just another day

Maisie had another good day, she did all the usual things; lots of bottle feeds, breast feeding, Kangaroo care with Daddy and playing in her chair.

Sometimes things are just too much fun

Maisie's oxygen supply is back up at 42% however the nurses have reduced her flow to 3 litres per hour. This is good news as the next step will hopefully be the Lo-flow which Maisie needs to get home.

Maisie lost a little weight over the last couple of days but this was expected as Maisie is using up a lot of energy with all the bottle feeds. All the breast feeding makes up for this as it makes Maisie very sleepy and this gives her time to grow.

All tired out from playing and feeding

playing in the garden

Maisie gave Daddy a wee scare today when he arrived. Maisie had a de-saturation the nurses were dealing with. Maisie does have the occasional desat. which she recovers from on her own however this one took a short time to rectify. Once Maisie had recovered she replenished her energy by taking a feed from Mummy.

Maisie oxygen saturation settled down in the 80's dropping slightly into the 70%'s every now and then which Maisie rectified on her own. This could be due to Maisie being tired. Maisie managed to have just bottle feeds during the last 24 hours which is a great improvement but very tiring. This is a step closer to getting home if Maisie can manage to take her feeds well.

Maisie had another busy day; she was out in her chair during the morning, had lots of feeds, cuddles and breast feeding with Mummy and more cuddles and stories with Daddy. Even though Maisie's sats were up and down the nurses managed to reduce Maisie's oxygen supply to 38%. Another step closer to home.

Hearing Charlie and Gracie's letters made Maisie feel better

Maisie got a parcel from Uncle Jim, Aunty Helen and her cousins Dan, Charlie and Gracie. It was full of beautiful outfits and bibs. Thank you so much.


Maisie especially liked the pictures and letters that Charlie and Gracie sent. Maisie thought that their hand writing was very neat and their drawings were excellent. Maisie could imagine just what it would be like to be out playing in the garden with her big cousins.

It looks like a lot of fun and Maisie can't wait to meet Charlie and Gracie so that they can go out to play. Maisie has something else to dream about now.

Daddy loves Maisie too

and keeps on growing

Maisie is continuing to grow and is 2.55kg - 5lb 10oz. Maisie's oxygen supply continues to improve at 40% oxygen and Maisie's oxygen saturation is in the 90%'s. Maisie's growth is helping her a lot and we hope to see Maisie back on the Low-flow soon. For this to happen Maisie's saturation needs to be maintained in the high 90%'s so that the consultants can start to lower Maisie's oxygen flow rate which is currently at 4 litres.

Maisie's saturation improves when she is being fed especially when fed by Mummy and also when getting hugs. During one of Daddy's amazing hugs Maisie's oxygen saturation hit 100% !

Maisie had a nice relaxing bath followed by chilling out in her chair. While Maisie was listening to one of Daddy's favorite albums, The Bends from Radiohead her saturation stayed in the high 90%'s. Maisie appreciates Daddy's taste in music and is looking forward to his next recommendation to see if that will help her as much as the choice today.

"Mummy this isn't giving me any milk!" 

due date

28th August 2012 was Maisie's due date. It is Amazing how far my Amazing Maisie has come since the 19th May.

Maisie had an amazing day; her oxygen supply is down to 42% and her oxygen saturation is in the 90%'s and the nurses told us that Maisie sucking is going very well and Maisie will soon move from 3 hourly feeds to feeding whenever she would like fed - demand feeds. Amazing.

Today Maisie was introduced to a very special toy that Grandpa left for her. Maisie will not meet her Gran (Daddy's Mummy) as she went to heaven a few years ago; we all know that Gran is looking down on Maisie, watching over Maisie to keep her safe and well. To make sure that Maisie knows this she has Gran's old Teddy Bear beside her where we are sure Gran would like to be.

Gran's Teddy looking after Maisie. 

100 and a VIP visitor

It was Maisie's big sister's sweet sixteenth birthday today she was a very lucky girl and got a lot of lovely gifts. Meghan is also looking forward to an exciting weekend away with her friends.

