PPROM – their story
Leo and Theo’s story starts at the beginning of September 2016 when my husband Carl and I found out we were pregnant after 15 months of trying to conceive, we were absolutely thrilled to find out this news. Two weeks later we went for a private scan to see there were two babies on the screen, we were expecting MCDA twins, we were over the moon.
Everything was going very smoothly until I was 22 weeks and 5 days pregnant, when it became apparent I had PROM (Prem rupture of membranes) . A few days later on Wednesday the 11th January 2017 I was in pain and that evening gave birth to Theo (Twin 1) and Leo (Twin 2) at 23 weeks and 1 days gestation.
The hardest goodbye
Sadly, Theo was too weak and passed away shortly after birth. Without a doubt the hardest thing we have ever been though, there isn’t a day that goes by we don’t think about our Theo.
Leo, shortly after being born, was admitted to the Oliver Fisher Neonatal Unit at Medway Maritime Hospital, we were told if everything went right we would be here until his due date in May. I naively thought that if we could take him home I could ride the storm, this was the start of the 19 weeks he would spend in hospital. Even breathing is hard when you have a baby born on the verge of survival. Baby’s born at 23 weeks only have a 20% chance of survival. Things can go from good to bad very quickly and we would soon find this out.
We spoke to Leo’s consultant about how I had planned to feed him. I wanted to breast feed him so later that night a midwife gave me information on how to hand express which I started to do, it’s a pain staking process where you collect colostrum in 1ml syringes. After 24 hours I was able to use the electric pumps. I was showed how to use this by a nurse from the feeding team on the unit. Breast milk for premature babies is very important, it is easier digested than formula, it contains immunoglobulins which help fight infection and babies like Leo are very susceptible to something called NEC (Necrotizing Enterocolitis).
Retinopathy can cause blindness in premature babies and breastmilk can help prevent this progressing. There are several studies that show that premature babies that are given breast milk have better developmental outcomes. In general it helps keep babies more stable, healthy and after discharge less hospital and GP admissions. Later on it can help mothers bond with their baby which can he hard when you have been separated by any incubator and having to leave your baby for so long.
One of the nurses suggested writing a diary whilst in the Nicu, you will see some our daily entries in italics.
Day 1 and 2 were worrying but uneventful. However, on day 3 Leo became very poorly. He was in respiratory distress. This was due to his prematurity and lack of surfactant (something that isn’t produced by the body till later on in the pregnancy ) it stops the lungs from sticking together and collapsing). Leo was given artificial surfactant and the doctors tried to change his ventilator breathing tube, but his body was just too small to cope with anything bigger. I remember extra pump stands being moved over, he was now needing nine different medicines to keep him alive. That was the longest night, we stayed by his incubator reading him stories and willing him to live. Night became day and he was still with us.
Over the next two weeks, Leo had scans for his PDA (a duct in the heart that bypasses the lungs when the baby is in utero and closes when the baby is born. However, this doesn’t happen in pre-term babies. Leo had many ups and downs on oxygen, several blood transfusions, two courses of ibuprofen to close his PDA, steroids to boost his lungs, an infection that required a lumbar puncture which thankfully was negative. Leo had his first poo, which was very exciting, however, we don’t get so excited anymore!
One morning we went into the unit to find Leo had opened his eyes for the first time, this was a thrilling but emotional time.
“When Mummy and Daddy saw that you had your eyes open for the first time, we were so pleased for you!! It was so exciting!”
At four weeks old it was time for first cuddles, this was an amazing day, one we shall never forget. Two weeks later Leo had his first trial at being extubated (breathing without a ventilator), unfortunately this was unsuccessful. The next attempt also failed, although it was for much longer this time, so progress was being made.
It became apparent that Leo needed his PDA ligation (an operation where they put a clip around a duct in his heart to close it) and we travelled to London for this operation at St Thomas’s Hospital. We were told that one in 20 babies would die within a month of having the operation. It was hard to sign the paperwork but Leo was ventilator dependant and he needed this operation.
“You made it all the way and settled very well into your new surroundings, you had a lovely view of the London eye out of your window”
The next day we went down to theatre with Leo, we hoped and prayed he would get through this.
“You went down to theatre at about 1 o clock, we went down with you and kissed your head before you went to sleep”
A few long hours later, Leo came back up to NICU and what followed was a rough few hours before being stabilised.
Five days after Leo’s PDA ligation he was extubated, this time it was successful.
“Today we phoned at 8.00am excited to see if you were on vapotherm and you were, we are so proud of you Leo!”
This was a turning point, Leo went from strength to strength, he gained weight, was able to wear clothes, came down on his Vapotherm (Vapothem is a machine that delivers humidified oxygen). He moved to HDU from ICU and he was also given just oxygen. He started to breast feed and was then moved to the Special Care Unit, but all this didn’t happen overnight.
