This weekend we had some friends around on Saturday that I haven’t seen since we found out.

It was lovely to see them and the twins were loving playing outside with them…when cars arrived and out jumped my entire family for a surprise mini baby shower. Another of my good friends from my last antenatal groho came along with all my brothers and sisters and their kids.

I was not expecting anything, so was in a bit if shock. I missed the twins surprise baby shower as we ended up with torrential snow and unable to get over to my mums so my sister had to cancel it. But wasn’t expecting anything this time round! I said to my husband it felt like we haven’t even been able to celebrate this pregnancy or get excited yet. So it was quite overwhelming. Also don’t like lots of fuss without drinking!

My mum had made lots of chocolate orange cupcakes and set up a monkey decorating station. To tie in with the nursery theme, it was so cute! All the decorations were jungle themed, so lots of monkeys everywhere. I loved it! My monkey cake wouldn’t work though, don’t think I had enough icing on it to stand the chocolate buttons in…

My sister had organised a book of guess the babies…name, weight, hair colour, due date etc… My husband and I have had

Despite the initial shock, we had a great (albeit knackering) day. Was so good to see my friends again and we finished it off with a hot tub and takeaway to completely relax!

35 week scan tomorrow with only two weeks to go to c section! Any bets on whether I’ll get there?

Finding life harder now! Heavy, aching legs, constantly out of breathe, peeing constantly and unable to do normal things like put shoes on!

I’ve made it to September!!!!! This is the month the baby will come! 

I can’t believe how quickly it has happened. With all the stress taking up the majority of our pregnancy I don’t really feel like I have been able to enjoy it and it has all gone too quickly. 

I was at my nephews birthday today and I had a full on day. My husband was nakered and I feel guilty for having all the lie ins lately so I told him he had to stay in bed. I got up with the twins and had a crazy productive morning: 3 loads of washing, dishwasher done, babies up, dressed, dogs fed, my breakfast, babies fed, coffee for the hubby. Then once the babies had lunch and were down for their nap I made a chocolate cake, got ready and had lunch.

I feel like I’ve done a stupid amount today! But I am so happy to have made it to 34 weeks and September!

On the drive home from my brothers I started thinking back to when we found out. The uncontrollable tears, the sense of why am I getting screwed over again life is shit and not fair. 

Kurnel started to kick me, it is getting extremely uncomfortable now. I remembered how much I used to dread the kicks. In the weeks of uncertainty every kick was like a stab to the heart. I remember crying so much, I wanted the kicks to stop, I wanted everything to go away, I didn’t want be pregnant. I remember so strongly the overwhelming sense of people getting excited over my pregnancy, asking about the kicks, people touching my belly and me just wanting them to stop. I hated the kicks and their excitement made me angry. Even my husband stopped touching the bump. 
Thank god those feelings have gone. Now I want the kicks to stop as they hurt! I still don’t like people touching bump other than the hubby. It’s my baby and I want to protect it/keep it away from people. Not have them feeling like they can rub or kiss it. The kicks also scare me as I know they are unlikely to be able to feel their legs and it’s just because they are floating/inside me they can now. I don’t want any hopes to be raised.

But I know this baby will be ok now and I am so happy to have made it this far! 

This bank holiday weekend has been a bit of a chaotic one, but actually felt like we had some normality which was amazing.

Firstly on Friday I had a chat with work, turns out nothing has been done for my maternity leave preparation, and an interim HR manager is now slightly panicked at sorting it!

Then I had a chat with UCLH were I asked whether I would be able to do work again or not as my sick note is up. They are right, I really shouldn’t be risking everything we have gone through just to do four weeks worth of work. It isn’t worth it! So I have been signed off for four weeks more, which will take me up to my c-section date. FOUR WEEKS!!! How is this possible already!?

I was also sent my MRI results very late Thursday night, so had a chat about these. They are all very doctors speak and I am definitely not a dr. So it can be a little scary/worrying when you see things that look like they aren’t “normal”. But I was reassured, the hind brain herniation has completely reversed which was the best news! Everything else looks good too, so the surgery has been a complete success!

Saturday consisted of garden fun with the twins. Playing in their paddling pool, on their bikes, running around (mainly them) and laughing.

On Sunday we went over to our boat with some friends for the day. It was carnage with two babies and two dogs, but we had such a lovely day. With a picnic by the river with a cheeky ice cream (much needed in 32 degrees!) lots of laughter and fun had by all. I didn’t throw any ropes, didn’t want to strain myself but I was able to drive for the day. I love being on the river, it is so calming, makes you feel like you are on holiday for the day. Ultimate relaxation.