"how gorgeous am 1?"

Maisie had a day of celebration too. Maisie is 100 days old. She put on her Sunday best to celebrate.


It is a very special occasion turning 100 days old on Maisie's ward and as such the nurses gave Maisie a certificate and arranged for Scotland's Deputy First Minister to take time out of her busy day to visit Maisie.

In case there was an opportunity for a photo shoot, for obvious reasons, Daddy was chosen by the family to represent them.

It was very kind of Nicola Sturgeon to visit Maisie. She asked lots of questions about Maisie and Daddy told her how Amazing Maisie is. He also told Nicola how fantastic the team are that look after Maisie. Nicola was at the hospital to officially open the new building.

It's Maisie's foot that the Deputy First Minister is tickling! 

It was a busy day; Daddy had lots of playtime with Maisie as she was wide awake most of the morning.

Then there was a wee leaving party for one of Maisie's consultants who is moving on to other things. She is going to miss him.

And then the great news that one of Maisie's roommates went home today after 76 days on the ward. He gave Maisie some lovely presents - she is so lucky - Thank you.

All this excitement took up a lot of energy so she stopped for lunch. This time Daddy got to bottle feed her;

Maisie - your not meant to fall asleep while feeding. 

Maisie is enjoying food so much that she has put on another 50g and weighs 2.53kgs - 5lb 9.5oz. Maisie's oxygen supply is 49% and Sats are in the 80%'s.

After lunch there was time for more visitors - Grandpa and Grandma Jan came to visit. Maisie did well and stayed awake to see them. Maisie enjoyed their visit judging by all the smiles she gave them. Thank you Grandma Jan for the knitted Polar bear - it's really cute.

Maisie enjoyed holding Grandpa's finger. 

What a busy day! 

a snug fit

Maisie had a lovely day with the usual mixture of sleeping and playing. Grand Aunty Eleanor and Uncle Carl came to visit just as Maisie was starting to wake up which was perfect timing. 

Maisie's oxygen supply is down very slightly and her oxygen saturation in the mid 80%'s 

Mummy bathed Maisie as there might be an important visitor tomorrow. Maisie needs to be smartly dressed  in case and Mummy has chosen the outfit that she's to wear. 

Maisie is rapidly growing out of some of her clothes; 

This could be the last time Maisie will wear this.....

funtime

Mummy and Daddy were very busy today and so were late to visit Maisie.

Maisie had a busy day. The wonderful nurses reported that Maisie had been wide awake all morning taking in the world around her in her usual inquisitive way.  Maisie was also up and about sitting in her big girls chair taking in some tunes.

All this lead to a very tired Maisie, by the time Mummy, Daddy and Meghan arrived Maisie was in a deep sleep having lovely dreams;

What do you think Maisie is dreaming about? 

Meghan asked what Maisie could be dreaming about? Daddy said Maisie was dreaming of running along the beach with Megan the dog. This then lead to quite a discussion about if Maisie hadn't experienced anything and doesn't know anything then how could she dream about anything? The Nurses settled it by explaining that young babies like Maisie dream about Angels.

Maisie is still growing and today tipped the scales at 5lbs 7oz - 2.48kg.

Maisie seemed to be stirring so Daddy took the opportunity to get some cuddle time with Maisie while Mummy was away milking. This prompted Maisie to wake up and play. Maisie kept herself entertained by pulling faces at her sister. Judging by Maisie's big smiles she thought that this was very funny.

Mummy soon returned and then it was her time to play. Maisie had a lot of fun (and so did Meghan).

" give me Nicolle back please" 

playtime with Daddy

Maisie is growing and is 43cm tall which is 1 foot 5 inches. At this rate Maisie will be growing out of her more clothes - the large clothes Daddy bought are now fitting Maisie. It's a good job that Grandpa and Grandma Jan sent some new outfits. Thank you very much.

Maisie and Daddy spent more time playing today
It's fun when Maisie is awake. 

