85 days of change and worry - Natasha’s story #MyNeonatalStory

At 23 weeks, in February 2019, I started having issues with my pregnancy.

We had just had our 20 week scan and found out I was having a boy. As we already have a daughter, we were absolutely delighted and excited for our boy to arrive.

The next three weeks, however, were some of the darkest, scariest times of my life. I was constantly in and out of hospital and told my son could come at any time. Conversations with doctors where we heard how our son may not make it were hard. I remember thinking, every single day he’s still inside me is a blessing and the longer I can hold on to him the better his chance of survival.

At 26 weeks and three days I was already in hospital when I went into labour; seven minutes and four contractions later my son was born.

He was born in good condition and holding his own at a tiny 2.2lbs. Seeing my tiny son wrapped in a plastic bag with his face covered by a mask was so hard. I managed to have a kiss with him before he was taken to neonatal care.

My partner went with him as I didn’t want him to be on his own, but it felt awful being apart and not knowing what was going on or how he was doing.

Once I was ready, I was taken to the unit and saw my tiny son in his incubator with so many tubes and wires coming out him. I stayed within the hospital that night and my partner in a nearby hotel, which all felt strange and lonely.

I was greeted by a nurse as I arrived on the ward at midnight to talk about hand expressing. I was so tried and not ready to sit there and have a conversation about this, but I knew it was the best possible thing I could do for my son. I felt totally helpless so doing this helped me feel connected to the situation and was the best thing I could do for him.

I remember waking at four am and walking down to see him. It was nice as so much quieter than those first few hectic hours of his life.

My son was born with patent ductus arteriosus (PDA) and chronic lung disease. He needed a lot of oxygen, high flow and had an NG tube. Those first few weeks became a blur of watching stats, levels, and a lot of terminology that I didn’t understand.

My son’s condition was always changing; I never knew what I was walking into, whether it was an okay day or things had worsened.

It didn’t take long before my new normal was expressing around the clock, early morning drives to see him, kangaroo care, feeding and doing his cares. I become an expert in all the medical lingo to the extent I would be asked during ward rounds to tell them his medical history.

The hardest thing to come to grips with while on the unit was his ever-changing condition. I would leave around teatime and call before bedtime to check in with him and the situation would have already changed - not always for the best. Being away from him at night and coming home without him was tough. I was also splitting my time between the hospital and my two and a half year old at home who would sometimes ask me not go to hospital.

Moving to a high dependency unit (HDU) around six weeks in was very scary as, again, a totally different environment where the round the clock one to one nursing just wasn’t there. There where staff everywhere, but not that one nurse who sat by my son’s incubator watching and looking after him.

Our time on HDU was all about getting Casen stronger and off high flow. Keeping an eye on his PDA was a constant battle; I worried if he was going to surgery or if it will close with medication.

After 85 days, four blood transfusion, a number of different medications for his prematurity, two sleep studies and the constant need for oxygen and high flow - we were going home a week before his due date weighing a tiny 4.2lbs!

It was really hard at first having this tiny newborn on oxygen and a two and half year old toddler.

After being home for five days Casen was taken ill and rushed back into hospital where we spent another week. As his oxygen levels where not quite right, he needed more than what we were discharged on.

Casen spent eight months on home oxygen and after many, many sleep studies and slowly reducing he was rid of it.

While in SCBU, Casen was given medication to try to close his PDA, unfortunately it didn’t work so at eight months he had to have surgery on it.

After everything we had been though with Casen we were about ready to try and put all this behind us and start enjoying our time with him. Unfortunately, Casen’s first Christmas saw him back in hospital with Bronchitis and back on oxygen. He had two readmissions in the winter of 2019 which I found really hard as it just brings back so much worry and stress from his early arrival.

By Casen’s first birthday in March 2020 we had turned a corner and ready to start normal life and then the pandemic hit. We have shield for 12 months for Casen to get bigger, stronger and be less vulnerable.

He is now a beautiful two and a half year old. He still has issues with his breathing, uses inhalers and has already this winter (2021) spent some time in hospital due a nasty chest infection and needing a little extra help.