Then Monday we went to a local town country fair with my sister. It was again, stupidly hot! We had a walk around and saw some friends that we haven’t seen for ages as we have been swept up in the medical chaos. As well as looking at some lovely arts and crafts stools. Obviously we bought some obligatory country fair cheeses, some home made fudge and some shooting get up for the husband. Then we went home for a paddling pool splash about, BBQ and hot tub relax once the babies were asleep. Was so nice to get out and all weekend! My feet definitely needed to go up now though.

Tuesday we had a scan in London in the morning, with the vents now measuring at 11 and 8.8!!! This is amazing I can’t believe we are pretty much in the normal range again. This is really good news for a post delivery perspective. Fluid levels are looking good, back is all healing nicely and my pocket of fluid has disappeared entirely too! Honestly couldn’t have better news, I am feeling really, really positive.

I think this post has really proven to me how much I can do that I didn’t think I would be able to. I am able to go out of the house and walk around. I am able to (although taking it easier) go to the boat and have a day on the river. I’m able to pick up and cuddle my babies, play with them in the garden. Essentially if you didn’t know, you wouldn’t know. You would just think I was pregnant. I am so much more mobile than I thought I would be, although I really have to take it easy and not push myself by standing up constantly or doing strenuous tasks, I am amazed by how much is possible and how much my body can withstand. Not only how much I can do, but how much the baby can do! It is smashing targets and I couldn’t be prouder.

With only a week to go until our target/average 34 weeks, I am positive I am going to go well past this. Bring on 37 weeks!

Friday morning was pretty emotional. I woke up pretty exhausted and just a bit teary. My husband came back into the room and found me just lying on the bed in tears. I’m just worried for our baby, that I’m doing the wrong thing. I know it’s horrible to think like that as I am so far along in the pregnancy (32 weeks) and I know I wouldn’t do anything as I already have so much love for this little one. But I’m just so scared. For their future, the battles they are going to face physically and emotionally. 

I had a call from my uncle and told him about what was going on and I think it just brought back some of the raw emotion from the decision making process that we went through initially. This made me talk to my husband about what we’re going to do once they are here. I know it’s no ones business but I think to stop having to go through everything over and over again or having people confused about things (I’m hoping/pretty confident as a baby no one will know any different it will just be when they are older.) I think it is going to best to just put out a post to welcome our little one and let them know our baby is a spina bifida warrior, already stronger than most people we know having been through surgery before they were born! 

This weekend I was also meant to be at one of my best friends 30th birthdays. I am completely gutted that I can’t go, but we couldn’t risk being away from home or anything that could kick start labour.

So we took my wheels out for a walk around a local national trust home. It was really nice to get out, but the wheels started to give up going up hills which meant walking the last 5 mins to the car but luckily it didn’t need to be pushed. So must have just been my fat arse! 

Talking of which, when they weighed me at my MRI on Tuesday i had put on 18kgs!!!!! Given the NHS advises 10-15 at 40 weeks I’m massive. Ahhhhhh I’m getting fat again. I did this with the twins too. In fact with them I put on 6 stone. I just appear to carry a lot of weight when pregnant which is crap! 😦

So today is a big day of scans! I’m at the UCLH all day with a booking in appointment at 10 and then onto an MRI before the scan with FMU. A long day but definitely worth it!

I had the midwives round again yesterday. They were checking up on me and how I was feeling as well as wanting to do my BP and other checks to make sure everything was ok. Babies heart beat was lovely and strong and mum got to hear it for the first time which was nice.

This morning so far we have travelled up to London where I had the booking in appointment, I’m currently sat waiting outside the MRI room to go in.

The booking in went fine, they were lovely about everything and the midwife was amazed by everything that was going on. She’s only just recently heard about these operations (they’ve only been doing them in the UK since late last year so I’m not surprised!) She mentioned the first she had heard of it was when looking after another lady who has just had the op about 2 weeks ago which is amazing! They are doing more and more of them which is only good from a medical advancement point of view and the family obviously doing what is right for them! Mum got to hear the heart beat again as my husbands a bit poorly today so we left him at home to rest for the morning. She was very happy about it!

Then I had bloods taken, given they struggled yesterday I thought they might again today. Think the nurse had a stressful day though as when I mentioned the local midwives struggled yesterday she asked why I hadn’t just been sent here. I said because I’m not local, got a glare “you’re not grateful?!” Nope nope nope definitely not what I said, doesn’t even make sense to the question!

