Our Story

 

It all started on 22nd June, we were sitting waiting for our second scan, waiting for them to confirm if it was twins. That’s when we found out we were having not just twins, but identical twins.In that moment, we had to just laugh because if we didn’t we would have cried. Straight away Lewis said to me “if they’re boys, we’re definitely calling them Ronnie and Reggie Ray”… the more they said it, the more I loved it. So now was just the suspense to find out if they were pink or blue. Of course we were hoping and preying for blue! 20th July came.

I’m 16 weeks now and I’m really struggling with the morning sickness and feeling drained. Little did I know at this point was going to be the only part of the pregnancy we were able to enjoy. It was time for scan number 3 and this was when the bad news began. They had identified our dinky Ronnie had SIGUR (selective intrauterine growth restriction). There was around 20-25% difference in the size of our boys. Reggie was being a greedy monkey. They were sharing the same placenta but in their own sacs. Reggie was getting everything he needed from me and more but not by choice meaning Ronnie wasn’t getting what he needed.

Being on the cusp of referral for laser surgery, they wanted to leave us a few days and see if it starts to correct itself but just as they expected, it didn’t. It had worsened and Ronnie hadn’t grown at all and the difference between the two was now 30%. Meaning the ball was in my court as to if we wanted to have the laser surgery. Of course I wanted to do everything I could to save our little men.

27th July came. I’m now 17 weeks and it’s the day of our laser surgery. We had to travel to Kings College Hospital in London to be greeted by the amazing man himself, Professor Kypros Nicolaides. The fetal medicine professor who founded the laser ablation surgery. So I knew I was in safe hands. We arrived and was scanned to see if they agreed with our consultant that intervention was needed. And with our luck, of course it had to happen. You always get the excuses from stenographers as to why they can’t tell you at 17 weeks what sex the babies were but what more professional hands could we have been in to try our luck.

BOYS!!! We had our baby boys. I suppose we needed some good luck.

Cannula in and it’s a waiting game as to when they could fit me in. This is when we were filled with the ins and outs of the procedure. They needed to carry out this procedure for 2 reasons; a) to split my placenta in half to try and give Ronnie an even amount to Reggie. b) because they were so sure Ronnie wasn’t going to survive, they split the boys vessels apart because if he did pass then it wouldn’t affect Reggie.

It’s time for the procedure and I am petrified. this is all being done awake may I add! In a huge room surrounded by the professor, his colleagues and around 12 students. I’m just glad I was allowed Lewis and his Mum with me at all times. It was the most daunting experience I had to go through at this point in my life but luckily, the procedure was completely painless, just uncomfortable.

We did however witness something amazing in this procedure. I could see inside my womb in real life, not just a standard 3D scan. Then something amazing happened. Reggie’s foot shot onto screen and we could see his perfect little foot and his perfect little toes. So tiny and so so perfect.

Another week passed and it’s my 20th birthday. As a nice birthday surprise, we had a scan booked for that day to see how our boys were. I enjoyed a nice day shopping and couldn’t wait for 4 o’clock to come to see my beautiful boys on screen again. It’s my birthday and the worst day of my life. We get into our scan and instantly as soon as she starts scanning, I know there is something wrong. Those dreaded words.. “I just need to go and get the consultant”.

In those two minutes, everything possible is running through my head but not what we were about to be told. The consultant came in and grabbed hold of my hand and said “the surgery was a success but I’m afraid twin 1 didn’t survive. There is no heartbeat.”

My heart broke into a million pieces. But I knew I had to be strong for our obvious fighter, Ronnie. How? Why? When? How did our big stronger, healthier boy not make it.. The weeks are going by and I’m still struggling with the loss of our boy. I’m having scans weekly, to then every 2-3 days. Ronnie is really struggling to put weight on, the flow in the cord is getting worse and my placenta is slowly failing. And at 25 weeks, we’re told you’re not going to get much further into the pregnancy. I asked our consultant how far he thinks we’re going to get to which he replied “honestly… I didn’t expect to be sat down having this conversation with you now, I thought it was going to end horribly for you”. So with that, I agreed to have the steroid injections to help develop his lungs a little more. The 2-3 daily scans continued and then we eventually ended up having scans and CTG monitoring daily!

