"Finding Bliss and its information was invaluable" - Aimee and Tom's story

Our story begins with Max, our angel baby delivered on 17 June 2020 sleeping at 16 weeks, followed by five early miscarriages in the two years leading up to February 2022.

When I missed my period, I figured we were going down the same route as the previous months, where we were met with a positive pregnancy test, followed by my period.

When my next period didn’t come I tested again and again and again, I couldn’t believe I was staying pregnant.

At the six-week scan, when our midwife said, “I can see three heartbeats”, our eyes were wide with amazement. Another appointment was scheduled at nine weeks and we were told we were actually starting out with four babies!

We were swiftly told that one hadn’t made it and would be re-absorbed by my placenta. We have never really grieved this loss but I often wonder, as I do with Max, who she would have been.

At 12 weeks we were referred to the foetal medicine team at Royal Derby and to our amazement were greeted with the same consultant and midwife who led my pregnancy with Max.

When we eventually saw the babies on the screen, I broke down in tears of pure relief.

I developed pre-eclampsia at around 29 weeks and after 30 weeks, things started to go south, literally. Baby number two had decided she was coming out first and moved transverse along the bottom of my tummy.

After a routine blood test my consultant noticed my blood platelets had dropped to dangerous levels so we couldn’t wait any longer to deliver the babies.

The babies were delivered at 31 weeks and five days at 19:20, 19:21 and 19:22 weighing 2lb 12oz, 3lb 10oz and 3lb 8oz in a theatre full of about 20 people. Five to each baby, two surgeons, anaesthetists, a midwife and goodness knows who else!

The babies were immediately taken from us by the ANNPs (Advanced Neonatal Nurse Practitioners) down to NICU and I was wheeled off to HDU where I would be monitored for my high blood pressure.

At around 9pm I was informed I would not get to see the babies until my blood pressure stabilized (it was thought I was exhibiting signs of a potential stroke).

It would be 12 hours from delivery before I was allowed to see and hold my babies.

At 7am the next day we made our way down to the NICU. We were not prepared for that environment. I wish we’d had the option of a visit to the NICU beforehand and this is something I would recommend to families with the foresight of a NICU experience.

One thing we did before visitors arrived to see the girls was mentally prepare them for what they would see as it is overwhelming – machines bleeping, tiny, babies crying, doctors rushing around. Our three little girls were connected to machines monitoring their heart rate and oxygen saturation with cannulas fitted.

Baby number two weighed only 2lb 12oz and was linked up to a machine we now know as TPN (Total Parenteral Nutrition). The blockage in her stomach meant she was nil by mouth and would go on to receive fluids through a long line containing all that was nutritionally necessary to keep her alive.

She would receive this for eight weeks before she was big enough for surgery.

Once we had seen the girls we confirmed their names. Our first born is named Ruby Win, our second born Darcy May and our third beautiful, miracle arrival, Autumn Rose. Ruby Win had stomach issues, Darcy May appeared to be slightly yellow and Autumn Rose was having a few de-statting issues.

We spent all day cuddling them and returned to the hospital room later in the day to rest and I began to pump colostrum for Darcy and Autumn as Ruby would not be allowed any.

Fortunately, thanks to the wisdom and experience of our neonatal nurses I was advised to pump as much colostrum and milk as possible and then the unit would freeze it for Ruby and once her surgery was done she would be able to take it. This made me cry. I was so happy this was an option for me as I had no idea it could be.

All babies continued to thrive, I was released from hospital five days later and we kept visiting every day. This is where I started to read about Bliss. I needed to know other people had been through this and made it out the other side.

I made efforts to search particularly for parents of multiples and their stories in the hope of garnering some “how to” information. Darcy and Autumn had their nasal tubes removed at 34 weeks and thankfully they took straight to the breast.

Once I had established them breast feeding I was happy to introduce the bottle. This was something that felt as though it was pushed upon me to do earlier by certain members of staff. I stood my ground and the girls continued to do both perfectly.

We regularly got all three together for photos and time for them to be next to each other. At the six week mark we were told Darcy and Autumn could go home. This was bittersweet as we knew Ruby was staying until she was big enough for surgery.