Maisie's oxygen supply is still at 50% and her oxygen saturation has improved and been in the 90%'s.

but not so much fun when sleeping  :) 

Daddy's girl had a lovely afternoon

lovely visitors

Maisie had some lovely visitors today who bought Maisie some lovely wee outfits. I'm sure that she'll grown into them very soon. Maisie was upset that wee Joshua couldn't visit her - maybe another time.

Another good weight gain for Maisie who's now getting heavy at 5lb 5oz - 2.41kg. She's loving the bottle.

Maisie's oxygen supply was reduced to about 47%  and her oxygen saturation is creeping up into the high 90%'s every now and then. A steady improvement.

The eye doctor came to check Maisie's eyes and all continues to be well. He'll be back in to see Maisie in a fortnight.

Bedtime bear is now joining Maisie for cuddles. Maisie is sleeping well but Bedtime Bear makes it even better;

Eventually Maisie has grown bigger than Bedtime Bear so is now
happy to have a cuddle and share her bed 

Maisie's wardrobe is rapidly growing and the latest edition was a hand knitted jacket from our wonderfully kind neighbour - thank you very much, Maisie is going to love it - it's so soft. 

At last time to sit down

Maisie got yet another toy; a rabbit from Nicolle called Nicolle, Thank you. It was given to her several days ago but had to go into quarantine as the nurses thought she might be ill. You may spot what was wrong with Nicole;

don't worry Maisie they're just beauty spots

Daddy and Zach were first to visit Maisie as Zach had been for an interview at college and it was good news - Zach starts college in September! Back to being a poor student.

"Wow my brothers hand is big"

Maisie continues to get stronger and her oxygen supply is at 50% but the pressure is down from 6 litres to 4 litres and her oxygen saturation continues in the high 80%'s

Maisie slept well and was feeling strong after all the milk she's been drinking so decided to take the next step and have a wee sit down in the fancy rocking chair that Uncle Douglas and Aunty Margaret gave to her.

"Hey, check out my big girls chair,
Thank you Great Uncle Douglas and Grand Aunty  Margaret
 I am very spoiled." 

Maisie loved playing in her new chair;

"Such Fun!" 

and it's also very comfortable when Maisie's finished playing;

all tired out

Lucky Maisie

daddy's little froggie

Maisie had a great day - as long as she was being fed

Feed me..........

Maisie loves being on her bottle and is putting on lots of weight and now weighs 5lb 1oz or 2.3kgs.

Maisie had a lovely day playing with Mummy and Daddy. The only downside to the day was when Maisie needed to have her vaccinations. Maisie had a couple of injections, she was very brave and only cried fleetingly before getting big hugs from her Daddy. Maisie is learning that Daddy will keep her safe and look after her.

Maisie's oxygen supply is at 50% and her saturation is stable. Maisie's blood gases are also very good especially her carbon dioxide levels.

Daddy treated Maisie by dressing her in one of Aunty Rhona's outfits;

"What's that you're saying? .......really?
 but my Daddy told me this outfit was cool!" 

"not to worry, check out my matching bootees"

Impatient patient

Maisie was determined to get off the CPAP and seemed to spend most of the morning wrestling with her mask. This did not really help Maisie as her mask couldn't get a proper seal.

It was decided that the impatient little madam was to get her own way. The consultants decided that as the CPAP was uncomfortable for Maisie and that she could take the next step and go back onto the Hi-flow. This is the machine that Maisie spent a lot of time on at 100% oxygen supply. It is lovely to see Maisie's hair again.

"Mummy all  this sleeping is good for me

 - you should try it too!"

All the sleeping and growing Maisie has done over the last few days has really helped her and Maisie is currently on 48% oxygen supply. This is an Amazing improvement.

Maisie is on 3 hourly feeds and is managing well from the bottle and from Mummy.

3 months old

Maisie put on a lovely new frock as it was a Sunday and she wanted to be smart for Grand Aunty Eleanor and Grand Old Uncle Carl coming to visit.

a lovely dress but not
 a great picture - Sorry Maisie

This is not a great photograph however Daddy thinks that it is quite funny how Maisie's legs look so short compared to her arms.
Don't worry Maisie's legs are just folded up inside her outfit.

