My little boy was diagnosed with Chronic Lung Disease while he was still on the neonatal unit. I wasn’t aware of the diagnosis until I saw it on some transfer paperwork when he was moved to a more specialist neonatal unit. I didn’t fully understand the diagnosis or what it meant for my baby boy’s future. So I asked.

I was told that due to my son’s Hydrops Fetalis condition his abdomen was so swollen that the fluid was putting a lot of pressure on his tiny lungs. This meant he couldn’t breathe on his own. He was intubated so that his body could have a rest. Unfortunately, intubation left behind scar tissue in the lungs leaving my baby prone to having issues with his lungs.

The doctor did say when my son got older if he still had issues with his lungs then the diagnosis would likely change from Chronic Lung Disease to Asthma. Asthma is a term I’m much more familiar with. It sounds a lot more treatable and manageable than Chronic Lung Disease.

In the early days

During the first few weeks my little boy was intubated but he had other ideas. For four weeks he must have tried to pull the tube out at least every other day. His oxygen saturation levels would plummet each time he removed the breathing tube. Each intubation would have contributed a little more damage. At the end of week four he was transferred to a different hospital and the doctor who took over his care decided to see what happened if he left the breathing tube out just a little longer.

A premature baby in his incubator
My little boy in his incubator

The result amazed us! We went in for our visit surprised to find a new contraption helping to get oxygen into my baby boy. He had successfully graduated onto CPAP. This contraption covered his nose and mouth and the pressure helps to open the lungs but also allows baby to breathe on their own a little.

Over the next few weeks all he needed was nasal prongs to get the additional oxygen he needed. It took a long time for him to be able to breathe on his own. For days he was on the lowest possible setting of 0.01. Every time they tried taking him off this his oxygen levels dropped too low. It was so frustrating as it was the smallest whiff of oxygen but he just couldn’t do without it! Then one day we went in and the nurses hadn’t dared to remove the prongs yet but he was breathing air. It was amazing news!

Going home with Chronic Lung Disease

My little boy was discharged with a lot of medication but none of it was for Chronic Lung Disease. He was doing amazingly well and nothing was needed. After 4 days of being at home though the unthinkable happened and my baby boy turned blue and went into respiratory arrest. Our little baby boy was in my husband’s arms who’s regularly trained in CPR so he began mouth to mouth and chest compressions. Our son whimpered back to life as the first ambulance turned onto our road. We were rushed back into hospital where he recovered from bronchiolitis. The next time his chest sounded bad he was prescribed an inhaler to try and help his airways.

For the next year my little boy was in and out of hospital. His lungs just couldn’t cope when he caught the slightest cold and we ended up being regulars on the children’s ward. I had a hospital bag packed for me with spare clothes, wash stuff, towel etc. The same was packed for my son with a few toys and books too.

My little boy recovering in hospital after being resuscitated at home
My little boy recovering in hospital after being resuscitated at home

I was always on edge and monitored my baby boy’s breathing vigilantly. On many occasions I picked up on when he was about to be poorly and quickly had him back at the hospital. Often on the initial assessment the monitors would pick up that his oxygen saturation levels were fine. By the time they were trying to decide if I was being over cautious and could actually send us home his sats would plummet and we ended up being admitted.

The turning point

Once my little boy reached about 18 months old he seemed to do much better. He still caught colds and his breathing would become laboured. Luckily his oxygen saturation levels never dipped low enough to need a hospital stay. It finally felt like his little lungs were becoming much stronger.

I still worry at every cold he gets and monitor him closely. I am pleased to say he hasn’t been admitted to hospital now for over 2 years! We can manage his symptoms well with his inhaler and Calpol. I feel hopeful that he will grow out of this condition though. Hopefully in a few years he won’t even need his inhaler.

Did you see…

Did you see our last blog where I wrote about my experience of a birth with a term baby

Also did you see that our NICU diaries are now available on Amazon! There are 5 diaries to choose from:

Green diary with duckling, dinosaur and giraffe
White diary with duckling, dinosaur and giraffe
Duckling diary
Dinosaur diary
Giraffe diary