We left off last week with the girls being whisked away to the NICU. For several reasons, such as my recovery and the NICU being shut to visitors because of an emergency, I didn’t see the girls again until they were 24 hours old. If I think about that too much my heart hurts a little. But, obviously, I’ve had two years and nine months so far to make up for that.

The girls were placed in the SCBU (special care baby unit), first in the high-dependency room and then the lower-dependency room. I remember walking in there for the first time and a nurse pointing at which incubators held my babies. They were at opposite ends of the room to each other which was strange, and a bit upsetting, since they had been so close internally.

The girls started off with breathing support, an IV, heart monitors on their chests, and a pulse monitor on their toes, so they were covered with wires and wearing tiny baby nappies that looked massive on them.

I remember that the first time I went to visit the girls, I fainted outside the ward because I made the mistake of standing up for a bit too long just a day after having major abdominal surgery. Props to the receptionist who managed to catch me! Thankfully Sam was in with the girls so he was able to come out and make sure I was OK. Once I was back on the maternity ward I was in an awful amount of pain because my bladder was essentially frozen so they re-catheterised me and the relief was almost immediate. It meant that I had to walk down to the NICU with a bag of my wee strapped to my leg though.

It was very strange being up on the maternity ward with the girls down in the NICU. I was on a ward with a couple other NICU mums so there were no babies, which was a relief as I didn’t particularly want to be woken by other people’s babies, and I got to chat to them about our shared experience. I was torn between feeling exhausted and needing to recover from major surgery and desperately wanting to be with my babies. The midwives and health care assistants who were caring for me were gold standard, despite the crazy busyness of the ward. I’ll forever be grateful for the compassion and care they showed me in those first few days of recovery. One time I cried because I didn’t like the food on the menu and they kindly found me an alternative, like the diva I am.

Each day my recovery improved so that by 9th February (so 4 days after the girls were born), I was discharged home. Leaving the babies in the hospital and driving away was bizarre and heartbreaking, though we knew they were in the best hands. I returned each day thanks to my kind friends and Sam driving me there (as I couldn’t drive post C-section), so I didn’t leave them too long and Sam went to be with them every evening.

I didn’t first change Bethany and Lily’s nappies until they were a few days old and it took some guidance and maneuvering to avoid all the wires! Oftentimes I would let the nurses do those kinds of jobs so I could save my energy to focus on feeding and bonding with the girls. Initially, the girls were tube-fed using my colostrum which I managed to harvest (gross) when I was waiting for my C-section. Their tummies were only really tiny so they couldn’t manage much, and the IV was helping keep their fluids up. They also had vitamins through their IV drip each day, and other things that now I can’t remember. Eventually they would get my pumped breast milk through their tubes and were encouraged to suck on a dummy whilst that was happening so they connected the two sensations. Since the girls were fed using a syringe and tube, both Sam and I were able to feed them in the first few days, as well as the nurses.

Ah, pumping. The least glamorous part of this process (not that anything was particularly glamorous, see bag of wee above). I was loaned a hospital-grade pump from the NICU which was amazing as I could take it home and it did make it easier and quicker. I had to pump at certain intervals during the day and set my alarm at night to pump once (much kinder than a newborn’s wake-ups!) I was fortunate to produce a crazy amount of milk which the NICU nurses often commented on as I stored it in their fridge. Each morning I would rock up with my cool bag full of milk to add to the fridge on the ward. There were so many processes of storing and labeling the milk, that I had totally forgotten until now. Like any difficult situation, you just get on with it and things that first seemed alien become second nature.

Before I was discharged home, I breastfed Bethany for the first time and she did really well. I’ll talk about the challenges of learning to breastfeed in the NICU a little later. When I was discharged, the girls were 4 days old. Lily was still on breathing support so I wasn’t able to feed her and they were both under treatment for jaundice (under a blue light). Bethany had been weaned off her fluids from the IV and they were hoping to do the same with Lily too. But they were both in individual incubators in the high-dependency room. So they still needed a decent amount of support.

The next few days saw the girls being weaned off breathing support and the liquids through their IVs as well as having their heart monitors removed. So gradually they were less encumbered by wires.

Each day I would try to put them to the breast to feed, though because they were so tiny and born so early (at 34 weeks), they were often too sleepy to feed. Credit must go to the incredible NICU nurses who helped me position them and myself so I could comfortably feed them with their teeny tiny mouths! I don’t think our breastfeeding journey would have been anywhere near as successful as it has been without the support of those nurses. I personally think every new mother should have days of breastfeeding support whilst in the hospital. I had so many challenges breastfeeding Caleb because no one came around whilst I was on the ward to show me how to do it. Thankfully I had the wonderful organisation BABIES in Winchester who supported me so well at home. The challenges with the girls were many: sleepy babies, tiny bodies and mouths, being in a strange environment, my boobs being too large (!) But we kept trying again and again. I was often limited in the length of time I could keep them out of their incubators, especially when they were under phototherapy for jaundice, so I was not able to have the amount of practice a new mother normally has with her baby. And there were two of them!!

