Noah is now 12 weeks old and has fought many challenges, but he has shown his character

Noah was born 15 weeks early and has been in Newcastle's RVI ever since. Read his family's experience

Friday 7 May 2021 was like any ordinary day…walking the dog, a declutter of the house. That was until 5pm when I started to feel unwell. For peace of mind, due to being 24.2 weeks pregnant, Rob and I jumped in the car (for no doubt a wasted journey) to Whitehaven Hospital.

Fast forward three hours and we had been informed that I would deliver our baby within two hours. I was going into labour (which at the time would have been 16 weeks early). My intuition told me I needed to be at the Royal Victoria Infirmary (RVI) in Newcastle and so we pushed for a transfer. The consultants’ concerns grew and due to the imminence of delivery they did not want to transfer me. A few hours later after pushing for a transfer, my wish was granted, and we were then transferred to Newcastle’s RVI in an ambulance with the lights and sirens on.

Two consultants and a midwife accompanied me in the back of an ambulance to the RVI, they were excellent and kept the situation calm and focused. Rob was furiously following behind.

Rob and I were now on the RVI delivery Ward 32 and waiting. All the staff expected the baby to come that night. In the early hours of Sunday 8 May, we went for a scan to determine how things were with our baby. Thankfully, all was well.

On the Sunday afternoon I was sent for a cervical stitch operation to prevent our baby from arriving so early, but unfortunately the operation was not a success. The news of me being 8cm dilated was given, and that the procedure had broken my waters. Delivery was now evermore imminent. Our hearts sank and our worries spiralled.

For the next few days, I lay in bed as still as possible with Rob sleeping next to me. The balance was now maintaining the pregnancy without risk of infection and each hour and day was a bonus for us. After two false start labours and five days passing slowly, I began to feel ill. The doctors examined me and we were told our baby’s heartbeat had dipped – the time had come!

Following a sleepless and anxious night our consultant examined me and came to inform us that delivery would be within the next hour, 15 weeks early. Several complications and dreaded options were discussed due to the early gestation and the prematurity of our baby. Rob and I did not give these a second thought and we told them to do what they needed to do for our child’s survival.

It was a quick dash to the surgical room for an emergency caesarean. Rob put on his scrubs and was supportive and by my side the whole time.

Within an hour, at 11.06am on Friday 14 May, Noah Theodore Miller, our precious son, was born. We were blessed and forever thankful he was here safely.

“Rob and I could not visit Noah at the same time for the first two months which made the experience even more gruelling. However now fourteen weeks later we are still here.”

I remember asking if he was alive. He was ventilated after a minute and rushed for care. Our lives had instantly changed.

Rob and the doctors wheeled me around to see Noah shortly afterwards. It was surreal. Lots of piercing machines, people, panic. We entered a very alien environment – the Special Care Baby Unit (SCBU) and Neonatal Intensive Care Unit (NICU). An overwhelming setting. An experience we do not wish anybody to have to endure. The moments after childbirth are the most precious, Rob and I were wheeled to see Noah but did not get to hold him until 24 hours afterwards due to his prematurity. Our focus was locked. He was here and alive.

Ward 35 was now our new life…  hopefully just for a while. Covid restrictions were in force and Rob and I could not visit Noah at the same time for the first two months which made the experience even more gruelling. However now fourteen weeks later we are still here.

I am a patient on the transitional care ward establishing feeds with Noah. Noah is now twelve weeks old and has fought a few challenges, but he has shown his character through illness, surgical investigations, and surgery.

We have received support from two charities on our journey, Tiny Lives Trust and The Sick Children’s Trust.

Tiny lives charity support babies and families from across the Northeast region, the Scottish borders and Cumbria who find themselves in life changing situations and traumatic times. The RVI Neonatal unit is the regional centre of excellence for Neonatal care, so premature and sick babies are transferred there for expert help. The RVI Neonatal unit care for around 750 babies and their families every year. Tiny lives aim to raise £350,000 annually to support a range of facilities, staff, and equipment.

“Tiny lives funds material so that the nurses can take a print of Noah’s foot and handprints in his first week of life which is something we will cherish forever. These family integrated initiatives really make a difference.”

The charity also funds developmental aids to offer a range of support and positioning aids designed to help babies grow and develop well. It also funds staff posts of specialist positions on the neonatal ward to ensure the most supportive possible environment for babies and their families, including a paediatric physiotherapist, clinical psychologist, and a family integrated care nurse.

Travel and parking are considered, and all families get a free parking permit for the hospital. Refreshments and a parent’s room are also funded on the ward allowing an outlet close to your baby. This is essential when you are spending 18+ hour a day there for several months. Small mini-boo bonding aids are distributed, in the form of small cloth comforters, which allow Mum and baby to feel close even when apart, by smelling one another, helps to reduce the separation anxiety. We were given a children’s book to encourage parents to read to their baby as this is essential for all neurodevelopment function and a NICU journal to document our journey.  Tiny lives funds material so that the nurses can take a print of Noah’s foot and handprints in his first week of life which is something we will cherish forever. These family integrated initiatives really make a difference.

Tiny Lives offer a safety net for parents, like us, who have entered a world completely out of their control. Having a baby that is born prematurely or sick is a truly world-shaking experience which requires a lot of perseverance, resilience, and strength. It Is a mentally exhausting journey, but Tiny Lives has been there supporting us through it.

“Our son being three minutes away at any time has made situations like these so much more manageable.”

Most days were spent expressing milk, skin to skin, tube feeding and changing nappies throughout the tiny incubator doors. Each morning we attend a ward round with the neonatal consultants and devised a plan of care in a triangular approach. Throughout medical treatment ‘comfort holding’ was the alternative in the incubator. Gently cradling his head and legs.

The Sick Children’s Trust has given us a place to stay while Noah has been in NICU. We found out about its ‘Home from Home’ facility Crawford House when we were on the ward and have been here for ten weeks now. We don’t spend much time in Crawford house, but it is somewhere we can go after we have spent the day with Noah and get some sleep knowing that we are a close distance to the ward. There is a phone in our bedroom which links directly to Noah’s ward. The phone has been used a couple of times when Noah’s condition has changed during the night. Although it is horrifically unnerving to receive the calls, it’s there and is a fantastic resource. Our son being three minutes away at any time has made situations like these so much more manageable.

The staff at Crawford house have strong links with the NICU and ensure they liaise with the ward to ensure the families are supported. The house has a cleaner and is immaculate.

As we are approaching the end of our journey, 137 days later; and as Noah reaches discharge, we consider ourselves very lucky, some families are not so fortunate and are not able to take their baby home and our heartfelt condolences go out to those families.

We are so grateful to both charities. These charities have provided us with the correct location to be with Noah 24/7 whilst having a base within the hospital grounds. We feel strongly about giving back and have therefore set up a fundraising page which we will ask our colleagues, friends, and family to support as much as they can.

Camilla and Rob Miller, Noah’s parents

 

 

 

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