On Wednesday 11th October, we had our scan, all seemed as well as it could have been. Time for our CTG monitoring and there he goes, heartbeat pumping away like no tomorrow. That’s when his heart rate started decelerating and taking a while to pick back up. They decided to keep me in overnight and monitor Ronnie’s heartbeat further to see whether it was time to get him out. Luckily it wasn’t his time just yet. We were sent home and to carry on with our daily scans and CTG monitoring.

                          Friday 13th October.

The day we finally become parents. Things have worsened for Ronnie and our consultant has given him 3 days at the most in there but also told us, even that is a risk. We trusted his professional opinion and agreed to get the boys out there and then. We were sat down, informed of what would happen in theatre, what would happen when each of the boys were born, etc. I had to be attached to a drip for 4 hours with magnesium sulphate being pumped into my blood before they were delivered by c section.

I was absolutely petrified. Mainly because we didn’t know the outcome for Ronnie. They pre warned us that he wouldn’t cry. They reassured us and told us not panic and to leave the amazing neonatal team do their best. At 20:17, Reggie was born into the world first weighing a teeny tiny 83 grams. The midwife said it was a truly magical moment as Reggie was just there like a starfish, putting his arms out as if he was protecting Ronnie. He was the followed by our little fighter Ronnie, weighing a bigger but still extremely tiny 710 grams (1lb 9oz). Although they said it’s unlikely we wouldn’t hear him, we did!

He came out very angry and gave out the smallest, quietest cry we’ve ever heard. Ronnie required resuscitation after that and was ventilated to help him breathe. He was then brought over to me, quickly shown over my shoulder and whisked away to NICU.

I obviously had to recover before I could go round and see him. I couldn’t sleep and waited until the feeling came in my legs back to go round and meet my little boy. 3am and I attempt to get out of bed but it was just not happening. I was told to get some sleep and eat something and try again later. It was a whole 16 hours until I was able to get up, showered and round to meet my little man. That was when we first laid eyes on my perfect little prince. He was even smaller than we imagined and was no bigger than the size of my hand (head to toe). He definitely looked like his daddy (nothing’s changed)!

His whole journey throughout the NICU seems a complete blur to us now. Like a dream (or a nightmare…) that you can’t remember certain things about. He spent 4 weeks in intensive care and for almost 2 of those he was ventilated so we didn’t get our first cuddle until he was 13 days old. Just a simple hold of his finger and hand on-top of his head.

Next was high dependency, which he spent another 3 weeks in, and the last room before home, the special care nursery which he spent a further 4 weeks in. It was a rocky rollercoaster for our amazing little man and he continued to show us what strength he had. He had cannulas and central lines here, there and everywhere pumping him with morphine, antibiotics and every other medicine he needed to help him pull through.

Ronnie had to fight sepsis, a bleed on the brain, a hemorrhage on the lungs, NEC (a bowel/intestine infection) which nearly caused him to pass away, a PDA on the heart (which causes abnormal blood flow between two of the most important vessels connected to the heart). What we had to witness him go through was something you’ll never forget. Seeing his oxygen levels drop to the 50’s and his heart rate drop to the teens. Constantly watching the monitors.

But in time we learned that it was more important to watch him rather than the screens. Now, it was a case of getting him to maintain his own temperature, wean his oxygen down, feed from bottles and put weight on.

Day 77.

11 whole weeks and finally.. It’s discharge day! It was finally time to take our little boy home. He was due to see a surgeon today because it had been noticed that he had a hernia. We were then told he needed surgery and could delay him coming home by another week or two. This absolutely broke our hearts in two. But due to there not being a bed available, they agreed to let us home and take him to kings when they had a bed space available. He was still only a tiny 3lb 10oz on discharge and due to his prematurity he has chronic lung disease. This meant he had to come home on oxygen but we didn’t care, we were confident and had never known any different.