Lily struggled a lot in the NICU with tolerating her feeds and consequently lost a lot of weight, going down to 4lbs. She also occasionally seemed to have heart problems so had a few ECGs and numerous blood tests. I’m so thankful for the wonderful doctors and nurses in the NICU who reassured us, kept us informed, and cared for the girls so well. There were plenty of other babies on the ward who needed a lot of support. One baby was born at 30 weeks and was so tiny, then there were several sets of triplets born in the few days after the girls were born! It was an incredibly busy ward. There were also the higher dependency intensive care wards which cared for the very ill babies. Whilst we never saw those babies, my heart was with them and their parents each time an emergency alarm sounded that led doctors to go rushing into the room.

When the girls were just over a week old, they were moved to the lower dependency room of the SCBU and put in a cot together!

As you can see in the photo, they were fully wire-free apart from the pulse monitor on their toes and their feeding tubes. It made taking them out for cuddles and feeds so much easier! It also meant Sam and I could hold them both at the same time which was a joy!

Occasionally the girls needed to receive phototherapy for jaundice again so they would both be squeezed into the same incubator for that. They were regularly weighed, and orally given vitamins and I would practice feeding them daily.

Whilst we were initially told the girls would be in for at least 2 weeks, we were obviously hoping it would be for less time than that. However, their stay in the hospital did end up being two and a half weeks. A day before bringing the girls home, Sam and I moved onto the ward and slept in a room there to get used to caring for the girls ourselves at night time. That was an experience in itself but was a helpful in between, as we got to prepare to take them home whilst still having the doctors’ and nurses’ support.

I have to admit that the closer we got to taking them home, the more nervous I got about it! We would be sent out alone with no nurses to help with feeds or changing nappies, no one to ask questions of, and no one to take over their care. Of course, it was still COVID time so we also couldn’t rely on family support. Our family couldn’t meet the girls until they were about a month or two old. We were truly on our own! (We weren’t, we had our faithful Father and a wonderful college community who kept us fed and well-stocked in nappies).

Thanks for joining me on this journey, it’s been wonderful and cathartic to look through my journals and photos from that time. It’s hard to believe those tiny babies are the same little girls currently hurtling around our living room. They are resilient, beautiful, and strong and we thank God that he blessed us with them, as crazy as they are. I hope you have found reading these posts eye-opening and interesting. If you ever are, or ever know, a NICU parent, I hope this post in particular is a helpful insight into what it’s like.

We left off last week with Sam and Caleb dropping me off at the hospital. What followed were a few days of waiting for a C-section. It was classed as an emergency, but other emergencies took precedence, including someone giving birth in the car park!

I had never been away from Caleb so to have a few days of resting in the hospital unable to see him was odd but quite relaxing! Sam did bring him to see me once and also came alone so we could grab a drink from the hospital Costa but otherwise I was sitting on the bed, reading, watching things on my iPad and occasionally being monitored. A lovely consultant from the NICU came to see me to explain that we could expect the girls to have a couple of weeks in the SCBU (Special Care Baby Unit) because they were only going to be 34 weeks when they were born. This helped calm my anxiety, having at least an idea of what it might be like once they were earth-side.

The day arrived, thankfully Sam managed to get to the hospital, find a parking space and have a negative COVID test (all things causing me great anxiety at the time, as if it was positive he wouldn’t have been able to join me) and we were action stations.

I won’t share much about the birth because I found it quite traumatic. I was hoping the screen could be put down so I could see what was going on but I didn’t ask, and they didn’t ask if I wanted it, so it just didn’t happen. I still remember the anaesthetist though, he was the member of the team who spent the most time talking to us. He was really lovely, caring and understanding and helped to calm our anxieties. Speaking of the team, there were a LOT of people in that room! The anaesthetist, a couple of surgeons, their assistants, midwives, two NICU nurses for each twin, probably a bunch of other people I’ve forgotten. I’m so SO grateful that the twins were born at a time during the pandemic that partners could be in the operating theatre. I can’t imagine how frightening the experience, which was already so strange, would have been if Sam hadn’t been there.

