Maisie is in Edinburgh

The day started with a call from the surgeon. But there had been no word from the Doctor. He'll call back.

Daddy called the doctors to find out if there was any news. There wasn't and there wouldn't be for a couple of days. Not good.

Daddy spoke to the surgeons office and told them the situation. They'll call back.

Meanwhile Maisie had the good nights sleep she was needing and had slept for nearly 7 hours in a row waking briefly to pull her prongs off her face and then requesting rather loudly that Daddy replaced them in a timely manor. Maisie got her own way of course and Daddy resolved the prong situation quickly.

The surgeon called back. Can Maisie be in Edinburgh for mid afternoon? "Of course" was the reply.

This was Maisie's first visit to Edinburgh and she was really excited. Especially as she was going to the Sick Kids Hospital. It's in Marchmont and Maisie has heard many stories all about another Maisie who was from near Marchmont - MaiseMacKenzie the Morningside Cat.

Maisie has been examined and will meet the anesthetist in the morning who will decide whether or not Maisie will be able to have the operation. If she can then it most likely that it will be tomorrow and then if all goes well Maisie could be discharged on Sunday. Of course this also depends on there still being an intensive care bed available.

If Maisie does have her operation and get to go home on Sunday it will be via Kirkcaldy as Sunday night is scheduled to be her sleep over to have her oxygen levels checked. This will be followed by her synagis injection and a meeting with the dietitian. It's non-stop for Maisie.

Mummy gets to stay over with Maisie at the hospital. Yet another girly night together. Daddy will have to bed down at the flat with Megan.

Mummy read Maisie the bedtime story - "Maisie goes to hospital"

maybe Edinburgh maybe not

It was not a great day for my amazing Maisie.

Maisie continued to be unsettled and not keen on her food. Daddy spoke to the dietitian and then to the health visitor to see if they had an idea what could be wrong with Maisie.

Cheeky! 

The health visitor took a wee sample to test to see if Maisie could have a urinary tract infection. Initial results showed that it is likely that Maisie has an infection.

The doctors requested a larger urine sample which wasn't easy to get so Daddy convinced Mummy to wrap poor Maisie in a freezer bag to collect the wee-wee;

This will help the doctors decide what the best course of treatment is.

Not only was Maisie under the weather due to the possible infection but also due to her hernia which was out for the majority of the afternoon and early evening. This wasn't helped with Maisie being upset as the hernia wouldn't pop back in.

Mummy and Daddy did a really good job ensuring that Maisie got fed little and often so that she could keep her fluid levels up.

Then (would you believe?) the doctor from the Sick Kids called. He asked if we would be available at short notice to go to Edinburgh for an operation on Maisie's hernia tomorrow afternoon. He was putting Maisie on the emergency list and is going to call in the morning to confirm.

All this time waiting for an appointment and Maisie ends up with a potential infection. If the doctors confirm this in the morning and want to treat Maisie she will not be able to go to Edinburgh.

Maisie will not have the strength to fight the infection and have an operation.

What will tomorrow bring? 

maybe tomorrow

It was too cold to go out for a walk. It didn't really matter as Maisie wasn't in the mood for a walk. It wasn't a great day for Maisie who didn't feel like eating either. There has been a good amount of sleep this afternoon which will help Maisie with her growth.

Maisie finds it most comfortable with her bottom up in the air 

The Doctors called about her operation asking how much notice Mummy and Daddy need to leave for Edinburgh. Daddy is all organised and every ones bags are packed to leave straight away. The Doctors were pleased to hear this and said that they are hoping that there will be a free bed tomorrow. We're praying it will be for Maisie.

normal day

Daddy got up and made Mummy her porridge and got Maisie's milk ready. Maisie fed really well this morning and she had slept well.

photo taken
last week at Optos 

Maisie and Daddy took a ride in the car to the local council office to see if Maisie is eligible for a "park anywhere badge."  This could be useful when Daddy is lugging Maisie's oxygen around.

Next it was out for a walk with Meghan - it was a really beautiful day in the East Neuk of Fife, the sun was shining and the views across the Forth were as amazing as Maisie. Then back home for lunch.