Maisie is doing well; Oxygen supply is down to 38%, her blood gases are good particularly the carbon dioxide which has reduced. Maisie's oxygen saturation is around about 80%

Maisie continues to feed from the bottle and from Mummy though when Maisie is sleeping she gets tube fed so that her growing time is not disturbed.

loving the bottle......

Maisie had lots of Mummy time today, breast feeding, cuddles, playtime and of course the all important sleeping.

Maisie is 3 months old today and all the sleeping is helping; Maisie is very nearly 5lbs - 4lbs 15oz or 2.24kg

Zach's turn

Maisie did a lot of sleeping again which helps her grow and even Mummy thought the start to the visit was a little dull.

Maisie is being watched over by her lovely toys apart from
the lazy frog who's sleeping on duty

Maisie is having her feeds every 3 hours and has moved to the next stage; Maisie is still on Mummy's milk but instead of being tube fed Maisie has been taking to the bottle (just like a lot of her Uncles do).

When Mummy is around Maisie will be breast fed and when Mummy cannot be there Maisie will get Mummy's breast milk from a bottle. This is great progress.

Maisie is still on the CPAP and the oxygen supply has improved slightly to 42%. Maisie's oxygen saturation has stayed fairly constant with a couple of small dips that she recovered from quite easily on her own.

Maisie got another bath  as she was a wee bit smelly and while she was enjoying being pampered her big brother Zach changed Maisies bedding. Maybe now Zach knows how it is done he'll manage to do his own.

an afternoon with Daddy

Mummy had to go to the dentist so Daddy had Maisie to himself. Maisie spent the best part of the afternoon sleeping and Daddy decided that babies can be quite boring while they are sleeping.

Maisie was re-weighed and is 2,210g or 4lbs 14oz, she really is getting big, Maisie's heart rate is still good and her oxygen supply around 48%. Maisie's oxygen saturation is down a little at about 80% but nothing to worry about.

The last of the test results are back and Maisie does have a wee infection in her nose which she will take a course of antibiotics for. It doesn't seem to be affecting her.

When Maisie did wake up Daddy played with her and her toys and read Maisie the paper. Maisie also did her usual trick of waiting to wee-wee until Daddy had taken off her nappy. Daddy is sure that Maisie does this just so that Daddy gets to choose her outfit (he also has to change the bed). This is becoming a regular occurrence.

Daddy and Maisie  got a couple of hours Kangaroo Care together which was of great benefit to both.

It was an amazing afternoon.

clothes that fit

Maisie is back to her wide awake and alert self. It was lovely to see Maisie looking well today and taking in the world around her. Maisie was playing with her toys and even tried to suckle one of her orange owl's feet.

"do you think Mummy will notice if I take her
pretty necklace while she sleeping?" 

It's good for Maisie to learn how to suckle so Daddy replaced the owls foot with Maisie's pacifier. The Nurses say that she is a bit like Maggie from the Simpsons and can hear her sucking from across the ward.

Maisie balanced out all her activity for a while chilling out having Kangaroo Care with Mummy. 

Maisie's oxygen saturation level is good, Maisie's oxygen supply and pressure is good and Maisie's blood gases are good.

Maisie has put in weight and is 2,125g or 4lbs 11oz - which is good!

Daddy even found clothes to fit Maisie so she's looking good - eventually Maisie fits into something that Grandma Jan knitted. Thank you.

taking time to rest after a good day

all in all Maisie and Mummy and Daddy had a good day. 

kangaroo care helps

Maisie was quite bright and alert today which was lovely to see. To help with Maisie's recuperation Mummy gave her some Kangaroo Care which Maisie loved very much.

Maisie missed having cuddles over the last few days

Maisie's oxygen supply continued to improve and got down as low as 46% along with oxygen saturation of about 90%

The consultants would like to put Maisie back onto the low-flow if her oxygen can get down into the low 30%'s. This will bring her a step closer to coming home to see her newly painted room.

very pleased

I love my Zacky, it really helps me

The CPAP machine is really helping Maisie and her oxygen supply is very good at only 50% - that's Amazing. Maisie's oxygen supply has not been this low for over 8 weeks.