Leaving mum in the waiting room reading whilst I head in.

Will let you know how the MRI goes! Fingers crossed for no fainting or panic attacks this time around!

I’ve finished with my day of appointments and I am absolutely shattered. The MRI went really well. 3 baby was head down with a hand resting on their face. Very cute! They kept me updated throughout, which was really helpful. Strangely though I seemed to be kind of ok but the noises made me jump and then once they spoke to me I would open my eyes then have a mini freak out. But managed to stay still so that’s all ok! I got very hot again, but I had told myself I would be fine so just tried to keep calm and only move when someone was talking to me. When I needed to pump my hand because I was cutting off the circulation off from it, or move my leg slightly to stop cramp. But they did everything in 30mins and got all the images they needed which was amazing.

I was then taken through for my ultrasound. Everything seemed to be running a bit late though so I ended up going in over 30mins later than planned. The team seemed happy with the scan which again is great.

But I’m so anxious about the hindbrain herniation. I am keeping everything crossed that it has reversed, but obviously without being told it has I’m am begging for the good news! They have booked in for two weeks time so we can have our care there rather than locally. My husband doesn’t feel comfortable going back. As well as a glucose tolerance test and my 34 week midwife appointment. By the time we got home my poor mum was sick and the twins were exhausted so we put them all of them to bed. Then collapsed on the sofa before mustering up the energy to get some spaghetti on toast, now we are definitely going to be going to bed early!

Today we are at our local specialist hospital.

Parking is a nightmare here and unless you are here before 8 be prepared to struggle finding anywhere!

Our first appointment is with SSNAP, an independent charity who are going to show us around the SCIBU unit. We had asked for a tour of where I would be giving birth and the maternity ward but was booked in for this tour instead.

The work the charity do is obviously amazing. They showed us all the high dependency, low dependency units as well as the accommodation they can offer for parents out of area. They also go to the “nursery bays” to support parents and babies whilst in NICU care. In the high dependency nursery, there were lots of babies in incubators, lots of privacy screens up and drs around. Which I won’t lie is quite daunting.

With my twins, they were in NICU but I was in intensive care so I didn’t go down to visit them. The only visit was when they came to see me. So seeing all these tiny little babies in their incubators was very strange. I also was confused why I was here as we are fairly confident so long as we can get to planned that the baby shouldn’t really need time in NICU, unless I’m just burying my head in the sand and they will?

Had time between appointments so went to get coffee and cake. Only on Sunday were we talking about how the eccles cakes you get from the shop aren’t what my husband remembers them to be  i tried to tell him this is because they aren’t from a bakery, but he was in luck today as they had the proper ones with sugar on top!

Our second appointment of the day was with the scan and consultant. I honestly couldn’t make up my mind whether I loved him or hated him. But my husband sure knew!

A younger lady was doing the scan, I wasn’t sure if she was a student or something as she seemed to have a basic idea of what she was doing but was getting a lot of guidance from the consultant as where to scan and what angle to do it from. The consultant was popping in and out of the scan room into the office attached throughout. It was all a bit strange.

The weirdest part of the whole scan was when she had finished he said he wanted to have a check. So he put the scanner on my bump and started moving it around, didn’t really look at the screen or anything in particular other than the spine. Then pretended to intermittently move the scanner but leaving it for prolonged periods of time whilst talking.  Used a few big words to the lady as if he was showing off his superiority then started talking about the operation. Mostly as if I wasn’t there.

He didn’t say anything that I didn’t know, was just a little strange. He started talking about the neuro team and saying how incredible they are as if up-selling them. And then spoke about why they as a hospital had decided not to offer the surgery themselves. Due to the enormous risk to the mother not outweighing the benefits in his opinion. The lady was saying how amazing it was and that it’s great to see people are able to help the future of their child with it. But he just seemed to be trying to make a point….that he didn’t agree with the surgery.

We then had a chat in his office where he told us he didn’t want to book us in at the hospital unless we were sure we were going to give birth there. As it would be a waste of time and resources for them all and would damage relationships between departments as well as the hospitals. He made me feel as if I was a burden and wasting people’s time which wasn’t great. He also said there’s no point of meeting the neuro team unless we know where we are going. And there’s no point of a maternity ward tour as they are all the same. He was more keen on me to have midwife appointments to check on my stats, glucose tests and making sure I don’t end up having other complications that could prove fatal if missed because everyone is so focused on the Spina Bifida. He even bought up the fact that I had preeclampsia with the twins and that a mother died in some other trial around SB surgery due to getting preeclampsia and it being missed because of the midwife care not being sufficient .