Maisie getting her
eyes checked

Maisie was then quite grumpy for a while and although she enjoyed her afternoon playtime with Mummy she managed to moan all the way through. Zach did managed to get a few smiles when he took a turn to console her.

A busy yet quite normal day for Maisie who appeared quite tired by the end of it - she must as last get a good nights sleep.

crabit wee girl

Maisie got weighed;

"this bed is way to hard no wonder I'm grumpy today!" 

Maisie hasn't put on very much weight which was expected with the discomfort that she's been facing lately. There is still no update on when the operation will be. Maisie is now 9lbs 6oz or 3.24kg.

Maisie slept fairly well and also enjoyed her milk but was still a crabit wee girl. Maisie just wouldn't settle - it's tiring with a wee one who isn't settling. Sooner the operations comes along the better.

Megan: "I've almost got them both to sleep, the cake will soon be mine" 

a little respite

Maisie slept better and also fed a little better. Her Hernia was not causing as much trouble as usual.

It's good for every one to have a little respite. We're praying that this week will bring good news regarding Maisie's operation.

Grand Aunty Eleanor and Old Uncle Carl came to visit - they hadn't seen Maisie for a few weeks as they had caught a bug from cousin Alan. They couldn't believe how much she had grown.

We find out how much Maisie has grown this week as she gets weighed tomorrow.

Aunty Eleanor really enjoyed the lemon drizzle
cake that she had made for afternoon tea. 

sleep at last

Maisie, Mummy and Daddy were all meant to be going to Edinburgh to have a birthday dinner with their friend Alan who is 50 today! We can't believe how old he is and that he managed to get that old as disgracefully as he did. Happy Birthday Alan.

So not to disappoint Daddy went on his own and left Mummy and Maisie to have a girlie day - Maisie was definitely in need of a manicure.

Maisie's was very uncomfortable with her hernia and it was putting her off her food. Maisie did eventually sleep well but didn't really feel like feeding over night. However by breakfast time Maisie was back to her  normal greedy ways.

Maisie crashed out and got some sleep at last.

After a really lovely day with Mummy, Maisie was once more able to finally asleep aided by her loving sister (texting)

Loving sisters x 

looking forward to a phone call

Maisie slept fairly well most likely due to exhaustion. The same cannot be said for today. Maisie's hernia has been playing havoc and Maisie didn't manage to settle at all until early evening.

At lunch time  Daddy, Megan and Maisie went for a quick walk to the post office. Then Maisie settled. Other than that it was a day of many cuddles and lots of comforting for Maisie.

looking well

A visit to Optos to get Maisie's eyes checked was the main chore of the day.

It was good news - the pictures show that Maisie's eyes are looking well. The blood vessels are growing out around the retina and giving a much better peripheral vision than if she'd had the lazer treatment. It looks like Maisie will need no further treatment!

It's very exciting how well Maisie's eyes are reacting to the treatment she was given. There was a photographer there to take pictures of what was happening for the Health Service - when we receive copies we will post some well chosen ones.

We can't let you see the pictures of Maisie's eyes as they are the first pictures of ROP and they will need to be presented in a paper written by the Doctor before we can release them to the public eye!

The Eye Doctor is extremely pleased with the outcome of the treatment. This will hopefully make a big difference to how Retinopathy of Prematurity (ROP) is treated going forward. They will continue to monitor Maisie's eyes every fortnight to watch the progress.

Maisie in her own wee way is creating history!

growing

The Doctor called about Maisie's hernia, there are still no beds but he will ring us as soon as any become available. They hope that it will be within the next two weeks.

Maisie met with the dietitian today and had all her measurements taken, she has grown in height slightly and her head has got bigger. Maisie is not growing as quickly as required possibly due to the stress of the hernia but it's good that there is growth. The dietitian will see Maisie again in about 2 weeks.

Daddy and Maisie popped into the SCBU ward to let them know Maisie will be in for eye drops tomorrow before her trip to Dunfermline. One of the nurses took Maisie off for a wee tour to see all the other Nurses that had looked after her. Maisie seemed to enjoy her trip back to the ward.