Maisie's blood saturation is also up at about 90%.

It would seem that Maisie benefited from the time she had on the Low-flow albeit that it tired her out and gave us a scare.

Having a break from the Hi-Flow and the Low-flow is good for Maisie and being able to rest while on the CPAP is allowing Maisie to grow - over the last 2 days Maisie has added 70g to her weight (2.1kg or 4lbs 9oz)

Daddy, why do you keep doing this to me? 

Mummy gave Maisie a needed bed bath as the Nurses were complaining that Maisie feet were a bit on the smelly side (not as bad as her brother's though).

Daddy changed Maisies bed and also took the opportunity to dress her.

The Consultants are very pleased with Maisie progress. 

A UK first

Maisie is stable and had no more significant desaturation or bradycardia. Maisie is still on the CPAP and her oxygen level is better than it was previously when on CPAP. Maisie is off her drip and back on Mummy's lovely milk. The nurses tried Maisie back on the High-flow but she didn't cope to well.

So far there is no sign of infection which is good news, more results are still to come which are not expected to be positive for infection.

story time 

Aunty Rhona visited again and read a couple of stories from the books that she brought to add Maisie's ever growing library. One of the books was about a Crazy Cow - Daddy got told off for making a noise, well who can resist a big yellow button that says 'press the button' - problem was that Daddy didn't know how loud the cow noise would be - it was very loud.

Maisie saw the eye doctor again and it is more good news - there is no sign at all of the ROP. Maisie will still have checks every week for the moment.

The Eye Doctor told Daddy that Maisie was the first baby in the UK to be treated with Lucentis for ROP.

a busy old day

Maisie's new outfit looks like it was designed
for babies with giant feet

Maisie had a lovely afternoon spent with Mummy. Daddy was with Uncle Douglas putting tiles up in the kitchen. 

Uncle Douglas and Aunty Margaret really spoiled Maisie today; Maisie got a new outfit and also a rocking chair, she is a very lucky girl.

The nurses thought that Maisie was getting a little  bored lying in bed and needed to sit in a chair to watch the world go by - when Maisie gets chance to sit in her new, very special chair  Daddy will post a photograph. Thank you so much. 

It started off a lovely Sunday afternoon with Mummy getting lots of "Maisie time." Maisie's oxygen saturation was fine at about 85% with a good heart rate and the supply was 3 litres per hour. There were lots of cuddles and the flow got turned down to 1 litre. 

A new bed for Daddy's big girl

Aunty Eleanor and Uncle Carl came to visit and luckily there were no nurses present to tell Uncle off for tickling Maisie's toes while she was getting cuddles from Mummy. 

Maisie has been doing so well that she got a big girls cot. It was a busy old day, Maisie got weighed (she's put on 15g or 1/2 oz) and then did a bit of breast feeding. 

Maisie has been busy the last few days; eye test, new ventilator, breast feeding, cuddles, sleeping etc. 

Unfortunately all this has tired out My Amazing Maisie and this evening she had two big bradycardias (slow heart rate). This may be linked to her having the sniffles and is also likely to be because Maisie is tired out from breathing on her own. This was quite a scare for Mummy and Daddy and Maisie didn't seem to happy about it either. 

The fantastic medical team had everything under control. They have taken blood samples to see if Maisie could have a viral infection, results will be tomorrow. Maisie's blood gases showed that she had been struggling and her carbon dioxide levels were high. 

The team have put Maisie back on to the CPAP machine (continuous positive airway pressure) to make it easier for Maisie to breathe. They also took Maisie off her feeds and put her back on a drip to take pressure off her diaphragm which again will help Maisie breathe more easily. This means Maisie is back to wearing a hat and covering up her beautiful hair.