It was winter so we had to be extremely careful with him and avoid any germs possible. A week after discharge and it was the day that Ronnie needed his surgery for his double hernia. Couldn’t believe that at just 4lb, my tiny dot had to have an operation. However, 24 hours after surgery, you couldn’t even notice that he had an operation the day before. It was all a success.

Again, he had shown us what a miracle he was. Now we could finally take our little boy home and enjoy him after 12 long weeks. No more hospitals (apart from outpatient appointments).. so we thought. Ronnie being as small as he was, with a lung condition like his, he had picked up a nasty bug, bronchiolitis. Ronnie needed a 4 day stay in hospital but this time paediatrics, not neonatal.

A bug this big for a baby so small, it knocked him down. Again after those 4 days, we were allowed to take him home. Well Ronnie was allowed home. I had to be admitted because I was extremely poorly. Dad took Ronnie home so they could both rest. However, 10 hours later, Ronnie had to be rushed back into hospital AGAIN!

Lewis turned up at the end of my hospital bed at 3 am and that’s when I was informed that they were going to need to do an emergency transfer to Kings College Hospital in London. I literally couldn’t believe this poor boys luck. They had to heavily sedated him, paralyse him using a medication to stop him moving his body and using all of his energy and ventilate him again. My heart was literally broken in a thousand pieces. I couldn’t even go with him because I was so poorly myself but I got to give him a kiss and him and daddy were taken by ambulance to London. His bronchiolitis had developed into pneumonia and his lung had collapsed.

5 whole days I was kept in hospital. 5 whole days I couldn’t be with my little boy.

The minute I was discharged, I had a call from Lewis to be told more devastating news. Ronnie was on life support, had multiple feeding tubes down his throat.

They attempted to put Ronnie on to his front but when doing so, the feeding tube got lodged and sent him into cardiac arrest. His heart stopped beating for a whole 20 minutes. 20 minutes it took them to get him back. Again, he came back fighting and fighting. He was put onto a different form of life support. This machine was the most daunting machine I’d laid my eyes on. You could hear it before even walking onto the unit and it made it look like Ronnie was having a constant seizure.

His little body was vigorously shaking.

It was another 3 weeks until they managed to take him off of life support and take his ventilator out. 3 weeks we didn’t get to hold our little boy for. Another week went by and we had managed to wean him down to a breathing support that our local hospital could offer. So we were transferred back for a further 3 weeks to wean his oxygen requirements and get him feeding from bottles again.

After another 7 week hospital stay, Ronnie was allowed home again.

As you can imagine, we were itching to get home but waiting for our next trip back. We managed to stay home for longer than a week this time! Ronnie was growing beautifully, hitting all milestones that he was supposed to be, developing more and more and getting stronger and stronger. Despite all that he had been through at this point, he was the happiest, smiliest little boy I’d ever met. 5 weeks home and Ronnie decided he wanted to go and visit his favourite nurses. As you can tell this was our reaction to it all now.

We had to laugh otherwise we would just cry. Ronnie had started going grey, mottled skin, temp was hitting 40, sensitive to light and was generally irritable.. after blood tests, blood cultures and a lumber puncture, it was confirmed that Ronnie had meningococcal meningitis and sepsis, again. Our life has just consisted of hospital trips after hospital trips and the longest we have been home and stayed home for is 8 weeks.

Ronnie is a red card holder and we can walk in as when we please so he does occasionally like to play tricks on us and sends us back for a nice day out but nothing sinister. To have been through all this and come out the other side with no long term affects. He absolutely amazes us and we count our lucky stars every single day.

We know that his brother, Reggie has been sat on his shoulder the whole time pulling him through each and every time, a true angel. For this, we are the most extremely proud parents to our amazing, brave boys. Ronnie and Reggie.


I want to thank Shannice and Lewis for being so open about their story. Their journey certainly had me in tears, what an emotional rollercoaster it’s been for you all. I have no doubt that Reggie has been with his brother Ronnie all the way. Keeping him safe when he has been up against the odds so many times.

I’m so looking forward to little Ronnies Cake Smash session on his birthday!

Maternity – Family  – Sitter – Newborn