Daddy then took Maisie for a walk in the park with Megan, all was well until Maisie realized that she wasn't able to feed the ducks as Megan had decided to go for a swim;

"but Daddy I wanted to feed the ducks!" 

no beds

Daddy spoke with the Sick Kids Hospital - there are no spare beds for Maisie at the moment. Not the best news. Maisie's hernia kept both Mummy and Daddy awake last night. It's okay though as Maisie got a few hours this morning;

Don't worry Maisie's not got chicken pox
 (that's currently doing the rounds in the east neuk)
it's just a nice and new spotted top! 

We'll just have to wait - as soon as bed comes free hopefully Maisie will be able to have it.

Today Mummy got some massage training to help Maisie's digestion and Maisie got weighed today putting on a wee bit more; 9lb 2oz / 4.16kgs.

Tomorrow Daddy and Maisie are off back to the hospital in Kirkcaldy to see the dietitian, hopefully Maisie is getting back on the track for good growth.

no phone call

So Maisie and Daddy waited in all day so that they wouldn't miss the all important phone call. It didn't come. Daddy will try and find out tomorrow what is happening.

Maisie had another day of growing, or sleeping depending how you look at it. It was yet another morning missed by Maisie waking only a couple of times to ask Daddy to take her oxygen prongs out of her mouth and put them back into her nose before finally waking up for lunch.

This afternoon Maisie had a couple of visitors who had been desperate to see Maisie but unfortunately were carrying germs for the last few weeks.

Firstly Tanya came around for lunch (she really enjoyed Daddy's soup) and finally got to give Maisie some cuddles and a feed. Tanya will be looking after Maisie when Daddy eventually decides to get a job!

Maisie is already being cheeky to her future nanny
sticking her tongue out when Tanya wasn't looking ! 

Then Margaret popped around with another beautiful cardigan - Thank very much! It was a day of presents as Tanya brought gifts and Maisie was also given a camel all the way from Abu Dhabi from Lucy. It looks just like Amazing Maisie the Camel from Maisie storybook.

Tomorrow there will hopefully be some news regarding Maisie's operation.

phone call

Maisie must have had a lot of fun with the babysitters who did a great job however Maisie was on a high by the end of the evening and did not sleep very well.

"telling babysitters what to do is fun!" 

It has been another unsettled day for Maisie with more hernia issues. When the hernia is not bothering Maisie she is on good form and enjoying all that is going on around her.

Maisie didn't sleep very often during the day so Mummy and Daddy are hoping she sleeps well tonight and gets a good nights rest for the start of what will be a busy week especially if the operation gets scheduled.

Hopefully Monday's phone call regarding the the hernia will be good news and there will be a visit to the Sick Kids Hospital in Edinburgh

Maisie is seeing the Community Nurse on Monday, the Massage/Reflexology Nurse on Tuesday, the Dietitian at Kirkcaldy on Wednesday and a trip to Dunfermline on Thursday..........................only if there's not trip to Edinburgh!

baby sitters

Maisie once more gave Mummy trouble during the night and in the early hours kept Daddy awake before being fed after which she slept until just after lunchtime, the difference being Mummy also after an hour or so of work got some much needed sleep along side Maisie.

The hernia popped out a few times but managed to pop back in before the baby sitters took over their duties.

Maisie with her Governess (her loving big sister) 

Thank you very much to Zach, Meghan and Lucy for their help this evening and letting Mummy and Daddy get out for a wee while for dinner with friends.

Whilst out for dinner one of the party mentioned that they hadn't seen a picture of themselves on the blog, this person has been there since the day Maisie was born and frequently visited at the hospital. Brian will always be part of Maisie's life and of course should have his picture on Maisie's blog!

Brian  eventually getting a hug from Maisie (a few weeks ago) 

World Prematurity Day

Maisie kept Mummy up most of the night and it seemed grossly unfair that when Daddy took over and after a feed Maisie then slept for nearly 6 hours! Lucky Daddy.

Daddy took Mummy and Maisie out for a run in the car this afternoon and stopped off for a coffee. Maisie hasn't had any caffeine since leaving hospital and had coped well without it so far so decided to just have milk instead. 

Then it was back home and more hernia discomfort. Monday can't come quickly enough. 

