not said with any sarcasm but true questioning).

So for now, we carry on because we are made of metal. And each time it happens, people will continue to care a little less, just think 'why do they bother' or make me feel a little bit more ashamed that I would do it again. But I don't need any of those people because I have team RVI Foetal med on my side and when they come back wanting the joyful bit, I will see through them.

This disease will not break me.

Sunday, 10 May 2015

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 

Monday, 4 May 2015

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.

Wednesday, 29 April 2015

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 :(

Wednesday, 22 April 2015

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

Monday, 30 March 2015

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