Our first visit to the NICU –  Meeting our little miracles

Lying on the operating theatre with my husband holding me close, hearing the beautiful little cries from our wee warriors. These are moments I will cherish forever. Our miracle twin boys battled twin to twin transfusion syndrome and made it through life saving laser surgery at 21 weeks gestation. Against all odds they were born crying and able to breathe for themselves.  

Benjamin was born first, weighing in at a teeny 3lbs and 6oz. He was so delicate and had the most beautiful little round face and button nose. Harry followed very quickly, a featherweight at a minuscule 1lb and 14oz. He was perfect but so so tiny and vulnerable looking. My first sight of the boys were through my husbands photos as I lay on the operating theatre and the surgeon completed the Caesarean section. I was dying to hold them close and cuddle them in to me but once they were stabilised, they were brought straight to the neonatal intensive care unit (NICU).  

  

After I got out of theatre, two of the doctors from the NICU came up to the recovery ward. I will never forget the huge grins they had on their faces. They had anticipated two very sick babies who would need rushed to ICU and put on a ventilator immediately. But the boys were doing better than they could ever have expected – they were both breathing on their own! They were very early and very delicate and they would need a lot of special care but they were doing so well despite everything they had been through.

Nothing could ever prepare you for the emotional whirlwind that is meeting your newborn for the first time. Imagine that and then build in many months of worry, an emergency Caesarean section, babies being born 10 weeks too early and lots of post operative pain killers! I was a mess. Tears spilling out. I don’t think I have ever experienced such deep joy and thankfulness. My prayers had been answered and my little babies were with me. Our little family had just doubled in size!

There were a lot of wires. A lot of beeping machines. A lot of nurses for a tiny little ward with only 4 incubators. But it was warm and friendly. The nurses were so so gentle as they worked away with our precious little bundles. Both B and H had little hats on, with Velcro attachments to keep in place the little mask over their nose, which were supporting the boys breathing with some pressurised air. They both had 3 little heart monitors on their chest, an oxygen saturation probe on their foot and a drip in their arm. I was terrified that I’d dislodge something important.

Mr C and I were dying to hold our baby boys but on that first night they were too weak and fragile – they needed to recover from the trauma of the birth. We had to content ourselves with holding their teeny little hands and staring at their beautiful faces through the portholes in each incubator. Just like that, we were mummy and daddy. I was totally in love already.

The next morning, Mr C wheeled me up to the neonatal unit as soon as I could persuade the nurses that I could walk a few steps! Our little boys had had a good first night. Their little personalities were evident from Day 1. Chilled out little B spending the majority of his time sound asleep, curled up in a little ball and our wee warrior, Harry, wide awake and kicking away with his tiny sparrow like legs.

  

 
From cuddle number 1, the twin guilt started! As soon as I had one of my little beauties snuggled into my chest, I was looking at the other one and feeling bad that I wasn’t holding them too! (This was despite the fact that they were blissfully happy, purring away in Daddy’s arms.) The nurses had the perfect solution and I got to snuggle them both at once – they were tucked down my top and lying on my chest kangaroo style. These first cuddles were so so special.
 

How were your first moments with your newborn baby?

Please share this post if you enjoyed reading it!

I’m linking this post up to #FabFridayPost and #MarvMondays

Ethan & Evelyn

.

My Twin Pregnancy Part 4 : The Boys Arrive

29 weeks pregnant. My bump was huge. Everything was an effort. Putting on my own socks and shoes was not an option. I was up all night for bathroom trips – sometimes it felt like every 20 minutes. My bladder was just being constantly squeezed. The only comfortable/bearable sleeping position I could find was with my V pillow in between my legs and under my bump and my husband ‘spooning’ (!) my back to support it!! Poor man! Twin pregnancies are not easy on your body. 

Our 29 week appointment followed the usual harrowing routine (see Part 3!). My little twin was making very slow progress – his growth seemed to be coming to a standstill. Although at the time the consultant thought that the blood flow to my placenta was still good so he was keen to try and let them grow for as long as possible. We were to be monitored even more closely for the next few weeks and as a precaution I was started on a course of steroid injections that day. If my little twin didn’t makes significant progress pretty quickly, there was a chance that I’d need to deliver the boys very early and the steroid injections would help to mature their little lungs. 

