We were called by GOSH Wednesday morning to tell us they had managed to get an appointment booked in for Friday at 1pm. They have also managed to get his kidney check booked in at the same time, which is good news as they didn’t think they would get it booked in for 2 weeks.

The twins were at nursery and the husbands best friend came over in the afternoon to sign some documents for us. Turns out that having a baby isn’t enough to deal with, we decided that we needed to remortgage and my husband change jobs all at the same time too!

The waiting for the appointment is a killer though. I keep cuddling him and just begging for everything to be ok. But the reality is, if it isn’t at least it is done and we don’t have a worry any more! We have an answer that it has to be done….even though we don’t want it at least the anxiety and worry will be gone. What is the better option I guess!

In my gut I really don’t think that there is anything wrong, and that it is a growth spurt but I could be really wrong I guess!

I managed to finish a jumper that I have been knitting for nearly 2 years on and off last night. Stitched and all tied off, just need to find some nice buttons for it. Really impressed with my first knitting attempt, not a bad job!

One more day to go until we our first trip to GOSH. I can only imagine it is the first of many throughout his life.

So the Health Visitor came round today and seemed to have tried to get a grasp on what needed to be done for our little one.

She had called GOSH to chase up our referral and also ask for guidance on what is needed locally. They basically said they only received our referral this week so are working on getting an appointment in the next two weeks.

We ran through lots of different things, like hip scans as he was a c-section baby, jaundice checks if needed etc…

Then she suggested doing a head circumfrence check as the midwife did one last week but would be good to have a starting point for her.

Cue panic.

The HC has increased by 2.4cm in a week (if you take the midwifes measurements) and has gone up from the 50th centile to the 91st centile since birth and last week….

She needed to call up GOSH to see what they say about this, so rang us back to tell us GODH were aware and would be calling me this afternoon.

We went out for lunch as planned to try and remain calm to some degree. Despite looking tired as hell and having eyebrows the size of slugs, I even got a first public breastfeed photo in 😉

But I still hadn’t heard back from GOSH by 10 to 4. So I rang them when on way home, the Neuro has said he wants to see us fairly urgently, but the secretary was on her way home so not able to deal with it until tomorrow morning.

I know this should mean that we don’t need to panic, but it also means we are now waiting over night so I’m worried. I was hoping they were going to call back with an appointment for us tomorrow to check him over and get his head scanned, but looks like it is more likely to be later this week/next week now.

I shouldn’t be panicking, it is probably nothing. It is probably related to a growth spurt. He has also increased in weight by a percentile. But I also can’t help feeling like this isn’t fair. I shouldn’t have to have these sort of worries, he is only 3 weeks old. My poor baby 😦

Sorry I’ve been a bit quiet lately. My world has been a whirlwind of midwives, twins, feeding and changing. We’ve been home almost two weeks now!!! We’ve even been discharged from the midwives into the health visitors care now. When I saw the midwives they picked up on a haematoma on my stomach, they thought it was from the scar/operation. I couldn’t feel it as it was in the massive area that is completely numb now. But when I touched it was rock hard, and yellow. So they came back to check again and decided I should go to the labour ward at my local hospital to discuss it.

When we went they took forever to see me as the Dr was having to go in for category 1 c sections. Mine was a category 2 so the poor Dr was in an emergency. But it meant by the time I was seen baby was really hungry, the twins had been bathed and gotten ready for bed by my mum and the pharmacy was closed. The consultant thinks it is from the blood thinning injections and wasn’t too worried but wanted me to take antibiotics to ensure there wasn’t any infection.

We were told we could get them from any hospital including both our local hospitals so my husband went to get them after dropping the twins at nursery and discovered they are part of a different trust we couldn’t get them from there so drove all the way to the other hospital instead. Nightmare! We also had a health visitor come to see us. They didn’t seem to know anything regarding what they needed to check for spina bifida, so I think I’m going to have to push them to get in contact with the specialists and pull their finger out though. They didn’t seem to know about checking the head circumference which I thought was standard.

Anything else I should be asking them to do?

We’ve also met all of my side of the family, just my husbands family to meet now. Going to try and go for a visit to husbands mum this week if we can. We have had lots of family time, walks, park trips and generally making the most of Daddy’s paternity leave. Not sure how I am going to cope when he is back to work. Really worried about it! Also having a few emotional moments with bubbies movements.

