24 weeks and 780 grams - Olivia's story

Olivia's son Lenny was born prematurely with a congenital heart defect, she describes how her family copes with the 'NICU rollercoaster'.

My son Lenny was born at 24+3 weeks weighing only 780 grams.

I went into premature labour because I had a pregnancy infection called Chorioamnionitis that affects the placenta and membranes, I had no symptoms up to this point.

When Lenny was whisked away by the neonatal team, I felt distraught. All I wanted to do was hold and cradle my baby, I felt lost. I felt that I should have been there to comfort him as his mother and it made me feel guilty that I wasn’t there for him the first 24 hours of his life. I felt broken and useless, although I knew it was the best thing for him being medically attended to, that didn’t stop the fact that all I wanted to do was hold him.

It took four hours to stabilise Lenny. I was recovering while my partner was down on the unit, as my local hospital could not accommodate babies born below 27 weeks gestation, he was waiting to be transferred to the NICU. I couldn’t travel as I had to stay in hospital overnight for observations so my partner took me to briefly see my son before they both went.

Lenny and my partner arrived at the NICU in the early hours of the next morning. As soon as I was discharged, I arranged for my family to pick me up and take me straight there to see Lenny and my partner. I didn’t see Lenny until the day after he was born and this was hard to come to terms with. We were lucky and were offered hospital accommodation to stay in for the next seven weeks at Lenny’s most critical time.

In the first few weeks, it was a blur and I struggled so much.

I grieved my pregnancy, I was going through the hormone changes a new mum experiences - all while my baby was on the Neonatal Unit. I struggled seeing other women with bumps and I used to feel awful about feeling this way. I used to watch Lenny hiccupping inside his incubator feeling emotional at the fact I would never feel him hiccupping inside me. Although I began feeling movement, I had to come to terms with the fact I would never feel his feet and hands pushing and kicking against my stomach, which was something I was looking forward to most in pregnancy.

Lenny was first extubated on day six when he only lasted four hours on CPAP. The team kept trying to extubate him a further three times before he was perscribed steroids to help strengthen his lungs. I remember the consultant explaining to us the seriousness that if he failed to remain off the ventilator on this attempt after having the steroids that there may be other issues as to why he was unable to breathe without the support of ventilation. Fortunately, after three weeks on the ventilator, Lenny was extubated successfully on the fifth attempt.

Lenny was 12 days old when I held him for the first time, and he was a month old when my partner was able to hold him. I would spend all day having kangaroo care, it was the best! The support we received from the nurses to get involved in Lenny’s cares was amazing. They were encouraging and helped us to change his nappy and feed him through his tube from day one, when he was tiny, fragile and still ventilated. When my partner returned to work after two weeks, I would sit by Lenny’s cot side from 8am until 6pm, we would go to our room for dinner and then back up to see Lenny from 8pm until late. I used to confide in the nurses, and I was listened to.

Myself and my partner had to leave the onsite accommodation after 7 weeks and this was incredibly difficult as we would have to travel over an hour there and back each day to be with Lenny and as I don’t drive, it was hard relying on family members. Gratefully, I have an amazing support network that have done all they can to make sure I was there for Lenny. Lenny was only at the NICU one more week before he was transferred back to our local hospital.

After receiving ibuprofen treatment for a large PDA and checking if it had closed, it was revealed that Lenny had a congenital heart defect; a pulmonary valve stenosis.

This turned my world upside down.

Knowing that we would be dealing with everything that comes with being born premature plus a congenital heart defect was hard to get my head around. Each time the ultrasound scanner would come in the room and Lenny had an echocardiogram, my stomach would do somersaults. I would nervously wait to find out if it had improved or got worse – each time, it deteriorated.

An echocardiogram in early September 2019 revealed that the pulmonary valve stenosis had begun to cause problems with the right ventricle of Lenny’s heart. We needed to determine whether intervention would be needed.

During ward round on one Monday morning in the middle of September, the surgeon confirmed that he wanted to operate on Lenny’s heart. Lenny was urgently transferred on the Tuesday ready for the procedure on Wednesday. There are no words to describe the feelings and emotions you have when you are watching your baby be taken down for surgery, I wanted to take the pain away and trade places with him. The two-hour wait whilst the procedure was taking place was the hardest and longest two hours of my life. Thankfully, all was successful and there have been no signs of any problems since then.

A week after the surgery, Lenny was discharged from the NICU on oxygen. Lenny has been home with us for six weeks now and he is still on oxygen, but this is in the process of being weaned. He is thriving and doing amazing, he has even started to smile the last few days! We are so thrilled and finally feel complete and whole as a family at home. I hope my story will give some hope to other parents who are currently riding the NICU rollercoaster!