getting ready for 2032

Maisie has now reached the Amazing weight of 2kg (4lb 7oz) it's no wonder that Mummy is having a tough time of keeping production in line with the demand.

resting after a busy morning working out.....

Maisie has been quite active overnight and during the day. Although the consultants have warned us that Maisie will never be a gold medal winning marathon runner it appears that she may be in training for the 2032 Olympics (which could possibly be in Ghana or Kenya?).

Maisie has been doing press-ups, squat thrusts and a Pilates move that I hear is called the Downward Dog - all very good for Maisie as she is stimulating her nervous system which helps her neuro-development.

I wonder what event she would like to enter?

Mummy and Daddy met with the consultants today. There was some very straight talking about Maisie's condition. Maisie is the worst case of Chronic Lung Disease they have see which reiterated to Mummy and Daddy how very ill Maisie is. One of the issues that was made clear is; when Maisie leaves hospital she will be extremely vulnerable to respiratory infection. This is common with premature babies and particularly with babies who have chronic lung disease.

It will be incredibly easy for Maisie to pick up viral infections like RSV (respiratory syncytial virus) so precautions will have to be put in place to keep Maisie healthy  - this will be the biggest challenge . Maisie will have injections of the vaccine synagis each month over the winter which should prevent her re-admission to hospital. The last thing Mummy, Daddy, the consultants or the nurses want is for Maisie to be re-admitted.

All visitors will have to be careful that they do not pass on anything to Maisie (except presents and money which are always gratefully received) and will not be able to visit Maisie if they have been ill. The family will need to have an influenza inoculation to stop us becoming ill so that we do not pass anything on.

Maisie loves her bunny that plays music.
It gives her great stimulation

We were also made aware that we should prepare for Maisie being on oxygen when she gets home. It is most likely the Maisie will be on oxygen for a couple of years. This doesn't mean that she will be confined to the house though, Mummy and Daddy will be also be supplied with a small portable set up to allow us all to escape.

Mummy and Daddy will also be given a lot training on how to look after Maisie and will be tested before taking Maisie home by staying over at the hospital in a room with Maisie to see how they will cope for a couple of nights.

So what's happening next? The consultants have decided to ween Maisie off the sildenafil as it is not having any effect. Maisie's oxygen supply through the Hi-Flow will have the pressure reduced from 6 litres/hour to 4l. This should benefit Maisie as she will have to adjust the pressure within her lungs by herself to cope with this. If Maisie can manage to do this she can try the Low-flow which is just oxygen at a reduced pressure. This will prepare Maisie as it will be very similar to what she will use when she gets home.

Maisie's oxygen was reduced to 4 litres/hour and she appears to be coping well with little change in her oxygen saturation. The amount of oxygen supplied also came down a little to 96% for the majority of the afternoon. This is good progress and probably due to all the cuddles Maisie got from Mummy and Daddy.

Getting My Amazing Maisie home will be determined by her Oxygen and her Feeding being good enough to satisfy the consultants.