He has a bit of horrible nappy rash so we were advised to put him on his front on a towel without a nappy. When we did it he started using his legs to push himself forward. I can’t believe how strong his legs are. It just made me emotional. Why o why is this happening??? I really wish I could take it away. I keep seeping into false security where he is a baby so I don’t see him as any different, then BAM I’ll suddenly have a moment of realisation, how hard it is going to be and how unfair it is. I’ll get all emotional and just want to take it away for him. So so proud of him and how strong his legs are but that in itself is upsetting as I know it’s unlikely to be a reality and he won’t be able to do all the things his brother can or other kids his age.

It’s so unfair.

It has been a massively manic few days. With bubby feeding every hour on Sunday, and managing to calm him down a bit and get more regular 3 hour feeds established on Monday/Tuesday.

My husband went home on Sunday as he needed to pick up some bits for us and baby. It was the first time I was left by myself with the baby, and I just felt really overwhelmed. Probably just the hormones, but I couldn’t help crying. A lovely lady in the bay next to me overheard me crying and came in to check I was ok. She was so sweet, offered her sister to go and get some bits for me if needed. It wasn’t necessary but knowing there are lovely people around really helped.

On Tuesday, after asking the Dr on the ward several times about the GOSH reviews we needed it seemed like he suddenly pulled his finger out and got everything done.

I needed to get downstairs in the next 30 mins for a kidney scan, so I finished up feeding him and ran. The dr told me to just carry him in my arms, and that although it was raining I would have to take him outside and round the building. I thought this was mad, and double checked are you sure? But did what I was told and got going as only had 20 mins to get there. As I was walking out of the ward (through one of the doors) a midwife stopped me to ask if I was going home, and I said no I’ve been told by the Dr I have to carry the baby downstairs. They said no you have to have him in a cot and be escorted you can’t just walk! I knew it!!! Anyway we managed to get there and he had his kidneys all checked.

The kidneys are perfect! You apparently wouldn’t even know.

So now to wait for a headscan, there is only one person in the NICU ward able to do this so we needed to wait for them to come up to see us. Also waiting for the physio appointment.

If we hadn’t heard anything by 5pm they will have all gone home, so won’t be discharged until tomorrow.

At about 4pm the physio came round and did all of his checks. Amazing news! He is acting at more of a L5/S1, so four or five levels lower than he is. He also has reflexes in his feet!!!! Could not have asked for a better result.

Given up that we were going home, I was in the process of convincing my husband to go home so he could drive up to get me the next day. When the Dr came round and asked us to go with him downstairs for a headscan.

The consultant downstairs was lovely, she did the scan and said everything looked great. She even did the measurements they wouldn’t normally do so that we could compare it to the results we were seeing throughout the ultra sounds.Turns out his ventricles have reduced even more!!! We are now down to 8mm and 6mm, so well within the normal range.

The consultant wants us to have another jaundice check. But I genuinely couldn’t be happier. What a result! He is smashing expectations and I know the sugery has made a difference. I knew he could feel his feet when we were stroking them!

They did a jaundice test which came back fine. Then told me I could be discharged today if I wanted, or tomorrow morning first thing.

We decided that it would be better tomorrow as my husband would have to go and get the car seat/car which is an hour away on train and about 3 hours back in to drive. Then my husband decided he couldn’t wait anymore so went to Argos to pick up a cheap car seat just so we could be discharged.

We were finally out of there by 8.30 and getting the train from Euston Square.

I hadn’t told my family but we decided we would drop in to see my mum and dad so my dad could meet him as a surprise.

There were tears, squeals of joy and lots of cuddles. I was finally home and it felt amazing. we decided we would leave the twins at my mums until the next day as it was now almost 10pm and we didn’t want to disturb them.

Now for my first night back in my bed. I am so pleased to all be home and safe!

We had breakfast with my family this morning as it is my mums birthday. Given everything else it was difficult to get out of the hotel and back to our baby with the twins, the wedding and other family stuff so we decided we would stay with them until 11am and then head back into London.

When we got the train though, they were all cancelled from Wembly Park meaning we had to get the jubilee line to Bakerloo and then back up. Decided against the last train as staff said the bus would be quicker, so got an uber across instead. Took twice as long as it should have but we got there eventually. Fed bubby as soon as we got there, then after lots of cuddles went and had some lunch.

Came back for next feed again, then had to go up to see the community midwife. She was lovely but wasn’t really able to give much of an update. Despite being told that she would likely be the one who has to re admit us. Started talking about logistics for tonight. I thought it just made more sense to stay over tonight in a hotel and spend some time tomorrow with him before going home tomorrow late afternoon to see the twins.