While all this was happening Aunty Rhona came to visit Maisie who managed to open her wee eyes  for her special visitor all the way from London. Let's hope Maisie is feeling better tomorrow and ready to listen to some of Aunty Rhona's stories and maybe get to try out her fancy new chair.

Maisie: "Would you be happy if you had to look like an elephant again?"

Since going onto the CPAP Maisie is a lot more settled with no further bradys and her saturation is back to normal (for Maisie).

tired out

Maisie's wee lungs have been working very hard coping with the low-flow and this takes a lot of Maisie's energy. The low-flow is still at 3 litres per hour and Maisie is maintaining her oxygen saturation in the mid 80%'s. It's been a busy couple of days for Maisie and so most of the day was spent sleeping;

catching up on some much needed sleep

more improvement

As the consultants hoped by lowering the pressure of Maisie's oxygen supply she has been learning to breath by herself . Maisie is progressing well and is now on the Low-flow which delivers oxygen but at a greatly reduced pressure. The idea is to keep reducing the pressure to help her breath on her own.


Going on the low-flow did distress Maisie a little but she soon settled down after lots of cuddles from Mummy and Daddy.


Maisie' is managing well since going onto the Low-flow and her oxygen saturation has been improving staying mainly in the low 90%'s - a good change for Maisie.

Do you think Maisie's clothes are just a wee bit to big? 

maisie needed a stern word

The eye doctor visited Maisie today and once more it's good news; there is no growth of blood vessels into the eyes. The eye doctor is scheduled to check again on Monday.

Late on Wednesday night just before Daddy went to bed he picked up the phone and called the hospital as usual to see how Maisie was doing. The lovely Nurse told Daddy that Maisie was wide awake and not interested in going to sleep.
The nurse then handed the phone to Maisie so that Daddy could have a word or two with her. Maisie took a look around while on the phone and couldn't work out how she could hear her Daddy but not see him. Daddy had stern words and explained that he wasn't happy Maisie was still up well past her bedtime.

And I love you too My Amazing Maisie.

Maisie is a good girl (of course) and took heed of Daddy. Maisie slept well and continued to cope with 3 litres of pressure and reduced the percentage of oxygen supply to 85% for a while. Maisie oxygen saturation also went up into the mid 90's.

Maisie put on a little more weight, just 15g and now weighs 2015g - 4lb 8oz. Maisie had a good day sleeping and growing after having her eye test which takes a lot out of her. Maisie's oxygen is back up at 100% but still at 3l and her oxygen saturation hasn't had any major drops.

good progress

contently sleeping with Daddy's thumb for security 

Maisie is doing well. The pressure of Maisie's oxygen supply was reduced to 3 litres/hour which is good progress and will lead on to the Low-flow machine if Maisie continues to cope.



The percentage of oxygen is back up to 100% but it's the reduction in pressure that is important.
Maisie's oxygen saturation has not dropped and is sitting in the high 80%'s which is also good progress as recently it has been in the mid to high 70's.

Mummy and Daddy's saturation would be at least 97% and above but between 90-95% would be great for Maisie.

Mummy has been breast feeding again which Maisie seems to be enjoying. Maisie was emptying Mummy quite well so her feeds were slightly reduced as her tummy was getting very full. You will be happy to know that Mummy is back on track with the supply of milk.

All the milk that Maisie is feeding on is helping her grow. It is this great growth that is helping Maisie progress as well as she is at the moment. Mummy is working very hard to help Maisie.

All the cuddles and breast feeding tired Mummy out so Daddy got some Maisie time while Mummy caught up on a little sleep in the parents room. Mummy is up several times during the night to express milk which is extremely tiring. Daddy is so tired that he sleeps through the noise of the expressing machine.

Maisie felt so relaxed she feel asleep

Daddy and Maisie spent time having cuddles, reading books, reviewing the paper and Maisie even spent a little time sitting up looking out of the window while Daddy tried to help her get rid of the hick-ups. Getting rid of the hick-ups is quite difficult when you're not allowed to scare the wee person that has them.

But the best thing that happened for Daddy was giving Maisie a bath!

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.