Bethany came out first and went straight to resus, apparently it took a little bit of time for her breathing to be ok. Lily was a bit more tricky to get out and then 5 minutes later, arms stretched, she made her way out. She also spent some time on the resus table. Thankfully Sam was able to stand with them and took some photos on his camera to show me as my only view was the ceiling and the blue screen. I would strain to hear them crying and had no idea what was going on. Once both babies were checked over and wrapped up, I got to briefly touch them before they were whisked away to the NICU where I didn’t get to see them again until 24 hours later. Mercifully, Sam got to see them and cuddle them that night and took plenty of photos for me to see.

The 5th of February 2021 was a wild day that I’ll never forget. I’m so grateful that I was able to give birth to the twins in a safe, hygienic and FREE environment. Praise God for our NHS and for the incredible doctors, nurses, midwives, health care assistants, anaesthetists, porters, all the people who give their lives to care for us.

I’ve been looking through my journals from the time I was pregnant with the girls to remind myself what it was like and there is so much that I’d just forgotten about! It was an anxiety-ridden pregnancy for a number of reasons, not least it all being within lockdowns. I’m not going to lay bare all my thoughts and feelings during that time as, as you can imagine, they were varied and plentiful! But here’s an edited version of our pregnancy journey that I’d love to share with you…

I fell pregnant during the first lockdown, when we were convinced the whole COVID thing would be over soon, certainly by the time the baby was born… How wrong we were! But anyway… It felt different from my pregnancy with Caleb very quickly. I joked with Sam that maybe it was twins because I started showing early on and felt much more nauseous earlier and for longer, though I did put it down to it being a second pregnancy at the time. We just laughed it off and didn’t think much of it.

It was when we went for our 12 week scan that the truth was revealed! At first when the sonographer was scanning my tummy, only one baby was showing on the screen and it all looked good. However, she then moved her probe and exclaimed “Oh! There’s another one!” After a quick check to make sure there weren’t any more hidden away, she checked baby two and thankfully everything was ok. Meanwhile, Sam and I were having mini existential crises involving thoughts of “how will we cope with twins?” and “we’re going to need to get a bigger car”.  For a while we sat in stunned silence as the sonographer filled in the necessary paperwork and sent us on our merry way as if nothing out of the ordinary had just happened.

Thankfully, on that very day, we had picked up a double buggy from someone off Facebook marketplace, thinking one of the seats would be for Caleb. Alas, no. 

Immediately I recognised that were a number of expectations I had had of this second baby that would need to change. Such as the simple joy I had envisioned of taking Caleb to the park with a little baby strapped to my chest… Not so easy with two.

As we left the hospital, I was feeling mixed emotions of elation and terror, you’ll have to ask Sam how he was feeling! We’d left Caleb with our close friends Hanna and Simon, so, lucky them, they got to see us in our stunned, pale states. I showed Hanna the scan photos and just pointed at where it said “Twin 1” and she got it straight away, squealed and gave me a hug. Simon took a little longer…

So then it was on to telling our family! What with it being lockdown, we sadly couldn’t wait to tell our family the news in person so we had to do it over the phone. I messaged my parents and brother saying it was twins and my dad phoned me to ask if I was serious! When I told him it was true he was just as stunned as we were! Mum was very excited, but also there was a lot of chat about the extra risks of a twin pregnancy and the craziness of life that lay ahead.

Because the twins were identical, ie sharing a placenta, from 16 weeks I had fortnightly scans.  As this was during COVID, most of the scans I went to by myself, coming out with reams of photos that I thankfully didn’t have to pay for, in awe that they could always tell which twin was which. It was during these scans that measurements were taken, of the twins and of the amniotic fluid. A few worrying scans led to more scans, one even at a different hospital with a specialist. It was a very different experience to my pregnancy with Caleb where I only had the 12 weeks scan, 20 weeks scan and a random growth scan near the end. This felt a lot more medical, serious and anxiety inducing, often unnecessarily so when subsequent scans showed there was nothing wrong.

One of the concerns at the time was the possibility that the twins might have twin-to-twin syndrome, a serious condition that in the worst cases is fatal for one or both twins. This led to multiple extra scans, blood tests, and conversations with consultants. What it actually came down to was someone made an error in calculating the percentage of weight difference and once that error was realised and corrected, the concern was almost eradicated. I remember being so frustrated at the time, having all that worry being down to a mistake someone made along the way. After that mistake was made I was then slightly wary of any comments made about the babies’ sizes, at points being convinced they were measuring and comparing the wrong twin. That was really difficult, as I had to simply trust that these professionals knew what they were doing and had the babies’ best interests at heart.

I can’t talk scans without mentioning the 20 weeks one! I was silently hoping it would be two girls a) because I would love a baby girl and b) because I wasn’t sure how I’d cope with three boys! Thankfully of course it did turn out to be girls, though Sam does to this day question what my reaction would have been if it had been boys! I was very excited.

