Multiple NICU stays: balancing babies at home and babies in NICU

Lily, a two-time NICU mum, tells us about her experience of difficult pregnancies, miscarriages, twins and multiple NICU stays.

Our story

When you plan to have a baby you just expect to get pregnant and then have a baby. Except for us nothing ever goes quite to plan. Our first pregnancy ended in a miscarriage. We’d gone to the 12-week scan excited to see a wiggling baby, but we were told that our baby died a few weeks earlier. I’d had no symptoms that anything was wrong and we were devastated. I needed surgery as my body refused to miscarry naturally.

Gryffyn: Our first NICU baby

I then fell pregnant again straight away and our baby was born at 27+6 after I went into hospital with a UTI. I then developed sepsis and it was confirmed that I had chorioamnionitis. I was already 5cm dilated when they examined me and I was fully dilated a few hours later after a blur of steroid injections and magnesium sulphate. Our baby boy, Gryffyn, entered the world bottom first and was taken straight off to NICU. Five hours later we were allowed in to meet him. He weighed just over a kilo at 2lb 6oz. He looked so tiny and was so bruised from being born breech.

Gryffyn’s NICU stay was not a straightforward one. I finally got to hold him for the first time at 6 days old. But at 7 days old he developed a Candida infection from the long line and needed to be re intubated. A few days later it was confirmed that he had Candida meningitis. He was treated for 6 weeks and eventually was extubated onto CPAP, high flow and then low flow oxygen. He had multiple blood transfusions and platelet transfusions during this time. He was also treated medically for NEC twice. Eventually, he got to leave the intensive care room. A day we thought would never happen! I came in to visit one day and he’d been moved down to high dependency. The first light at the end of the long tunnel.

It was really hard being on the unit at times. Some of the nurses seemed very “old school” and discouraged holding Gryffyn to let him rest and grow. I didn’t feel like he was mine. It felt like he belonged to someone else and I just got to borrow him sometimes. We weren’t in control as his parents, someone else always was and we had to adhere to their schedule.

After 11 weeks we finally got to take Gryffyn home weighing just 5lbs with oxygen as he had chronic lung disease.

After having our first baby so early, we really felt like we’d missed out on something. We didn’t get to plan the nursery, pack the hospital bag, no baby shower or any celebrations. So we decided to have another baby fairly close in age. We were nervous that another baby would arrive too early but we had been reassured that what had happened with Gryffyn would be unlikely to occur again.

Another miscarriage and our rainbow baby, Sadie:

I found out I was pregnant again when Gryffyn was six months old. But it was another miscarriage, exactly the same as the first and needing surgery again.

I then fell pregnant with our daughter, Sadie, and had a textbook pregnancy. The day after her due date, I woke with mild contractions and my waters breaking. We headed to the hospital where our baby girl arrived just an hour later. She was placed straight onto my chest for immediate skin-to-skin. We went home a few hours later with our enormous 8lb 4oz bundle. It felt very strange going home straight away without an oxygen tank in tow!

Another miscarriage and two rainbow babies:

A few years later I discovered I was pregnant completely unplanned but miscarried a week later. We’d kind of gotten used to the idea of having another one so decided to add a third. Or so we thought. A few months later I was pregnant again and an early scan revealed that I was pregnant with identical twins. They shared the same placenta and this would be a high-risk pregnancy. I was monitored by the premature prevention clinic and we knew they’d need to be delivered by 36 weeks.

I went to my second cervical length scan at 19+5 without any concerns, but that quickly changed when they discovered that I was 2cm dilated. I was there alone and was told that my husband needed to get there straight away. The next hour was discussions of what our choices were. We were offered a termination, to do nothing but I’d certainly go into labour soon or they could try putting in a stitch. The consultant wasn’t confident that it would work as my cervix was so thin and they might break my waters during the procedure. This was the only option that we wanted to consider so I was admitted to the delivery suite and prepped for theatre.

The procedure was successful but the whole thing was quite a traumatising experience. I then had to take it easy and just hope that these babies stayed put. It seemed that things were going to be ok, that was until I got Covid at 23 weeks and my waters broke in the middle of the night a few days later. We went to the delivery suite where the stitch was removed and we were again given some pretty awful options. A termination or wait it out but I’d likely go into labour very soon or be forced to deliver them due to infection. We were told that twins born at this early gestation would unlikely survive and if they did then they’d be very disabled. It would really depend on their condition at birth as to how much the NICU team would be able to do to help them.

We opted to give them every chance so I was taken to the nearest hospital with a level 3 NICU which was 1.5 hours away. Nothing happened for a few days and I was left alone in a side room to just wait. I couldn’t have visitors and I just counted down the hours to make it to the next day.

At 24+1 I woke in the morning with mild contractions. I told the midwife that I thought I was in labour which they confirmed and that it appeared I had chorioamnionitis again so the babies needed to be delivered soon. I was allowed to call my husband to be there with me. I was given an epidural in case they needed to get me to theatre quickly, but it completely failed.

The midwife examined me again and I was bleeding quite heavily and she could feel the cord over twin 1’s head. The consultant rushed in along with more midwives and doctors. The consultant pushed the cord back in over Twin 1’s shoulders and then announced that I was fully dilated. The NICU team hadn’t arrived yet and our Twin 1, Polly, arrived just 1 minute later. She was grey and lifeless. The midwives neopuffed her whilst waiting for the NICU team. Our Twin 2, Beatrix, arrived 11 minutes later along with the NICU team.

