My two premmie boys needed to be tube fed in NICU

I am a midwife and mama to five – aged from 19 years old to just a few months old! All five of my babies were born prematurely. My youngest two sons Lenny and Percy were born within 18 months of eachother and were both tube fed in NICU. I expressed breast milk for their feeds but just couldn’t wait to be able to nurse them from the breast. These past few years have been an emotional rollercoaster but I’m so happy to have my big family.

Lenny was born very prematurely

Despite having three babies before – who were all born pre-term – absolutely nothing could’ve prepared me for Lenny arriving nearly 12 weeks early in January 2020. He was initially fed intravenously with TPN (Total Parenteral Nutrition) then he was able to start having my milk via NGT (Nasal Gastric Tube). It was tiny amounts to start then every hour / day as he tolerated it they increased.

Once Lenny hit around 32 weeks he started to latch on to the breast and I was led by him. Slow and steady to start with then the top-ups were given via tube.

As he got older the better he fed from the breast and the less he had via tube. This for me was a huge thing as I hated the volumes of feed he was given via tube after a breastfeed. Almost everytime it caused him to have huge desats (oxygen levels getting lower) and his heart rate would dip dangerously low. I lost count of the times he was bagged and masked to get him breathing again.

I lost count of the times he was bagged and masked to get him breathing again.

I resented the tube feeds so much

I won’t lie, I resented the tube feeds! We went home with a tube in and on the way to hospital a few days later for a weigh-in, his alarm went off and he stopped breathing. I had to resuscitate him over my knees in the back of the car whilst my husband drove as fast as he could to A&E. Luckily he was breathing by the time we reached there.

A few days later he pulled the tube out and I requested it stayed out. I felt he was feeding well, his weight gain – although slow – was telling me I was feeding effectively and I was petrified of him not breathing on us again. Frequently his colour would change after a top-up due to the reflux it caused. After that, he thrived and never changed colour on us again or needed any stimulation or resus.

Percy arrived at 31+6

My youngest son Percy arrived at 31+6 in June 2021. He had a tube from the off and again same story. After a few days he showed signs of wanting to feed so we went with his lead. I was able to stay with him on the transitional care unit and was able to establish feeding quickly (with the help of top ups via a tube) as we were together 24/7.

By this time the hospital had an outreach team and we were able to go home under their care and with the tube in. This time around I felt completely different about having the tube in. It meant I was able to take Percy home at just over 34 weeks and I saw the tube as my friend not enemy. I didn’t feel undermined by it, and the fact Percy tolerated top-ups was a huge factor. I was anxious but nowhere near where I was with Lenny. He behaved!

This time around I felt completely different about having the tube in.

The hospital by this time also had an outreach team and we were able to go home under them and with the tube in. I felt completely different this time about having it in. It meant I was able to take Percy home at just over 34 weeks and I saw the tube as my friend not enemy. I didn’t feel undermined by it, and the fact Percy tolerated top-ups was a huge factor. I was anxious but nowhere near where I was with Lenny. He behaved!

The special care service made a world of difference to our family

The extra few weeks I was able to keep Percy in was such a difference in the recovery process. The top-ups helped him gain weight, and have enough energy to get breastfeeding going. I took Lenny home when he was 37+ weeks gestation and feeding was well established, whereas Percy was just over 34 weeks.

In many ways, it’s a huge difference in how they feed so I’ve had to be patient and am thankful for having the tube in and service provided by special care now. It’s made a huge difference to me and our family as a whole.

Donating my breast milk was my way of giving back to the NHS and other babies in need

I’m now pleased to be nursing Percy at the breast and Lenny continue to breastfeed also. Often I tandem feed them which is lovely. I’m happy to say I’ve officially retired my breast pump.

I recently donated breast milk to other sick and premature babies and that will be my last donation. Since having the two boys I’ve ended up donating a total of 50 litres of breast milk. It’s been my way of giving back to the NHS after all they did for me and my premature little boys.

 Since having the two boys I’ve ended up donating a total of 50 litres of breast milk. It’s been my way of giving back to the NHS.