So it was at an extra scan at a point where there had been further concerns about one of the twins’ size, when I was 33 weeks, that the doctor doing my scan saw in my notes that one of the twins hadn’t been growing as expected and saw on her screen that twin 1’s amniotic fluid was a little low. She stepped out to phone the consultant managing my pregnancy then came in and confirmed that they were going to admit me and get the twins out as soon as they could! I had not been expecting this, I was expecting to go to at least 36 weeks, which is when they normally deliver identical twins. I shakily phoned Sam, drove home to pack a bag then Sam and Caleb drove me back to the hospital. We were all feeling very emotional and stressed, it was not quite the exciting time you expect when you’re about to have your baby. The scans were suggesting something could be wrong so we really didn’t know the journey that was ahead of us.

Tune back in next week to find out what happens next 😉.

A lot of you reading this will remember the many twists and turns we had during this pregnancy, and you faithfully prayed for us and looked out for us. Thank you ❤️.

I hope you read that title imagining me clicking my fingers to an Italian-sounding soundtrack. If you don’t get that reference, I’m glad for you because it is seriously overdone.

Here is a list of things that we use daily in our house to help make the days a little easier for Caleb (diagnosed ASD) and us as a family. Hopefully doesn’t need saying but these are not ads or affiliate links, I’m not getting any money for these recommendations! Just passing on what works for us in the hope it might help you and/or your family too.

• Visual timetable

At first, we found that this kind of picture timetable didn’t really work with Caleb. They didn’t work at his preschool, but they did with his support worker. She used them to list all the activities they would do together and each time they finished one, Caleb would lift off the card and pop it in a post box. We have started using them in the morning and at bedtime and a visual reminder of the routine does seem to help him, even if it doesn’t magically make things easier for us. We use these, but there are many options. I know they use them at school too, and if it removes any anxiety from Caleb’s day, we feel it’s worth giving it a shot.

• Social stories

Caleb’s teacher uses a programme called Widget to create social stories for Caleb and they have been revolutionary in helping Caleb settle into school. He loves reading his “Caleb stories” and knowing exactly what is going to happen and how he needs to behave has really helped him transition into school. The teacher wrote him a story for the Harvest festival at church and the nurses coming in to give the flu vaccine. This “kind hands” story is one of his favourites, he recites it every day! You can buy a license for the programme but it’s quite pricey. It’s worth checking whether your kid’s school has it or something similar on their system.

• Lap tray

Caleb sits on the sofa in front of the TV to eat his meals. Is it the best option? Probably not. Does it mean he eats happily and calmly? Yes. In lieu of a table, we bought him a lap tray to have his plate on. Again, it’s what works for us and our family.

• Hat

It is rare to see Caleb without his trusty Lightning McQueen hat. It has definitely been a comfort object for him for about a few years now. There’s something about the gentle pressure on his head/ it being his favourite character/ the protection and hiding place it offers him. Thankfully the school is really happy for him to wear it even though it doesn’t exactly fit uniform requirements! He’s pretty good at taking it off when they ask him to and then he’ll just go and put it back on when he can. We do notice that the days he hasn’t got it for whatever reason are more tricky, and we have had to go back to get it from home and bring it to school. But if it helps to keep him regulated and happy then it’s all good.

• Screens

Screens are demonised in modern parenting but, in our house, we give the kids unlimited access. They’re not on it every minute of every day, but when they ask for videos (they watch YouTube Kids on tablets), we let them watch them. Occasionally we thrust videos on the kids when we just. need. a. break. Occasionally they don’t want to watch them (so we groan internally). The benefit for Caleb is that screens help him regulate. We just decided to extend the unlimited screen use to the twins as well to make it fair for them and to make our lives easier. Honestly, they don’t spend ages on them and they’re always happy to surrender them when we say it’s time. Maybe the unlimited access takes the novelty away.

• Buckets of patience and dollops of love

Living with a child who struggles daily with life can be incredibly challenging for us as his parents. It’s awful to watch your child suffering in any way, especially when you feel helpless to make them feel better. Therefore, we need to take a lot of deep breaths and have endless patience so we don’t add to his anxiety and stress. That and lots of physical affection, encouraging words, and lots of fun and laughter help to bolster Caleb’s mood and self-esteem. We don’t always get it right, we do lose our patience and get cross. We are human, after all. But I like to think that, even if our house is full of screaming and tears a lot of the time, it’s equally, or hopefully more so, filled with love, laughter and fun.

Do you use anything in your house that helps your neurodivergent child?