I didn’t get to see either of them as I was immediately rushed to theatre with a large haemorrhage and retained placenta. I had no idea how my babies were, if the NICU team had been able to help them or if they were being given “comfort care” by my husband. I kept thinking “what if they die and I won’t get to see them or hold them?!”

Eventually, they stopped the haemorrhage. I’d lost 2.5 litres of blood and had a torn cervix. I was wheeled back to the side room where there were no babies. They’d been taken to NICU and it was 9 long hours before I got their first photos or any news. Unfortunately, my husband had to go home as he now had Covid. I then spent the next week at the hospital alone. I couldn’t go and meet my girls for 3 days until I was Covid clear and my husband couldn’t come back to the hospital for a week until he was clear.

Our second NICU stay

I finally got to meet Polly and Beatrix (Trixie for short) and they looked so different to their brother, but then they were half the size he was. They weighed just 496g and 572g. Trixie had a very hard first week. She had multiple pneumothoraxs needing chest drains and on day 7 a perforation was found in her small bowel. She was rushed to the nearest surgical unit a further 2 hours away.

My husband had to go home to our other children and I followed Trixie to the surgical

Unit, leaving Polly alone. When we arrived at the surgical unit Trixie was immediately prepped for theatre. The surgeons warned that she may not survive the surgery. I’d never held her. I’d barely been able to touch her.

Several hours later I got a call from the surgeon explaining that it had all gone well. Trixie had NEC and they removed 10cm of her small bowel and created a stoma. Her entire abdomen had been contaminated with meconium. She was a very lucky little baby.

For the next 3 weeks, I drove between the two units and home to try to see all of my children. In reality, I barely saw any of them as I spent more time travelling. I was exhausted. I was trying to recover from the birth, COVID-19 and establish a milk supply for twins.

As Trixie would need to remain at the surgical unit for a long time due to the location of her stoma which made nutrition challenging, it was not a sustainable situation. Polly then moved to the surgical unit to join her sister so that we could be together. She had also been medically treated for NEC during this time.

They were both ventilated for 5 weeks needing two rounds of steroids to enable extubation. They were also masters at self-extubation, especially during morning handover. Trixie earned the nickname Tricky Trixie and they certainly kept everyone busy! They spent several weeks on bipap and eventually CPAP before moving on to high flow and low flow. Both had multiple episodes of sepsis, many blood and platelet transfusions, chronic lung disease, large PDAs and brain bleeds. We eventually had our first twin cuddle on day 59, the first time the girls had been together since birth.

After 10 weeks together, Polly was moved to our local unit to make space in the surgical unit. She then had to move again for ROP surgery, and then back to our local unit again all whilst Trixie still needed to remain at the surgical unit. Trixie had her stoma reversed earlier than planned due to developing conjugated hyperbilirubinaemia from long-term TPN. She was so unwell that her liver, kidneys and gall bladder were all struggling. She was having daily prolonged apneas with the crash bell being pushed multiple times. She also then needed ROP surgery.

After 6 long weeks apart in units 3.5 hours away from each other, Trixie made her long journey to our local unit for a few more weeks of learning to feed and breathe. They then made it home together after 144 days. Polly came home with oxygen and Trixie with the NG tube.

The worst part of their NICU stay was the separation. Having them in different hospitals so far apart and trying to split myself into so many pieces was just torturous. They never made it into a twin cot and we only ever managed 3 twin cuddles. They weren’t together for their 100-day milestone or their due date. These little things mean so much and that’s what makes it so hard. Twins shouldn’t be apart and I feel so angry and robbed that my girls had so much time without each other. Every time I drove away from the hospital to either visit the other twin or go home to see my husband, Gryffyn and Sadie, it was so distressing because what if something happened and I couldn’t get there quickly to be with them?! They were still so fragile for a long time and it was always in the back of my mind that we could still lose them.

I also did most of this alone. My husband had to work and be at home with Gryffyn and Sadie. He would visit the girls every other weekend so barely got to see them. Covid restrictions were still in place so Gryffyn and Sadie couldn’t meet them either, nor could the rest of our family.

Where are we now?

At times it felt like we’d never leave the unit with our babies. We saw so many come and go before us and it felt like it was never going to be our turn. But your turn does eventually come and although it’s not the way you imagined it would be, and the coming weeks, months and years may continue with hospital admissions, appointments and concerns about development, you have your baby with you and they are all yours to keep. Go home, get in your own bed and cuddle the baby!

I think what kept me going was making friends with other parents and trying to make light of our situations. We would share meals in the evenings over at the parent accommodation and it was like a little haven away from NICU. It’s important not to feel guilty for having a break. The nurses are also like friends and we love sending them updates on how the girls are doing now.

I am also so pleased that practice has now changed and we were so much more involved as parents with the twins. We were fully involved with ward rounds and discussions about treatment rather than feeling like bystanders.

Gryffyn is now a very tall 10-year-old! He has been diagnosed with Autism, ADHD and Dyspraxia. He’s a complete train and computer geek, has the driest sense of humour and a head full of facts.

Unfortunately, feeding never went well for Polly and Trixie and they have remained tube-fed after it was discovered that they have uncoordinated feeding and aspirate on liquid. They are now nearly 20 months old and are crawling everywhere. They had their gastrostomy surgery in the summer for their mic key buttons so we finally have tube-free faces! They are the happiest little girls and have done so much better than anyone ever predicted them to. We are always so eternally grateful to everyone who looked after our 3 little babies. We are so lucky to have them with us after such difficult starts in life.

Thank you so much for sharing your story Lily, connect with Lily at @pollyandtrixietwins.