Our NICU experience made our relationship stronger – Tilly’s story

Eight weeks in neonatal care was not what Tilly and her husband were expecting when they had their first baby. But Tilly describes how it brought them closer together.

I'll never forget the day our lives changed forever, when I went from getting ready for my much-anticipated baby shower to my waters breaking at 28 weeks. My husband, Jon, and I had tried for a baby for six years. After three miscarriages, we gave in and assumed that having children together just wasn't going to happen for us. We would just have dogs instead, we decided. I was devastated, of course, but I put on a brave face every time someone we knew told us that they were expecting.

Then, out of the blue, I found out I was 7 weeks pregnant. It was an utter miracle and I was over the moon. I had a difficult pregnancy but I can't tell you how much I loved my bump! I would spend hours rubbing it or just laying looking at it with amazement.

But then, at 28 weeks, my waters went and I was terrified I was going to lose my little girl. After painful steroid injections, I was observed on the ward for 24 hours. I was told I had sepsis and that to save my precious little baby, she had to be delivered. It felt cruel and I was worried that she was too little and I was too sick. I felt like I had failed her already.

I had to have antibiotics through a drip, and my hands soon became covered in IV drips, one of which was a magnesium drip for my baby's brain which burned like you wouldn’t believe. It felt like it went on for hours. I wondered if the pain was my karma for letting my baby down.

Our journey in the NICU was the hardest and yet also the most wonderful experience of my life. One of the hardest things was the feeling of guilt as I constantly felt responsible for the fact that Ada was having such a tough start to life.

I met some wonderful people, one of whom I'm grateful to call one of my closest friends. She became my shoulder to cry on and I was hers. We knew how each other felt without us having to even say a word. I sat for ten hours most days having skin to skin with my beautiful baby girl and with her on me, I felt whole, like she was healing me.

It was also the time when my relationship with Jon was at its strongest - we were just like one person. I needed him and he needed me for both of us to feel like we would get through it. He was amazing – he would set up my pump for me to try to use for the hundredth time, he would make sure I was eating, he would do the school run with my stepson and drive us both to the unit because, after having a c-section, I couldn’t drive.

We would stay with Ada all day and then he'd have to go to work for the night shift. He was living on maybe three hours of sleep a day, but he didn’t want to leave Ada so he would fall asleep with her in his arms or sleep with us both next to her incubator.

The neonatal unit at Bath were amazing and we owe them everything. Thanks to them, eight weeks later, our baby girl came home. Our relationship had to adjust as we found a new routine. Ada has had to go back into hospital four times because of bronchiolitis and the stress and worry of it never gets easier. In those times, I have had to be Ada's main caregiver while my husband is at home looking after my stepson, of whom we have full custody.

The lack of sleep, juggling looking after the two children, and the fact that painful memories flood back every time Ada has to be taken to hospital in an ambulance is certainly a challenge. But we all have an incredible bond with Ada, who is always smiling and reminding us of how precious she is.

She is my hero! She is so full of life and happiness that I'm utterly proud to call her my daughter. And finally, after a hard year, I know she is proud of her mummy too because it wasn't my fault that I got sepsis and she had to be born early. I didn't fail my baby. We just had a different journey home.