Maisie eventually settled down for a wee snooze on her play mat before going to bed;

Tomorrow evening Mummy and Daddy are bravely leaving the children home alone while they are out for dinner with some dear friends; Zach and Meghan will be left holding the baby but we have a feeling that Maisie will be firmly in charge telling Zach and Meghan exactly what to do.

Saturday 17 November 2012 is World Prematurity Day and this year Bliss is getting behind the international campaign to raise awareness of the 15 million babies who are born too soon each year. 60,000 of these are born in the UK and Bliss want everyone to join the campaign to raise awareness of the issues these babies and their families face

In 2008 the idea came about to raise awareness of the serious issues that these babies and their families face and since then the day has gained more and more support and each year has gone from strength to strength.

you can find out more at; http://www.bliss.org.uk/media-centre/world-prematurity-day-2012/

and watch a video at; http://www.youtube.com/watch?feature=player_embedded&v=LJtC-wkr6t0

Please take time on Saturday to think and pray about all the premature babies and their families around the world. 

lovely

Maisie is finding her voice which is lovely to hear. Daddy can't believe Maisie is nearly 6 months old and already answering back! It is really lovely to hear at last although Mummy and Daddy were secretly enjoying the fact that Maisie wasn't able to cry very loudly.

Maisie was up very early this morning and decided to entertain herself, not by crying but by practicing to talk. She did this for about an hour and a half.

Mummy slept through this as she'd gone into a deep sleep because Daddy had taken over Maisie's care by this time. Daddy thought this was lovely but Maisie could have picked a better time to practice.

Maisie tired herself out with all the chit chat and slept right through until lunchtime. Hopefully she's having another growth spurt.

Today Maisie should have been having her operation. This would have been preferable to the afternoon that Maisie did have - her hernia reared it's ugly head and caused poor Maisie a lot of discomfort.

We're all looking forward to getting the phone call on Monday to let us know when her hernia will be fixed.

postponed

The Sick Kids hospital called Daddy just as he packing up the car for the adventure to Edinburgh.

Bad News - the operation is postponed and the hospital will call again on Monday with an update.

Unfortunately there are a lot of children with a virus which is causing problems for the hospital - this would put Maisie at risk. They explored all the possibilities and could not come up with a risk free solution.

Other than the disappointment that there was no trip to Edinburgh, Maisie had a good day with lots of play and smiles!

getting ready

Maisie spent the day getting ready for going to Edinburgh, or maybe she was just having a growth spurt. Maisie spent the majority of the day eating. A lot of milk was drunk! Maisie must have heard that she'll not be getting any food before her operation.

Maisie prefers to hide rather than seek......

Other than feed, Maisie chilled out in her chair for a hour or so and had some play time with Daddy. Maisie went to the post office to buy some stamps for Mummy and then learnt how to make Mince and Tatties for tea.  Quite a busy day especially for Daddy as Maisie was determined not to take a nap.

ops on

Daddy got the phone call from the surgeons secretary; Maisie's operation for her hernia will be on Thursday!

Maisie needs to be at the Sick Kids Hospital in Edinburgh on Wednesday afternoon to get ready for her operation which will be at some time on Thursday. It is most likely that Maisie will stay in hospital on Thursday night and will hopefully get home on Friday if all goes well.

Mummy can stay over at the hospital to make sure Maisie doesn't get homesick.

Maisie was weighed today and is now 8lbs 15oz or 4.05kgs. It's great news that Maisie is putting weight on again!

mummys day

Daddy went to Edinburgh with some friends to watch Scotland play the All Blacks, Meghan was also there with some friends and Zach had an important race over near Glasgow so it was Mummy's day with Maisie.

Unfortunately Maisie was not on good form and gave Mummy a hard time - it was not a fun day (and Scotland lost).

Mummy and Daddy are looking forward to getting a phone call tomorrow to find out about Maisie's operation.

Tomorrow Maisie gets weighed - let's hope she's put on some weight this week.

early night

Maisie did a really good job of being awake for most of the night, Mummy and Daddy were not entirely sure what was wrong but it mainly seemed to be her hernia. Roll on next week.

Mummy was the unlucky one who was on duty during the night and really didn't get very much sleep. Daddy did wake up in sympathy but managed to get more sleep than Mummy.