I had a second set of steroid injections later that week and about 24 hours later, I was back in the Emergency Obstetric Unit hooked up to a CTG machine to monitor the twins’ heart rates. Over the course of the previous day I had been feeling the babies move less and less – I was trying everything – glasses of ice cold water, sugary food, lying down. But there just wasn’t as much movement as normal. The twins never really had a distinct pattern of movement – I think it’s quite common for some babies to have quite regular awake times but this hadn’t been my experience. This made it harder to tell if there was something wrong when I thought there was reduced movement. The on-call Doctor scanned the babies and she seemed to think that the blood flow to the placenta was compromised. She reckoned that the placenta would only provide adequate nutrition for about the next two weeks. I was admitted to a maternity ward for 3 hourly observations. I spent that next 2 days being regularly scanned and closely monitored. 

On Day 3, Mr C and I made our way to the consultant’s room for our regular clinic appointment. The consultant did the mandatory scanning and we sat down to talk next steps. Our little twin was not growing. But his big brother was doing well and growing at a good rate. Delivering the boys at 30 weeks would carry huge risks for both babies as they were still both very tiny. It was a hard call for the consultant. Given the reduced fetal movement, the rapidly deteriorating blood flow in the placenta and the fact that our little boy’s growth had stalled, the decision was taken to deliver the babies that afternoon by emergency caesarean section.   

The reality of what was about to happen was terrifying. Our little tiny babies, that were supposed to have another 2.5 months in my tummy, were about to be wheaked out of their little cosy comforting environment and into the sterile, gloved hands of masked up doctors. I wanted to protect my babies but I couldn’t keep them safe anymore.

They put me on a magnesium drip for an hour before the caesarean to help protect the babies’ brains. It made me so hot and so nauseous – maybe that was no bad thing as it took my mind off what was about to happen. Up to that point I’d been so obsessed with the TTTS and how the boys were doing, I hadn’t really thought about the ‘getting them out’ part of the process. Although as soon as they were diagnosed with TTTS, I knew we’d have to have a Caesarean section. Birth plans went out the window!

 As the nurse was doing all the not so lovely things to prep me for the surgery, two of the neonatal doctors came to talk about the birth. They were preparing us for the worst and with very grave faces told us that they expected to be dealing with two very sick babies – my heart sank to the floor. They warned us that we may not get to see the boys as soon as they were born. Despite everything I knew could happen, I still wanted to be hopeful, to believe that my babies would be perfectly healthy. Sam held my hand and we prepared to go into the theatre.

I knew there would be quite a few people in the theatre but I don’t think I was prepared to be surrounded by such an audience… There was two anaesthetists, two obstetricians, four theatre nurses, two teams of neonatal doctors and nurses and a handful of student doctors observing!!!! As the spinal injection kicked in and my body numbed, the anaesthetic made me feel really sick. Wretching your guts out in front of about 20 onlookers is not fun. Thankfully the anaesthetist gave me some wonder drug which made the nausea disappear as quickly as it arrived.

Then it all started. I should really get Sam to write this part as all I could see was a green curtain. Unfortunately for him, he saw the entire operation reflected in the huge overhead lights. I don’t think it was pretty. About 5 minutes in, the obstetrician lifted out the first baby – she announced ‘I think it’s the small one.’ Before he could be handed over to the neonatal team he let out the most beautiful little sound I had ever heard. My heart sang. My baby was breathing. And crying. He was ok. Then the obstetrician said ‘actually I think this is the small one’ and handed baby two to the other neonatal team. The next 30 seconds seemed to last forever and then he let out a little cry and I was totally overcome. My littlest baby was here, he was breathing. My beautiful little miracles. I just wanted to see them, to hold them, to cuddle them into their mama.

The doctors were confident that the babies were stable pretty quickly and Sam was able to go and see his beautiful sons. He took some video and lots of photos so that I could see my little miracle boys while the surgeons closed me up. My babies were so beautiful – perfect little boys. They looked so very delicate. Little Harry was 1lb and 14oz and his big brother, Benjamin was a not so hefty 3lbs and 6oz. My little miracle babies were here. They had defied the odds and we were so so thankful.