Part of me liked his honesty but mostly I was sure he was saying this stuff to make a point, he said he didn’t see why I would give birth there as the drs at UCLH know me and my history. So definitely felt like he couldn’t be bothered with the hassle my situation would bring.

My husband on the other hand was really pissed off. Especially as he was going over and over all the risks to the mum which we already know and wasn’t doing what he was supposed to be there for…to check the baby.

Looks like he made the decision for us and we won’t be delivering at our local hospital!

On a side note my little girl was poorly at nursery today and threw up all over their floor so had to go collect her, she then proceeded to throw up in  the car and again all over me. If that wasn’t enough to ensure I had a shower my son threw baked beans at me. Winning!

30 weeks!!!! A massive milestone for us, we just want to get to 34 weeks and I’ve now got less than 4 weeks to hit our target! 🤞🤞But as you can see, o my goodness can they wriggle. It’s like there’s an alien inside me! So much movement it actually makes me feel a bit sick! But defo loving it nonetheless. 

This week I have been a lot more mobile and feeling like I’m back to normal. Which is great but I have to keep reining myself in to stop over doing it. 

I went to the cinema to see the lion king, which is amazing! Not enough Rafiki for my liking though. We also went to the garden centre to get some more new plants and have coffee/cake with the bambinos. They couldn’t get enough of the cake and were very excited about it. 

I’ve done a bit of work this week. Even though I’m signed off for 8 weeks, I have done some emails and had a couple of calls but not sure if I am meant to be. Work said they signed me off for 4 weeks but can extend if necessary. Even though the drs note is signed off for 8 weeks. So very odd. Waiting to hear back about it now as I’m not even sure if you’re allowed to legally work if signed off by a dr. Anyone know?

Great week though, new cleaner is also amazing so fingers crossed for this week! 

So so soooooo proud of the husband for getting this done so quickly! He literally started the tree Friday and had it all painted by last night. He then set the cot up last night too after dinner, super human.

We didn’t want to do the nursery or buy any of the bits until we knew what was going on. We felt by buying it all, everything became more real. We didn’t want to make it real and feel like we had made a decision until we had. 

Given that we are now in what feels like a more safe zone, the time felt right. 😊

My husband has always loved monkeys so we decided that would be a great nursery theme. With the twins it was penguins and arctic scene as I love penguins. This time it was monkey’s. 
Love it, so pleased!!!

So Mum sent us out for dinner today. 

Tbh when she suggested it I really didn’t want to go. My stomach is hurting, I’m tired and I feel a little over done today. But I’m so glad we did. 

We had gone to Aldi this afternoon to get bits for Sunday lunch tomorrow. My husband loves the middle aisle as much as I do, what rubbish don’t we need but looks amazing, whoops it’s in the trolley. 

But after this my stomach was aching, felt like a bit of a stitch/constipation even though I know it’s neither. So when mum suggested dinner I just wanted to sleep.

Then the twins started winding me up. The boy decided in the space of 15 mins to pull on the wifi twice, hit one dog, hit his sister and kick the other dog. Then when I told him off he just looked indifferent, as if he wasn’t listening at all. Then started dancing. Infuriating. Then at dinner they were playing up and refusing to eat pizza -one of their favourites. 

By the time they were in bed, I was drained and ready to cry, I didn’t want to do anything. So went to lie down for a bit. This space perked me up a little and I decided to force my butt up. 

So glad I did, had an amazing mocktail and some really nice food. Plus the time with the husband was alright I guess. I joke, it was amazing to laugh and make him laugh. I worry about him lately, taking too much on emotionally and physically. So love to treat him and make him relax a little. Booking him massages or going for dinner is all I can do right now I guess! 

Great night.

It is so hot today! This week is seeing temperatures of 37!!!!! I live in England. We are not built for this, no air con so lots of fans. Plus pregnancy and not being good in the heat anyway is not a good combination. My dress feels like it is stuck to me!

But I went for my first trip out not to a hospital! Yey! We went for coffee and then a good old Waitrose shop to get a “snacky dinner”. Essentially lots of cheeses, olives, salad and crisps J had a delicious tart au citron and mango/passion fruit smoothie as a treat. Mum tried to pay but honestly she has done wayyyyy more than enough I don’t think I could through enough treats at her!

This morning she cleaned all the bathrooms whilst I was dripping in sweat just from sitting still! Mad woman but super woman!