We found out we were expecting identical twins at our first scan. We were sat down in the hospital and told all about how twin pregnancies, especially identical twins, are much higher risk, and how I’d deliver around 36 weeks. I was scanned every two weeks during the pregnancy, and seen by a consultant at those appointments too. Around 23/24 weeks, I had a pre-eclampsia scare and spent 7 hours on the delivery suite getting my blood pressure down as well as steroid injections to help the babies lungs in case delivery was needed.
Around the same time it was noticed that Twin 2 had Absent EDF (End Diastolic Flow) through her umbilical cord. We went onto monitoring every other day and I was told to pack my hospital bag, just in case…
On 15th April 2016, I was booked in to have a Glucose Tolerance Test (GTT), as well as one of my regular scans. I was 26 weeks and 1 day pregnant.
After the scan the sonographer said she was popping to see the consultant as per usual and I went back to the midwives to get my blood pressure checked. Instead of the midwife though, one of the registrars came to see me. She explained that Twin 2’s Absent EDF had now reversed, meaning that there was an issue with the flow of blood through my placenta. It’s classed as a very severe condition and can often result in fatalities.
The registrar explained that they needed to deliver the babies as soon as possible, because they couldn’t be sure that the twins would survive if the blood flow was compromised. The next few hours flew past in a blur. I rang my husband at work and ask him to come to the hospital, but because of the twins gestation I couldn’t deliver at my local hospital. Instead the hospital had to find us two intensive care incubators at a level 3 NICUs in the North West. Luckily, there were 2 incubators free at Royal Preston Hospital, which was about 17 miles away. I was transferred by ambulance, blues and twos screeching through the town and down the motorway.
I was booked in to have a c-section that evening. An obstetrician came to see us to let us know that we didn’t have to deliver that day, that I could stay in hospital for the weekend, be monitored and to give the babies a few more days. However, it was a very distinct possibility that we could lose Twin 2, or even both twins over the weekend. We were completely unprepared for this news – how could we wait to see if one, or both, of our girls passed away? We decided to go ahead with delivery.
The girls were so small and poorly, I didn’t get to hold them when they were born. They were put in small plastic bags to conserve heat and skin moisture, then intubated in theatre. All I saw was a glimpse of a tiny face swaddled in blankets as the travel incubator whizzed past me. I didn’t even see Twin 2 being taken up to the unit. We didn’t see the girls for around 7 hours after that. They were very poorly and the NICU staff needed time to stabilise them.
When we did see the girls, I was wheeled up on my hospital bed into the Intensive Care section of the NICU. There they were! Tiny little scraps in huge incubators, with shiny, almost translucent skin, and their eyelids still fused together. Tiny little nappies on, which were still too big, and huge ventilator tubes in their mouths. They had tubes going into their umbilical cords (UAC), as well as PICC lines. Their incubators were next to banks of syringe drivers and monitors.
Twin 1 – Felicity Rose, weighed 1lb 11.5oz; and Twin 2 – Scarlett Grace, weighed 1lb 7oz. Felicity was very, very white and pale – she was having lots of blood transfusions, as she had low haemoglobin. Scarlett had an excess of haemoglobin, stolen from Felicity, and was dark red. She was under special blue lights, to help her body process and break down the excess haemoglobin.
Because they were so early, their lungs weren’t formed enough or strong enough to breathe for themselves. They had been given several doses of a drug to help their lungs work and were being mechanically ventilated, on high levels of oxygen. They were on morphine, special liquid nutrition, antibiotics, diuretics, blood thinners and more.
They were too poorly to be held, too poorly for milk and had very little body fat. Their incubators were hot and humid – condensation dripping down the sides. They had a nurse each to look after them – skilled and compassionate, who made up their little doughnut-shaped beds with infinite care, picking the softest sheets; and apologised to the babies every time they took blood or had to move them. Nurses who handed me tissue after tissue to mop my tears up once I’d changed their first nappy through the incubator ports. Nurses who explained the technical things to us, and encouraged us to talk to the girls through the incubators; who chivvied us to eat properly and take a break from the darkened rooms.
When we were told that Scarlett was just too poorly and was probably not going to make it the nurses were there for us. They were at our sides when we started to give the girls my expressed breastmilk – 0.5ml at a time. We got to hold Felicity after 2 weeks and Scarlett after 3 weeks, the nurses gently put the girls down my vest and arranged the ventilator tubes. They were the ones who called us at 4am to ask us to come in because the girls had taken a downturn, or had needed reintubation. When Scarlett had a pneumothorax, they explained it in terms we could understand; when she needed a different type of ventilation (oscillation), they told us encouraging stories of survival. They engineered our first double cuddles – we held a tiny twin each, and then a few weeks later, I held both girls together for the first time since they had been born.
We spent 16 weeks in NICU (my ‘full pay’ part of maternity pay finished before the girls were classed as ‘term’ and before we got to take them home) – each day spending 10 to 12 hours in hospital, to do nappy changes and tube feeds, to have the girls weighed, to wait for doctors rounds. For 12 of those 16 weeks, I expressed milk every 3 hours of every single day. I’d set alarms for midnight, 3am, 6am to wake up and express; taking my milk into the unit in a coolbag. I’d express by the incubators or in the ‘expressing room’ with other mums, all of us with our own stories. You could tell who was a new mum on the unit – unsure, shy, confused by the equipment, worried that she’d only pumped 20ml. For us long-termers, we joked about expressing – no shyness for us! We asked about each other’s babies – were they off ventilation? Taking more milk? Had they put weight on? It was like a mum and baby group, but with no babies. We left the unit every night with empty arms, trying to avoid the normal families taking home normal babies.
I remember driving home and thinking “This isn’t how maternity leave should be. I should be going to baby massage and sensory groups, not waiting for doctor’s rounds and researching the use of steroids on pre-term babies.”
The girls made slow progression. It was often one step forward and two back. Weight gain was paramount, and we celebrated every gram gained. They needed 2 courses of steroids to assist their breathing, to help transition them to the lower levels of breathing support. They were fully ventilated for 4 weeks. At 8 weeks old, Felicity got an infection and almost ended up back on the ventilator. Both girls tested positive for MRSA and we spent weeks in an isolation room on the unit, so that it wasn’t passed to other babies. We hit their due date when they were 97 days old; and on their 100th day in NICU, the nurses brought us a cake and we had a little party.
In August 2016, (16 weeks old, 2 corrected) the girls were moved to the Paediatric Unit of our local hospital for transitional care. They were around 3kg each. We had to have oxygen installed at home for them both before we could bring them home, and they had to be weaned off the steroids, diuretics and the sodium that they were still on. At 18 weeks old (4 weeks corrected) we were finally able to bring the girls home.
We still see the Neonatal Outreach Team twice a week at home to help wean the girls off their oxygen. We have appointments at 3 different hospitals to deal with various issues they have.
They are still tiny. At 9 months old (6 months corrected) they are not quite 12lbs yet. They are in 0-3 month baby clothes and are on the 0.4th percentile of weight for their corrected age.
I’m now faced with thinking about returning to work after their first birthday, when it’s the last thing I want to do. By April, they should be off oxygen (by a few weeks), but will still be small – around the 14/15lb mark. Whilst technically they’ll be a year old, developmentally it’ll be closer to 8/9 months.
I feel like I’ve been robbed of my time with them. I spent the first quarter of their lives in hospital with them, and now home I spend so much of my time doing medical related things for them, like checking and weaning oxygen, giving medication, attending appointments, or having visits at home from various teams. A NICU start is just that, the start – our journey continues….
With thanks to mum Shelley Watson for sharing her story.
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