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. 

good news so far

The eye doctor came to visit Maisie and is happy with her progress so far and there doesn't seem to be any retinal damage. Maisie's eyes have improved but they still need to be monitored carefully and will be checked again on Thursday.

Maisie was breast feeding again and is getting better at it. Mummy is just about keeping up with Maisie's milk supply as long as we are in early to visit. Maisie had a bonding session with her big sister Meghan helping look after Maisie by helping to change her bed and dressing her in one of her lovely outfits.

Mummy and Daddy will be meeting with the consultants on Tuesday morning to talk about what is next for Maisie, they are looking forward to find out what the plan is.

Maisie had a good day with lots of sleeping. Her oxygen is still 100% but we're sure that part of the plan will be to reduce this.

a lazy day for some

Maisie put on another 50g which is great but not for Mummy as this means that Maisie's feeds increase.

Zach drove Mummy and Daddy to the hospital early to get milk to Maisie on time and then Daddy and Zach left Mummy as the hospital while they went to Zach's race meeting.  He came a fantastic second.

Meanwhile Meghan spent a busy day at work followed by a party to mark the end of the Pittenweem Festival and a very busy week.

Maisie continued to breast feed and seems to be enjoying it a lot (nearly as much as Mummy). Maisie's heart rate has been quite high again so the consultants have put Maisie's dose of Sildenafil back up to see if that will help reduce it. Maisie's oxygen saturation is still in the low 80's and her supply is still at 100%.

Aunty Eleanor and Uncle Carl visited and brought a new wee outfit and a lovely little music box. Thank you.

what a perfectly lazy day. 

yet another lovely day

Maisie is growing so quickly that Mummy's milk supplies were running short, but don't worry Mummy wouldn't let Maisie run out of milk, Mummy and Daddy were early to visit Maisie - it helps that Daddy is quite a fast (and safe) driver when required.

Maisie dreaming away just before her busy day started

Maisie's oxygen supply had been gradually turned down and got as low as 94% before going back up to 100% but this was because Maisie's day was so busy. During this improvement of oxygen supply Maisie sats. didn't fluctuate very much at all and this continued for the rest of Maisie's lovely day.

Maisie was breast fed today for the first time which made Mummy really happy. This should also help increase Mummy's milk production for Maisie. Maisie is getting quite demanding now that she is growing.

Maisie breast feeding for the first time......
(Daddy wasn't allowed to take  pictures) 

It was a busy day, breast feeding followed by visits from Uncle Douglas, Aunty Margaret and also Aunty Manu who once again provided a wonderful tupperware tub with dinner.

It really was a busy day for Maisie as once all her lovely visitors had left it was time for Maisie to have a bath. Everyone was excited about this including the nurses. This was Maisie's first bath and she really enjoyed it;

What's the fuss, it's just my first bath.....

It was another lovely day! 

it fits

The Eye doctors came to check on Maisie - the special drug seems to be doing the job already. The ROP is receding. There doesn't seem to be any sign of infection as yet and there is no damage to the lens. It will not show up for a couple of weeks if there is any problem with the retina. 

The eye doctor will be back Monday for another check up. 

Maisie has put on 50g more and weighs 1865g or about 4lb 1.5oz. Mummy is only just keeping up with supply or milk. Other than the weight gain all is normal for Maisie. 

At last Daddy something that fits me - Thank you. 

Maisie managed to fit into the smallest item of knitware - I am sure you will agree that she looks very pretty. Mummy took the photo. 

bright eyes

Maisie's blood gases have improved a little and hasn't had many desats.  but she is still on 100% oxygen.

The procedure on Maisie's eyes went well. Maisie was un-phased by the whole thing and had no desats. or bradys or tachys - Maisie seemed quite chilled. The eye doctor said that Maisie was better than when he does the normal ROP check.

Will I really grow this big Daddy? 

Maisie's eyes had continued to get worse so it was good timing to administer the drug into Maisie's eyes. The drug should start to take effect over the next few days. 

The eye doctor will have a quick look tomorrow to check that everything in Maisie's eyes is okay and then will see Maisie again next Thursday to check that the drug is working. 

Maisie continues to get more (oversized) clothes as you will see the latest collection had a very appropriate dress for today. Thank you very much Rory for Maisie's present.

all set for tomorrow

Aunty Rhona - how big do you think Maisie is? 

Maisie is getting bigger and now weighs 4lbs which is 1,815g.

Thank you to Aunty Rhona who sent a couple of outfits for Maisie.

One of them is particularly awesome - Maisie will just have to grow a bit bigger before they will fit. Maisie will model the full outfits when she gets big enough to strut her stuff on the catwalk.

Maisie is almost big enough to fit into some of her knitwear so if you were one of the kind people to have knitted for Maisie your handy work may appear in a photo soon.

What is this meant to be Daddy? 

The heart doctor studied Maisie's ECG from yesterday and it showed that the sildenafil  has not really had any effect.
Maisie will be weaned off this drug so to reduce the number of medicines that she is taking.

Not sure what the plan is to help Maisie's lungs - Mummy and Daddy will meet the consultants soon to discuss the next steps.

Earlier today Maisie showed the consultants some pilate moves and finished off by doing a few press ups - she is getting stronger.

Tomorrow is the big day for Maisie's eyes. The procedure will be performed at 2pm and should not take very long. Maisie knows that you will all be thinking about her and praying that the procedure goes well.

Mummy and Daddy haven't told Maisie that this procedure is a little experimental and that the drug she is receiving is not actually licensed for the treatment of ROP (Retinopathy of Prematurity) - they didn't want to worry her. It is described as an"off license" use of a licensed drug. Don't worry it's all above board and in any case Daddy and Mummy have given consent.

Don't tell Mummy

Maisie was a little naughty again being a little sick and then pulled her feed tube out for a second time today. Mummy was out milking while this happened so don't tell her that one of the kind Nurses changed Maisie's bed while Daddy grabbed a bit of cuddle time with Maisie.