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!

As you can see, Leo has certainly grown so much in just 1 year!

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!