'It was my responsibility as his mum to be his best advocate' – Esther’s story

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Esther gave birth to Jair at 23 weeks while her husband was away in Uganda. They spent 129 days in neonatal care.

Giving birth to a premature baby was one the strangest feelings for me. The experience is not one you can prepare for because it's not talked about often. I had a nephew who was born at 33 weeks but I just thought he was a tiny baby and never really understood it.

I was in hospital for four days with bleeding and cramps before my son was born. During this time the NICU doctors came and spoke to me about what my options were. I was only 22 weeks pregnant and at this stage of pregnancy my baby wouldn't be saved. The doctors said that if I made it to 23 weeks, then the baby would have a little bit more of a chance.

It was a scary time for me and my family. My husband was away in Uganda working on his visa but my mother and sister were by my side though most of my time in hospital. The doctors gave us an idea of what NICU would be like and the difficulties a premature baby may have to overcome if they make it. Having had a miscarriage at 20 weeks with my first pregnancy, I begged the doctors to do everything possible to save my baby.

After giving birth at 23+3 weeks, my son Jair was quickly intubated, placed in a plastic bag and whisked away to the NICU in an incubator. I didn't even have a chance to hear Jair cry or look into his eyes and debate who he looked like.

About two hours after I had delivered, the midwife returned to tell me Jair was settled into NICU and gave me his birth weight of 1lb 4oz. I was also asked if I wanted to go see him but I declined because I was still in shock and couldn’t comprehend what had just happened. I was also very scared to see what he would look like.

I finally went to visit Jair that evening with my sister and mum. All I can remember was crying over his incubator. When I saw how tiny he was with wires all over his body I just couldn't stop staring and thinking: “How is that supposed to be my baby?”

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Jair just looked so fragile. I think I may have put my hand in to hold him and the nurse did her best to explain what was going on. The room itself was filled with around eight incubators with monitors everywhere and machines beeping. I had never been in such an atmosphere. It felt very intense and my heart would jump each time his machines beeped, which was many.

I had to stay in hospital for three nights myself. When the nurses would come to check on me, I’d panic and think they were there to tell me something had happened to Jair. The day I was discharged was a very difficult day emotionally, because Jair and I weren’t leaving together. I didn't feel like a mum at all. I cried all the way home and slept with my phone very close to me in case they called with news about him.

The hospital had rooms I could book to stay over and we were given 24 hour access to NICU but I chose to stay at home because we lived nearby. In the days that followed I began to accept my situation and started to come to terms with what had happened.

I got into a routine of arriving at the hospital at 8.00am and leaving at 7.00pm. My sister dropped me off most of these days. While in NICU, the days were filled with expressing, doing Jair’s cares and just watching my baby grow as I sang, read and talked to him.

I started doing Jair’s cares on the second day and I was very nervous at first. My hands would be shaking as I tried to wipe his body or change his nappy but the nurse was really good and patient with me. It took a few days to gain confidence and do it without any support.

There was encouragement from most of the nurses and medical team for parents to get involved in their baby's care. Personally I felt this helped me cope with the experience and also it helped me feel that I was a mum. It’s so easy to feel helpless while your baby is in NICU but being involved helps you feel empowered. I also made sure I was there for most of the ward rounds to hear what was said about my son's care. I often voiced any concerns I had because I felt it was my responsibility as his mum to be his best advocate.

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The first time I held my baby was after a week in NICU. I came in that morning and the nurse mentioned she would be changing Jair’s incubator and asked if I wanted to hold him. I was quick to say yes even though I was nervous about it because he was still ventilated and had lots of wires all over him. I didn’t hold Jair for long but it was an amazing feeling to have him in my arms.

The NICU journey is a very challenging one, it can often feel very long and gets lonely at times. I felt exhausted mentally and physically most of the time. When I gave birth it was like my world had been stopped and it was now all about my son's survival. My mind, energy and time were all focused on NICU. There wasn't room for anything else and I would feel very guilty whenever I wasn't at the hospital. My husband was very far away in Uganda and that took a toll on our relationship. I did my best to share as much as I could with him but by the time he managed to come over, we had spent 100 days in NICU.

As I went through the many days in hospital, I couldn’t wait to get my baby home. From the first day we stepped in there all I could imagine was that day when we would walk out with our baby in a car seat and not have to come in again. I was told most babies would be ready to go home around their due date but micro preemies should expect to be in hospital for at least five months. I prepared myself mentally for that length of time and was shocked when I was told Jair was doing well and ready to go home in time for his due date.

I wasn’t really prepared for this and felt a mixture of emotions. I had the excitement of my baby being well enough to come home mixed with the uncertainty of how we would look after him at home without the medical team and equipment supporting us. I hadn’t done much baby shopping either because I never really imagining he would be home so soon.

Altogether we had spent a total of 129 days in NICU. When he was finally discharged it was a very emotional day for me but I also felt a huge sense of achievement.

Jair is now almost two and very active. I look at him every day and I feel very blessed because he almost didn’t make it. The experience was a huge eye opener for me into the world of prematurity and I am grateful for charities like Bliss that continue to raise awareness about it.

As challenging as the experience was, I felt like I was watching God at work knitting my son together and I feel privileged to have experienced that.