The immature respiratory systems of Smidge and Smudge have taken a bit of time to get started, but after some progress, and setbacks, we’re definitely making giant leaps forwards.
Smidge and Smudge both had some infections, which knocked them sideways. Smidge’s gut had slowed down, and he was very restless for a few days but the nurses took bloods, found out what the infection was and could treat him.
Smudge had a partially collapsed lung due to a collection of air in her stomach. She was on the ventilator for about 10 days in total, and wasn’t coping well with being weaned down to lower pressures. However, she has now stabilised, and has come off the ventilator and on to the CPAP breathing support.
Breathing Support Levels
The levels of breathing support are:
- Ventilator – this machine does all of the breathing for the baby. The tube goes down the throat and into the lungs.
- Bubble – a breathing support machine that uses water to provide a constant high pressure (and literally does make bubbles) – the baby is doing the breathing though. Uses a mask over the nose.
- CPAP (bi-phasic) – Continuous Positive Airway Pressure – two-pressure levels that support the breathing in, and the point at which they’ve breathed out ready for the next breath. Uses a mask over the nose or nose prongs.
- CPAP (single phase) – maintains a level of pressure in the lungs to keep them partially inflated, ready for the next breath. Uses a mask over the nose or nose prongs.
- High flow – Prongs up the nose with a high flow of oxygenated air that keeps minimal pressure in the lungs.
- Low flow – as for high flow, but with an even lower pressure. Babies can be sent home on this.
- Just increased oxygen in the incubator – no mask or prongs on the nose, but increased oxygen (~30%, air is 21%) in the incubator
- No support – baby out of the incubator and breathing normal air.
When they were born, both progressed from level 1 to 3 or 4 within a couple of days, but as they progressed, they developed chronic lung disease, a common condition for premature babies. Their lungs became less flexible meaning they got tired and had to go back on the ventilator for a few days for a rest. We were told to expect this apparent step-back, but it still felt disappointing.
In the last week or so however, they have progressed from levels 2-4 to having a couple of hours a day on the high-flow (Smudge, level 5) and just the incubator and oxygen (Smidge, level 7)! This is the most positive progress yet, and the blood gases show that they are tolerating it very well.
As they’ve been more stable, we’re starting to have more and more cuddles with them, with the plan that well be able to have a cuddle with each of them once a day. So far, I’ve only had two or three cuddles with each of them – my first cuddle with my son was on Christmas day 🙂
Both Smidge and Smudge are on full breast milk for their weight, now up to 19ml and 15ml every 2 hours respectively, meaning that have come off the TPN (highly concentrated liquid nutrition), and they are tolerating the milk and added fortifier, caffeine and vitamins fairly well. Having all this milk means that their weights have gone from 735g / 1lb 10oz to 1.36kg / 3lb (Smidge) and 825g / 1lb 13oz to 1.23kg / 2lb 13oz (Smudge) in 5 and a half weeks.
Today they had a routine appointment to get their eyes checked. I’d been slightly concerned, particularly about Smudge, that they might have some sight issues, but they were given the all clear, with another check up in a few weeks. Various levels of the breathing support, and in particular not having a steady level of oxygen saturation can affect some cells at the back of the eyes, hence the need for them to be checked regularly.
We’ve now also registered the births, and officially given them names with the registrar, so the twins now have alter ego names used by the doctors and nurses when they don’t want to be overcome with the celebrity status they got from this blog…
The plan over the next week or two is to have both of them extending the length of time that they spend off of the CPAP support each day, as well as coming out for cuddles. At this stage, everything is set to just keep feeding them and growing them until we can lose the enclosed incubators for good.