We were in the process of trying to sort when a Dr came in to give us a bit of an update. We asked her about why they were looking to discharge us to Milton Keynes hospital tomorrow, and she wasn’t aware of it at all.

So we started talking about what had happened and the midwife appointment where we were told she would have to be the one to admit me again. The Dr wanted to know what had happened so we explained the situation from yesterday.

She was horrified.

Asked to go and check all the rest of the information with the sister in charge.

Next thing we know, the consultant and sister in charge are in the room with us asking why we were discharged. Again both disgusted with what happened. Then they asked if I was breastfeeding and asked the nurse if she thinks if I was here I would be breastfeeding constantly without any top ups. She agreed that I would be.

They disappeared.

When they came back, they had admitted me and already gotten me a bed upstairs. They even said that our little man was well enough to go with me!

The most amazing end to what was a horrendously stressful situation. So so happy to be back on the ward and back with my baby.

Sleep was not great. Two babies on the ward and they just seem to be left crying rather than picked up, fed or cuddled. Not really sure why. But meant I was awake a lot. Got out of bed at 6am and went downstairs to see little one. But my wound started to bleed so had to abort and go back upstairs just to try and clean it up/check with the midwives.

Decided to have a shower to try and clean it, then the midwives can come and check the wound and redress it if necessary.

They came and had a look but weren’t too sure so went to get a second opinion. I decided I might as well try and get make up and hair done just in case I can go to the wedding. Managed to get it all done before the midwives had even come round to sort.

Then ran downstairs to try and see the bubby and give him a feed (now an hour later than needed!) My husband arrived whilst I was getting him out. He was crying so I put him on to feed and he had a huge but quick feed. Went on each side for about 5 mins each but was constant and completely comatosed by the end of it. So definitely got some milk out! Given how much I pumped earlier Im confident he had at least 30mls!

The drs been in and told me it is all ok to go! Amazing! I have 20 mins to get changed and on the train. Time to run!!!!

Im on the train 😀

Causing all sorts of carmage though. The dr has said it is fine, go and enjoy myself. The midwives are telling her I need to be discharged and then readmitted. Have been told to leave it with them., but to go and enjoy myself and it will be fine.

Just pulled into the carpark for the wedding and was rung by the midwives. They have said that I am bedblocking and not obviously fit and well so they are discharging me. I asked them to wait until I got back as I will literally be just over 2 hours. I then said that I was supposed to be moved into accommodation if i was being discharged before him, but they couldn’t seem to grasp this. They needed the bed and had an excuse to discharge me (despite being told it was ok to go) it’s also not their issue that I was supposed to be given accommodation if baby was in but I was ready to be discharged.

My doctor is very apologetic, but it’s not her fault. The level of care on this ward just seems to be non existent. I spoke to their midwives yesterday and they said it would be a good thing for me to go, they are now back tracking. If i had known this was going to happen I wouldn’t have come. I was only going because I was told it was going to be fine. Now I’m going to be sent home with nowhere to stay in London and my little boy is still in NICU without me. Gutted doesn’t even cut it. I have cried a lot. Everyone keeps asking how I am and I just want to cry.

Midwives are actually causing stress and upset which is making me medically unfit for discharge. If they had told me I would be discharged I either wouldn’t have left or I would have organised so I didn’t feel like I was being thrown into a situation that was not my choice. I’ve literally sat on a train, sat in a car for 2 mins and sat in a church. I’ve done more exercise and walking around sat in UCLH than I have done today. Absolute bloody nightmare. So annoyed.

Plan of action is to go feed our baby now (get in at 5pm) then we can get some food ourselves and then head back to the wedding when we want to/if we want to.

In essence midwives on their own agenda are ridiculous. The whole time I’ve been on the ward its been me chasing pain relief, things they have told us they were doing. As soon as they want something they cant wait for 2 hours. Yet if I want my meds or catheter taken out or dressing looked at I have to wait well over that and call them 4 times just to get it.

Our baby isn’t being discharged yet either. He is on a jaundice lamp after his markers went up a little last night, he is still on antibiotics and will be for at least 5 days. But I managed to breastfeed and pump for him this morning so we are making positive steps. Just wanting to know about the Spina Bifida post operation checks now. Are his vents ok, kidneys and bladder doing what they should and back closure all ok? So much going on  feeling like I’m in a complete bubble of emotion and just need to sleep, but now to split my time between home and baby! Happy days!!!