Linking this post up to Marvellous Mondays

My Twin Pregnancy Part 3: The waiting game

So I was 21 weeks pregnant with identical twins. We’d just returned back home after an impromptu trip to London for surgery on my placenta which had saved the boys lives. The next weeks and months went something like this:

Go to hospital appointment. Sit in waiting room nervously wringing hands and tapping feet. Alternate between extreme optimism and crushing pessimism. Worry about how on earth we’ll cope looking after two new babies. Feel my world blacken as I contemplate losing my babies. Get called into the consultants office. Exchange pleasantries and do the chin up routine. Get on the bed. Gel on and scanning starts. Wait for the heartbeats. I hear them. Relax. Then the measurements start. Wait nervously to hear how the babies are growing and if the twin to twin transfusion syndrome (TTTS) has returned. Get off the bed for ‘the chat’ with the consultant. He tells me that there is growth but it’s very slow and my little twin is very very small, half the size of his brother. I try and think of all the good TTTS stories I know. I remind the consultant of them. He is cautious. He reminds me of all the risks. He’s trying to prepare me for the worst. We schedule another appointment and I leave. I worry for 6 days. Then the cycle repeats itself. Again. And again. And again. For 2.5 months.

The in-between six days were hard to fill. Each week was measured in the number of days from the last scan and to the next scan. I’d been signed off work due to the risk of early delivery and I had too much time to fill every day. What made it worse was that the SPD which has started at about 15 weeks, was getting more painful and I was not able to walk any distance at all. So I spent way too much time lying on the sofa in my living room. I usually love getting lost in a book but I just couldn’t focus on anything. My mind wandered back to the boys pretty much constantly. I googled and googled and googled. That didn’t help much.

I passed a lot of time reading twin pram reviews – this was a great distraction! I’ll share my expert (!) opinions soon and believe me, those opinions are very very well researched. I did become scarily obsessed with making sure we made the very best purchase. I read up on twin baby carriers – I’d always fancied doing the baby carrying thing. But two babies side by side on your front? I think I’d be seeing an osteopath very soon after that.. I watched YouTube clips of mums demonstrating tandem breastfeeding twins. Now they really are super-mums. I read lots of parenting books and persuaded myself that we’d stick to one of these rigid baby routines and our babies would be sleeping through the night by 8 weeks! Oh the naivety!

Everything I did and thought about was overshadowed with a deep seated, sickening fear that my babies wouldn’t grow and thrive and that I’d never bring them home. Committing that sentiment to writing is difficult. It’s really hard to forget these feelings and even now, almost a year on, I frequently feel overwhelmed with the fear, anxiety and pain of this time. Often it’s the oddest things that make these feelings rush back. Every time I sit down to write my twin pregnancy posts, I end up with panda eyes and a heavy heart. Then I look over at my miracle boys enjoying their morning nap and my heart bursts with joy.

I’m linking this post up to #FabFridayPost

Ethan & Evelyn

My Twin Pregnancy Part 2: The dark days…

So this isn’t an easy post – it’s about what happened next. What happened immediately after the grand unveiling of baby number two. The midwife managed to get us slotted in to see the consultant on the same morning. A few hours later I was on another hospital bed with more jelly getting squeezed unto the bump. Only this time we had about 6 onlookers with the consultant leading the charge, the other sonographer watching on (I assume to make sure she hadn’t got it wrong!), two midwives, the ward sister and someone else who looked rather official. It was quite the party.

Once again there was lots of scanning. Every possible angle and measurement was captured. We saw two beautiful little heartbeats. We were quite definitely having two babies. Gulp. The consultant wiped the jelly off my bump, helped me off the table and we took a seat by his desk. Then things got very scary.

Before he said a word we knew something was wrong. He had that look that I’d only ever seen on TV – it was always followed by a serious discussion. I could hear my heart pounding and I was squeezing Sam’s hand tightly.

He confirmed that we were expecting identical twins, explaining that they were mono-chorionic di-amniotic or MODI twins. This means they shared a placenta but had their own amniotic sacs. My heart was beating faster and faster. He explained that sharing a placenta can cause problems and he suspected that the babies had a condition called twin to twin transfusion (TTTS.) I’d never heard of TTTS before.

The consultant explained the condition but to be honest all I heard was ‘surgery in London’ and ‘30% chance of survival.’ We were in shock. We had to go back in two days time for a follow up scan to see if the diagnosis could be confirmed.

When I got home, I did the worst possible thing. I knew I shouldn’t but I needed to know more. I googled. The results made terrifying reading. If the babies did have this condition, they were both in serious danger and action was needed very quickly. I read article after article – there was hope and we did come across survivor stories. But the risks were high and the odds weren’t good.