I started to feel very protective of her and would snap at staff who referred to Darcy and Autumn as ‘the twins’ - “they’re triplets!” I would bite.

Royal Derby’s NICU has two ‘flats’ for babies who are heading home with their parents to stay overnight.

We took advantage of this for two nights as it meant I could visit Ruby in the early hours which we’d been told was when she was quite active. We enjoyed these couple of days but the inevitable was approaching and that was me leaving Ruby in hospital and taking her sisters’ home.

If one more person beamed with excitement for us I was going to lose it! I couldn’t feel excited which of course then made me feel guilty for Darcy and Autumn. I got on with it but I was breaking down inside.

When Tom went back to work a few days later I got the girls fed, dressed and packed up every morning for another two weeks and headed over to Derby Royal (on two buses since I couldn’t drive due to the c-section).

When our midwife sat me down and explained to me that Ruby had Atresia I began to relax. After several blood transfusions and two sepsis scares, we eventually received the news that Ruby had to reach 2.5kg and then, providing a bed was available at Queens Medical Centre Nottingham (QMC), she would be transferred for surgery.

We met with the surgeon who was so impressed by her progress and her ability to fight that he was happy to perform the surgery at a weight of 1.5kg, a bed became free at QMC.

This presented another hurdle. I couldn’t get Darcy and Autumn across to Nottingham every day without an hour train/bus journey. I began having to trust other people with my two babies so I could see one.

Our parents were invaluable to us. We are so fortunate to have them. They had Darcy and Autumn so I could travel to see Ruby. Sometimes it wasn’t possible so we all went together in the evenings when Tom got home from work.

Ruby spent a total of four weeks in the QMC NICU. I still cry and can’t breathe when we drive down the A52. I don’t know if a road can give you PTSD but the approach to QMC sends me into an anxiety-induced mess.

QMC is very different compared to Derby - the babies are critically ill as it’s a surgical hospital. Some days were extremely difficult there and the lack of privacy in the NICU rooms meant you heard every word and saw every procedure detailed to parents.

We cannot however fault the care and compassion given to not only Ruby but to ourselves and to her sisters when we would all arrive together. The staff are truly angels.

Ruby eventually had her surgery and we were given full disclosure of all the things that could go wrong and the myriad of conditions that Ruby appeared to have an annular pancreas, right-sided aortic arch, extrahepatic portosystemic shunt, patent foramen ovale, and patent ductus arteriosus.

Ruby endured more tests after the surgery and her jaundice was not clearing up which meant her liver needed investigating. Light at the end of the tunnel was far away but a glimmer of hope came when Ruby took her first ml of milk, digested it and then pooed!

We joked that we never thought we’d celebrate poo so much! She continued onwards and upwards from this moment with only a slight setback.

Derby also had my frozen colostrum and milk transferred to QMC for her as soon as she was ready! Ruby was sent backwards and forwards between QMC and Derby to investigate her liver function. CT scans, MRI and HIDA (hepatobiliary iminodiacetic acid) scans followed. Birmingham Children’s hospital was also contacted and they liaised on her progress.

She began to improve and Birmingham advised that with regular blood tests for bilirubin and vitamins, she could be discharged. Ruby was transferred back to Derby and we brought her home the same evening. It was very emotional but we finally felt like we were on our way to normality after 12 weeks.

Our goodbye to Derby NICU was also emotional. They had been our rocks and continue to offer advice.

The girls are thriving. We were warned there would be developmental delays due to their prematurity but they have hit every milestone expected of their actual age. We await a six-month check-up and ultrasound of Ruby’s liver and continue to tread carefully where she is concerned.

I have made peace with enjoying Ruby in the present and dealing with any curve balls if they occur. I think NICU enabled us to be this way and adapt our thinking.

It also allowed us an element of control with small things like CARES - regular nappy changes, temperature checks, oxygen saturation probe changes and feeds. Feeling your baby squeeze your finger and look at you as you have your hands in that incubator is something words can’t describe.

Finding Bliss and its information was invaluable. Bliss continues to be a port of call with their information on weaning premature babies. I’m happy to say that the girls are doing well but having that reassurance is wonderful.

Tom, Aimee, Ruby, Darcy, Autumn x