On the plus side I got to see my brother get married. It was absolutely lovely and the venue was beautiful! Perfect day for the lovely couple.

I woke up bright and early this morning, managing to get in the shower and dressed. Down to baby by 7 to have a cuddle and breast feed. Then back up for breakfast and a nap. All before my husband got back!

We then went back down to see him again and spent most of the day there. My husband forgot my colostrum stash though so my Mum came up with the twins to bring it in. Which was lovely as it meant I got to see them and mum got to meet little man.

With my brothers wedding tomorrow I had to be cheeky and just ask if there is anyway I can get to it. They will see, if baby is being discharged to me then no chance. But if he is staying in NNU I should be able to go for literally the wedding and then come back. Weirdly have fingers crossed, not that he is still in NICU, but that I am able to go. I’d feel awful if I wasn’t able to. But to be honest, he is still on a jaundice lamp on and off so I doubt he will be out anyway.

I managed to pump this evening too. Only got 25mls but it is a huge increase on what I was getting and a start though!

Time to try and get some sleep and hope tomorrow I can disappear for 2 hours!

I didn’t sleep a wink last night. My husband decided to sleep downstairs with our monkey, but again got next to nothing sleep wise. They also didn’t come to do my bloods and I asked for pain relief and had to wait an hour for them, despite hitting the call bell 3 times and being told someone was coming. I was in agony. I was meant to be going downstairs to see him in NICU but the nurses weren’t sure if I could with my catheter in so were going to ring and ask then get me a porter. Didn’t happen, I just got left…

So when I was told would be mobilised by 11am so the catheter could come out and I could get down to my baby straight away, I didn’t hold out much hope. In fact they still hadn’t mobilised me when my dr came up to check in. She came back later and I still wasn’t up, so she decided to try and help get me up, but without painkillers. I sat at the edge of the bed and went very hot and light headed so decided it wouldn’t work without pain relief.

An hour later and I’ve still not had oramorph or been able to get up.

1PM and I am finally up! Been to the toilet and had my catheter removed. So get to go down and see our little munchkin now!!!! Can not wait, this has been excruciating.

Not been able to get him out for cuddles but seeing him was nice. It takes a little bit if adapting though. Initially I hated it and didn’t want to be in there, just wanted to get out of there. Seeing my baby hooked up to lots of machines and unable to give him a cuddle or hold him was just horrendous. But forced myself to stay and keep holding his hand. My husband said it was better to where he had been the night before. he hadn’t realised it, but the night before he had been in intensive care with one on one care from the nurses.

As I stood up, I bleed all over the floor, a gush that didn’t stop. The NICU staff were worried so ran me upstairs and called ahead to let them know. But the midwives weren’t concerned at all, told me to go to the toilet and they would come check later. Despite ringing the buzzer no one came to check, so I just made sure it didn’t continue and put extra pads in.

I was exhausted and so was my husband. He needed to get a good nights sleep so I sent him home to see the twins and have a proper sleep. Then knocked out myself sleeping through until 6am.

At 36+3 and weighing 6lb 12oz our little boy decided he couldn’t wait any longer to get here. He was delivered by the amazing team at UCLH who all came in especially and stayed ridiculously late in order to be around. Could not have asked for better people around me.

The caesarean was really straight forward. There was a slight bleed behind the placenta but this was entirely unrelated to the fetal surgery. We then got lots of cuddles whilst they fixed me up before being taken back into close observation bay.

All of us we having cuddles and lots of feeds for the bubba. His back looked amazing!

But he couldn’t shift his grunt so they were worried about fluid on the lungs and took him off for a few tests after 2 hours. Hi oxygen levels were at 80% (they want them above 94%) so they kept him in NICU for a while to put him on oxygen and see how he was doing.

Meanwhile I was shifted upstairs to the maternity ward. My husband sorted me out and then went down to see our little one. He has a comfier chair there too so has decided to sleep there.

My catheter can come out at 11am tomorrow and then I am able to go and see him again so long as he’s not here by then anyway! Fingers crossed all goes ok. His oxygen is already back to 93%, they did an x ray which has come back absolutely fine, so now just to get him off the oxygen and back here. They think it may be because he was stressed from the c section and cold.