TTTS is a condition which affects a small percentage of identical twin pregnancies. Identical twins who share a placenta (monochorionic) have blood vessel connections inside the placenta. TTTS happens when there are too many blood vessel connections in one direction, causing an unequal flow of blood between the twins. This is very dangerous for both babies – with the donor twin receiving too little blood and failing to thrive and the recipient twin receiving too much blood, putting it at risk of heart congestion.

We got a call the next morning from the consultant asking us to come in for another scan right away. By midday we were booked unto flights to London for that evening and had an appointment with a leading professor at a big London hospital for 9am the following morning. The intention was to perform laser surgery on my placenta that afternoon. I couldn’t have dreamt up a worse nightmare.

We hardly had time to think about what was happening. We headed home to hurriedly pack some clothes. I panicked that I had no time to buy the obligatory new pyjamas required for hospital stays. (Because that was worth panicking about.) Mum stepped up to the pyjama plate and arrived at our door in super quick time, having left work, driven the 35 miles to our house and somehow magically acquired two pairs of huge twin bump accommodating pjs en route.

Mum was shocked when she saw me – the TTTS had caused a huge fluid build up in my womb and all of a sudden I looked like I was 40 weeks and not 21 weeks pregnant. We all assumed the bump was getting big so quickly because it was a twin pregnancy but actually the TTTS had become more acute and was causing a huge build up of fluid in my womb.

I was on autopilot. I just wanted to get there, see the professor and get the treatment that would give our babies the best chance. We made our way to the airport and were en route to Heathrow very quickly.

Early the following morning we made our way to St George’s hospital in Tooting where we had an appointment with a leading professor in TTTS. We had some preliminary scans with one of the registrars working under the Prof – she was a lovely Portugese obstetrician and she made us feel at ease despite everything that was happening. When the Prof saw us he didn’t sugar coat the situation. The babies had stage IV TTTS which was very advanced and he told us that without surgical intervention we would lose the boys within days. We knew that with surgery the boys had a 30% chance of survival and if they survived the surgery there was a serious risk of miscarriage, neurological damage and intra uterine growth restriction. We had no choice but to sign the waiver and proceed.

When I think back on this day, just under a year ago, I can feel the bile rising up my throat. Some days I can talk about the experience coherently and then others I’m caught off guard and get choked up with sobs. Proper uncontrollable sobbing. Although on the day itself we experienced a real sense of peace about the whole awful situation that I believe was truly God given. We felt comforted and upheld. I have no doubt that this was as a result of all the many friends, family and people that we didn’t even know that were remembering all four of us in prayer.

We decided that morning that we wanted our little boys to have names – twin 1 and twin 2 seemed so impersonal. Our little twin was to be called Harry and his big brother, Benjamin.

About 4 hours and lots of needles later, I was brought into the operating theatre. I was awake throughout the procedure and Sam was at my side in his rather comical looking scrubs (made for someone 3 ft shorter!). He looked like the Incredible Hulk bursting from the confines of his clothes!! I was lightly sedated but conscious – although the drugs made me feel like I’d had quite a few glasses of champagne. Sam said I was grinning from ear to ear and smiling inanely at the army of doctors and nurses in the operating theatre! The laser surgery was laparoscopic and they passed the laser and a camera through a small incision in my abdomen. The surgery was truly terrifying – worse for Sam as I only remember it through a winey haze. The camera showed the whole procedure on a large screen. This was the first time we saw our beautiful babies properly. At 21 weeks they were absolutely perfect – we saw their little legs kicking and their cute little fingers with the tiniest little nails. The picture was so clear. I was besotted already.

Before the laser surgery could start, they needed to drain excess fluid from my womb – about 1.5 litres was removed. You could hear it splashing on the sterile floor as it overflowed the container. Then the laser started – we saw the red hot laser cut through the vessels that linked the babies, sending up a little plume of smoke inside my womb. The whole experience was very surreal.

After the surgery, I was brought up to the maternity ward to recover overnight. After the pain relief wore off I was very sore – I felt like my womb was contracting and I was terrified that I was going into labour. The girl in the bay next to me was in the early stages of labour so as you can imagine there wasn’t going to be any sleep happening that night. I often wonder why they didn’t put me on a gynaecological ward. It seemed wrong that I was lying beside a labouring woman during the crucial 8 hours post op when the risk of me having a miscarriage was at its peak.

