Learning to breathe

The last week was a very exciting one and a massive step in Jack’s journey. The NICU consultant confirmed that he is happy for Jack to be in air during the day and in oxygen at night. Completely oxygen free during the day! This is massive for us as now we can go about our day like a normal family without thinking of how much is left in the portable tank before we go out, carrying around the baby seat and the changing bag and the cylinder, thinking about how far the tube will stretch if I need to go and get something from across the room and he’s asleep in my arms etc. I can carry him around with me when I need to – like when he’s being clingy!

Breathing is meant to be second nature from the minute you are born and it is the be all and end all of life. People take it for granted. So how are you supposed to feel when your baby cannot do this most basic life skill for themselves? It’s rough. I’ve gone from watching a machine do it for him entirely to him being almost completely unassisted in just over 6 months. I spend a lot of time watching his chest rise and fall when he is asleep when he’s off oxygen. It’s easy to see that he’s fine when he’s awake and playing and babbling. I still need reassurance when he’s asleep.

I love not having a nasal prong tube and oxygen cylinder trailing after us. It’s ever so much easier to get him from the house to the car and vice versa! He loves not having the oxygen prongs on his face because he’s clearly sick of them now. When he’s got them on he pulls at them and they end up in his mouth with slobber in them. When he’s trying to bury his face in my chest for a cuddle he gets annoyed with them. His days are a lot more comfortable now.

I am so proud of him to have come so far. He’s gone from ventilator to bi-papp to c-papp to high flow to nasal oxygen and now nothing! It hasn’t been without it’s hiccups. Jack came home on 0.2 litres because he failed the sleep study in 0.1. He failed another 0.1 sleep study when he’d been home a while and had to have another after a fortnight. A sleep study is exactly what it sounds like. 12 hours of overnight data is collected and assessed. He needs to stay above an oxygen saturation level of 94% for 95% of the 12 hours. You write down what is happening when the probe is likely not picking up properly, for example his wiggly legs during a nappy change. You write down when he has a feed so they can see whether his level drops during a bottle. The study Jack had in air last week was a borderline result so Dr Bala confirmed he’s happy for Jack to be in air during the day as long as we keep an eye on him for any dips in his level or behaviour. So far so good over the last week.

I love seeing his bare face. I love that he hasn’t got any scratches on his face because he’s not clawing at his nose. I love carrying his car seat out to the car with his bag over my arm and that’s it. No oxygen cylinder on my back. No issues when someone says I can’t take the buggy in somewhere because there’s no longer a massive heavy thing in the tray underneath.

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Oooh look at him all tube and prong free! Happy Jack and happy Mummy and Daddy! I’m also excited because now I can start planning his proper homecoming/naming day type party knowing nothing will be on his face except a smile!

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