He looks so perfect though and Daddy is so in love. The look on my amazing husbands face when he is cuddling him makes everything we have gone through more than worth while. My husband had been incredible as always, literally sailing through it all. Despite tears from me at several occasions from relief, worry, sadness at leaving my babies. Also he is kicking his legs like made, even when they touch his feet with wires. So I may be incredibly optimistic but fingers crossed. His back also looks amazing!

Now to tell everyone! Family included…they all think we were just kept in to observe him. My brother and mum know my waters broke, but have kept that hush from everyone else for now as we don’t want people worrying or messaging when we need to focus on our amazing baby.

God I can’t believe this has happened already, annoyed I didn’t make 37weeks. But unbelievably proud of how well he is doing.

 Bloods at 5am and catheter our at 11!

Get me out of here and back in time for my brothers wedding!!!

I am having my final scan at UCLH FMU before the cesarean section today! Very, very excited and the husband is really starting to get excited too, even talking to the bump!

This morning I had a little minor freak out that bubba wasn’t moving as much. I started to try and move him and get him to wake up to help calm my nerves but he didn’t want to. I didn’t want to tell my husband either as I didn’t want him worrying and just felt like I was overreacting. So I just had a little moment to myself and hoped it was all ok when we got to the scan. That combined with the headaches and slight swelling is just getting me paranoid.

With the twins I was so relaxed about it, but then had to have an emergency c section after t2 stopped moving and then I was diagnosed with preeclampsia at the hospital. So I think I just worry a little bit as soon as anything happens! But I need to try and remember all the positive things that have happened, not just the negative.

I also spoke to the lady who is collecting research around our story and how I feel throughout the process. She happened to send me an email to check in the morning which was lovely. Really don’t feel like the team could care more, they are all so invested in it. She believes the nerves and anxiety are completely normal, with the next step in the process around the corner I am bound to be worrying.

The scan went well, only one vent could be measured and it was at 11mm again, given the other vent was at 8mm last time it was measured and the sonographer felt it was all ok, I am really pleased! We have managed to get the vents down to almost normal range! Go surgery!!

The FMU midwife then wanted to check if I was being seen by my local midwife, which I was until she went on holiday and is now on long term sick. So they have asked me to get checked when I go to UCLH instead. She took my bloods, blood pressure and a urine sample to make sure the preeclampsia wasn’t making a comeback, but looks like I’ve managed to avoid it! She then set me up on monitor just to check babies movements after I mentioned the reduced movements and headaches. Again he’s a happy baby and all ok!

The lead lady that has organised everything throughout for me was a little bit concerned as she is going to be on holiday when we are due the c section so was trying to convince the team to do it the Friday before. I think she was worried she wouldn’t be there if it was the week after and had even asked her husband if she could go on holiday late again (I don’t think this was a popular request!) but I told her not to worry, we will still be in hospital when she gets back so will definitely see her anyway. Plus it’s my brothers birthday on the Friday, so would really rather not have it that day and still get to go! Now just to wait for her to confirm all the dates, we will go in for pre-ops on the Thursday before and then have the c section booked in the following week. That means there are literally TWO WEEKS to go and only a week until the pre-op!!!

Don’t know whether to scream in excitement or terror! On the plus side I’ve found an awesome little outfit for them…

Then we went upstairs to have a tour of the neonatal unit. Turns out that even if I get to 37 weeks and everything is all ok, they anticipate that the baby will be taken straight off of me and into neonatal. I will then go into the postnatal ward to recover, they will keep me in a bit longer than normal. She also said that she would anticipate the baby being kept in a bit longer than me, it shouldn’t need to go to GOSH if they are happy with the back but will need head scans, bladder scans etc to check everything out over a few days. This surprised me as I assumed that I would have the baby with me if I made it to 37 weeks. Another girl I spoke to who made it to 37 weeks had their baby with them and no time in neonatal at all. Think they must have changed protocol or something then!

I also asked about colostrum harvesting and if it is ok to start now as I want to ensure there are a few days of supply in case I end up having the same experience as last time and bleeding out/ending up in intensive care. I got given the all clear! So I have collected this evening and managed to get 0.25! Apparently this is good as you normally only get a few drops the first time. Very proud and will keep going tomorrow to build up the bubbies stash!

My mum was looking after the twins whilst we were out, so when we saw her and she asked out right about the date of the cesarean, I think she was a bit shocked when we said we aren’t telling people. We don’t want people messaging us asking or checking in when we will be dealing with loads of other things. When we are settled a bit and ready to message people I am sure my husband will send out a message to let everyone know of the little ones arrival. So top secret guys, sorry!