Sam was allowed to stay until about 11pm and then I had to get through a long night on my own. It’s always a relief in hospitals when the first signs of morning scurrying starts. The long night of worry was over. It was Sunday morning and I had been told that it may be Monday before the follow up scan to see if my babies had survived. Then at 8am that morning, the Professor arrived at my bed. The wait was over. He brought me to the scanning suite and within minutes had found two heartbeats. I was overjoyed and my heart was full of thankfulness.

The operation saved the boys lives. But we faced a long and hard road ahead of us, with no guarantees. But that day we celebrated. We had jumped this hurdle and our beautiful boys were fighting hard. We had everything to hope for.
I’m linking this post  up with the #coolmumclub

Mummuddlingthrough
20 week scan

My Twin Pregnancy Part 1: And there’s the other pair of legs…

My twin pregnancy was far from textbook. It didn’t follow any of the rules. It was a scary time but it brought me my two precious baby boys. It’s taken me a while to get here but now I want to remember and share the turbulent journey that we’ve been on. This is the first in a four part series about my twin pregnancy.

18th November 2014

I’d been counting down the days until the ‘big’ scan – I was finally lying on the hospital trolley in a warm, dimly lit room, my huge bump covered in cold jelly and the sonographer doing her thing. She asked if we’d like to know the sex and we declined – we fancied a surprise at the end of all the pushing. After another 20 minutes of scanning, the sonographer casually dropped a bombshell with “…and there’s the other pair of legs…” We were expecting identical twins.

I was 21 weeks pregnant, this was my fourth ultrasound (due to a few complications) and up to that point three different doctors had ‘missed’ one of my babies!! I sat up as quickly as my beached whale body allowed and expressed my extreme shock in a rather incoherent panicked way. The next few minutes are a bit of a blur of excitement and pure terror- I remember a midwife ushering my husband into a seat as she told me she “didn’t want to be scraping him off the floor.” His face was ashen.

Once the initial panic dissipated, we were so excited. There was a lot of whooping and congratulating down the phone from our family and friends. Our twin adventure had begun.

This explained why I had been so rubbish at being pregnant. I’d had all these really romantic notions about what it would be like to be pregnant – blooming and beautiful and all that nonsense. This was not the case for me. I was a mess. I felt normal for all of about 2 weeks after the crazy, wonderful white stick blue line moment. Then it was just awful. I have never experienced anything like the bone crushing tiredness I felt. I was coming home from work and getting into bed at 7pm! This was not helped by the fact that I couldn’t stomach my favourite friend – coffee. I missed my daily nespresso hit. I’m a little bit embarrassed to admit that I was genuinely worried that I’d never like coffee again!

Everything made me feel sick. I was very rarely actually sick but I had pretty much constant nausea for 4 months. I’m sure every single one of my work colleagues knew I was pregnant well before any announcement. The only way I could keep the waves at nausea at bay was to munch on dry crackers and ryvita pretty constantly! Not particularly normal behaviour in the office. I was never very convinced that baby brain was a ‘thing’ – just sounds like a bit of an excuse for laziness (ha!). I had extreme baby brain – it was like all my brain cells went into hibernate mode. Seven months later and I’m not entirely sure that the majority of them have woken up!

Then there was the evil SPD. You produce a hormone when you are pregnant that helps to relax your muscle ligaments to aid with the birthing process. With SPD too much of this hormone makes your pelvis loosen and misalign, causing a lot of pelvic pain. By 19 weeks I was really struggling to walk – I had a brace and some crutches thanks to my lovely physio. But even a few steps was hard work. I was struggling into the office in a brace and looking like I had advanced arthritis. I was not a poster girl for pregnancy.

To top it all off, everyone that I’d ever knew that had been pregnant had sailed through – making it all look so easy and not really having a massive impact on their day to day life for 9 months. They all looked gorgeous with perfect little round bumps, glowing cheeks and shiny hair.I was convinced I must be doing something wrong.

So when I found out we were having twins I felt vindicated. I’m not totally useless at pregnancy per se. I am however utterly rubbish at the process of growing twins. Although I have to say, the final results were pretty flipping gorgeous.

Ps. If at all possible, I’d recommend growing one baby at a time!

PPs. I’m not convinced that I’ll ever test out the above theory with another pregnancy!

My-Twin-Pregnancy-Part-1

 

I’m linking this post up to the #FabFridayPost and #coolmumclub

Ethan & Evelyn

Mummuddlingthrough