So we had been warned, and we were grateful that we had been, that sometimes babies bounce back to the rooms they had left. Leo was having de-sats (drops in oxygen) and brady’s, ( drops in his heart rate) which was unlike him. He was requiring more and more support to keep his oxygen saturation levels up. After a few scary moments a consultant stabilised Leo. He was now back in HDU and was on the highest level of Vapotherm. They put him back in an incubator with only his nappy on so his breathing could be monitored.
It was a blow to see him take so many steps back so quickly. We stayed that night until the early hours. He was then stable enough for us to leave him.
A few days later Leo went to Kings College Hospital in London. Leo had an inguinal hernia that could strangulate and/or was causing him pain. Once at Kings, we met with the surgeon who decided to operate. A few days later he performed an Inguinal hernia repair on Leo.
Two days later, Leo was transported back to Medway hospital, we were pleased Leo was “home”.
“We got back to Medway and it was lovely to see everyone and they were glad you were back too. Your nurse soon got you settled back in”
Over the next few weeks with the help of the feeding team Leo greatly improved at breastfeeding, within weeks we were having home oxygen Installed and then rooming in.
On the 22nd May 2017, after 131 days, we were able to take Leo home on oxygen. It was a very special day!
Leo has been home now for 15 months, he is a happy little boy who loves to explore the world around him, he is walking and no longer requires oxygen day or night. He continues to show the determination he has in everything he does! The care we received and continue to receive from the Oliver Fisher Neonatal Unit is second to none. We shall always be thankful to everyone involved in Leo’s care.
When Leo first came to Dinky Days Photography for his newborn session (at 5 months and weighing just 6lbs 8oz), he was so tiny. His update images sure show how big he’s got. Incredible!
Oh and some extra news? He’s going to be a BIG BROTHER!
Ill see you for your newborn shoot soon!
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.
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!
Welcome baby Macey
The 15th July 2016 was a bittersweet day. My 3 year old was having his last day at preschool and starting school in September. Little did I know how the day would turn out world upside down!
Waving him off to his preschool leaving party I felt a very strange feeling in my stomach, I dismissed it and went off carrying on with some errands before I picked him up.
Little did I know or guess in my wildest dreams what would happen next.
Just 70 minutes later I was cradling a baby girl which I delivered on my bathroom floor. I had no idea I was pregnant, this is something you read about but really do not expect to happen to you.
It wasn’t long before Daddy ran home from work to find her crying in my arms.
She was taken to hospital due to her cord snapping and them needing to clamp it. Soon it became apparent she was making some unusual noises, but they couldn’t work out what they were. After numerous doctors examined her, the midwife asked to do her checks and found that she had a cleft palate. She was immediately fitted with a nasogastric tube (ng tube). It wasn’t till she was 4 days old when we finally got to meet our cleft nurse, when we reached hospital number 3 that she was actually diagnosed with a condition called Pierre Robin Sequence. When she was about 6 week gestation her jaw stopped growing (reasons for this are relatively still unknown) and this caused her tongue to be set back and in the wrong position, also her palate couldn’t close properly causing her cleft. This coincidentally means that whenever she was laid on her back her tongue would fall back and block her airway causing her to stop breathing.
We then had to wait 15 days for a bed at Great Ormond Street Hospital for her to have a sleep study before we could be discharged.
Time to go home
On the 9th August 2016 we finally got to bring Macey home after 25 days over 4 different hospitals.
9 days later, sadly we were admitted back to great ormond street as Macey was showing signs of obstruction again and after a further sleep study, it was decided she needed assistance from a nasopharyngeal airway (NPA) which is a tube which goes up the nostril and sits just behind the tongue to keep the airway tract open. This meant that I had to undertake training to sew, make, put in, change, suction and care for her with the NPA, and now she would also have to be put on a sats machine while asleep. This was on top of the 3 hourly NG feeds.
In September 2016 we received feeding pump training and this allowed us to deal with her reflux issues and suction her without having to manually hold a syringe and try to do everything else at the same time.
Aimee at Dinky Days Photography first photographed Macey 2 weeks before she had her sleep study in April 2017.
Macey had her airway until April 2017 when a sleep study confirmed she no longer needed it.
Macey has struggled with her growth and weight gain since birth, being 13lb 9oz at a year old and 18lb 8oz at 2. She also has a kidney condition called bilateral nephrocalcinosis which is being monitored.
In June 2018 Macey went bak to Great ormond street for her cleft palate repair. She was in for 3 days and her surgeon has done a fantastic job! She is still tube fed at just turned 2 and our journey is far from over. We had never heard of Pierre Robin Sequence before Macey was born and through the world of social media we have met and spoken to many affected families from all over the U.K. Every prs child’s journey is so different and research into linked conditions is still ongoing.
Having Macey inspired me to start up my own business called tubie doodles making patterned medical stickers for children who have essential medical tubes – such as NG or NJ tubes or nasal prongs.