Jack and Harry: A Mother’s NICU Journey

Jack and Harry were born at King’s College Hospital, London on 23rd December at only just 24 weeks. In fact, it was 23 weeks and 6 days. It was a spontaneous birth as they were too excited about Christmas. They were immediately put into their incubators. Jack weighed 724g and Harry 693g. Just big enough to hold in each hand. Sadly after 20 days, Harry passed away peacefully. He was just too small. Jack was still fighting for his life.

Jack
Harry

At 5 weeks old, Jack was diagnosed with NEC (necrotising enterocolitis) so he had to be operated. It took 4 operations before the NEC was finally banished.

At 5 months old, Jack was eventually diagnosed with retinal detachment as a result of retinopathy of prematurity. He is blind. We were devastated for him considering how much he had already been through. But given the number of times when we could have lost him, it was a miracle that

he is still with us and that is such a blessing.

Eventually after over 7 months in NICU we were finally allowed to take him home. Our little hero home with us on the first night was wonderful, scary and extremely quiet. He was still NG tube fed.

The first year has been one of the hardest but full of joy. He was fed via the NG tube up until he was 10 months old. There was a risk of aspiration to his lungs, so he had to have a thickener added to his milk. He was diagnosed with mild pulmonary hypertension, which was due to chronic lung disease. He was on home oxygen for over 14 months before finally coming off it at the end of October 2015. Since then, he was drinking milk without thickener too.

He is now 5 years old. He goes to a special school for children with visual impairment. He loves it there and has just started piano lessons. He enjoys music and happily hums tunefully to the Incy Windy Spider song. He is walking and wants to do everything himself and has no fear. He is a very cheeky but happy little monkey.

Thanks to the care from all the doctors and nurses in King’s College Hospital NICU, our miracle baby is with us today and thriving. 

Looking back, the first 2 years of Jack’s life, and especially the 14 months after discharge from NICU, has been the most anxious and stressful time of my life. When you are at home, with a baby that’s been tiny and sick for so long, reality kicks in. As a mother and main carer for Jack, I felt so alone. He was not gaining weight. I was under pressure to get him to drink more milk and eat more solids. Yet, he had terrible reflux and was vomiting after at least once or twice a day. This made me more stressed. I was counting calories and volumes every night. It was a vicious cycle that I didn’t know how to break. I felt I was at breaking point. There were times when I felt such a failure as a mother and questioned myself ‘why can’t I get my baby to drink more?’ Your mind plays tricks with you. You have no one by your side, who can understand what you are going through, who can help you.

My only source of support was from another mum, with whom I kept in contact with via text messages. Our babies were in NICU together for 6 months. She, herself was also going through anxious times with her little boy. We supported each other with words of encouragement. Hung on to the fact that we were both going through the same difficulties with our babies. And told each other it will get better. She was my lifeline. My friend.

I don’t know how long this went on for. But I remember one particular day when I was feeding Jack, and he wasn’t eating very much, that I thought babies are like adults: some days they want to eat more, other days not so much. And this is OK. Also, I had to remind myself that, this little baby has been through so much, that I should just let him be a baby and not rush things. I kept saying this to myself and eventually the stress lessened.

So just before Jack’s 2nd birthday, I was finally told that he didn’t need oxygen anymore. So immediately removed his tubes. It was a joyous moment to finally see his beautiful face without any tubes or sticky tapes. And I then decided to reduce his reflux medications and then stopped it completely after a couple of months. It took a further few months before all his reflux symptoms disappeared and he was enjoying his food and gaining weight. This was the start of me taking control of things I can control and also just letting Jack be a baby, a little boy.

The anxiety is still there, but it doesn’t overtake my life anymore. I am just happy to be a mummy. The best job in the world.


Facts & Figures

79% of parents said a neonatal stay affected their mental health

Did you know, a ventilator costs on average £25,000

Did you know, reading to your baby in the NICU helps their development?

Leo's Neonatal

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