Maisie then decided to wake up early (05.45am)  and as Daddy got slightly more sleep he took Maisie through to the living room to let Mummy get a bit longer in bed as she was working during the morning. 

Maisie still couldn't really settle - poor Maisie.

Aunty Manu looking comfortable holding Maisie (?) 

Aunty Manu came to visit for cuddles and some dinner. Maisie was starting to get a bit grumpy and Aunty Manu did her best to settle Maisie. She brought with her a lovely wooden Pinocchio that Alison and Matthew had sent over from Italy. Thank you.

Mummy really liked Pinocchio however Daddy and Aunty Manu thought that it was a little scary;

Add caption

Maisie's hernia was out again at bathtime and at bedtime. Maisie is so tired she will hopefully fall asleep and not feel the discomfort. It was an early night for Mummy and Daddy who are trying to catch up on their sleep.

at last

Another good day for Maisie. The physio is happy with Maisie's form and  her progress looking towards her left side. Maisie is getting great stimulation which is helping with her Neurodevelopment - she will get another visit next month to ensure her development stays on track.

Then it was a visit to the hospital to see the surgeon about Maisie's hernia. At last the news Mummy and Daddy wanted to hear; Maisie will get an operation to fix her hernia. There is no fixed date for the operation, all we know is that it will be next week as they need to perform the operation as soon as possible.

It will involve a trip to the Sick Kids Hospital in Edinburgh. The uncertainty of the day is because there needs to be an intensive care bed available due to Maisie's chronic lung disease. This will hopefully just be precautionary and Maisie will not need it however they will not operate without the availability.

This is great news for my Amazing Maisie !

adventure with the eye doctor

Another busy day for Maisie, back to the hospital for eye drops and then on to Optos at Dunfermline for photographs of her eyes.

On the way to get Maisie's beautiful eyes photographed Daddy's car broke down. It just stopped! And only a quarter of a mile from Optos. It was quite an adventure for Maisie (and Megan who was in the boot) breaking down on the edge of the motorway. After Daddy had made a few phone calls Maisie continued her adventure with the eye doctor who was kind enough to come and pick everyone up and take them to safety.

Then Mummy arrived to save us all and make sure that we got home in time for tea.

Maisie got her eyes photographed and it is good to know that they are not getting any worse. Maisie was very well behaved and some great pictures were taken. Maisie doesn't have to go back again for 2 weeks.

If Maisie had not been sick at the hospital 

there would have been a beautiful picture 

of Maisie in a really cute outfit in this space

Maisie is hoping to go shopping very soon as the kind people in Mummy's Thursday morning 10am class had a wee whip-round and very generously got Maisie some Mothercare Vouchers - Thank you very much I think it will mainly be spent on Maisie's ever growing wardrobe. 

Tomorrow is yet another busy day in the life of My Amazing Maisie, a visit from a physiotherapist in the morning and then another trip to the hospital to meet the surgeon who will hopefully arrange to fix Maisie's hernia soon. 

back to her usual self

Maisie slept a little better and also fed better overnight. Maisie is recuperating well and is catching up on her sleep. Maisie got up for breakfast and then went back to bed for a few hours waking up just in time to see the Community Nurse.

Maisie was wide awake and very alert making the Nurse doubt all Daddy's moans about how ill Maisie had been over the last few days.

"What do you mean I shouldn't be up on the settee Daddy?" 

Maisie managed to catch up on the playtime she'd missed over the last few days;

Maisie though that it was much more fun watching the world
passing by while sitting on the settee than playing on her mat! 

It was great to have Maisie back to her usual self.

Tomorrow Maisie is off to Dunfermline for more photos of her eyes.

sleeps over

Maisie didn't have a good night, most likely due to the injections that she suffered yesterday. Maisie grumped her way through the whole night, she just couldn't get settled not even with Daddy's cuddles which usually  work very well comforting Amazing Maisie.

Tuesday was a little better for Maisie, although still a bit listless she is adjusting to her new milk and managed to catch up on some sleep. Daddy really hopes that the sleep continues as after last night he's starting to feel like sleep's over.

sleep over done

Maisie slept well at the hospital but Mummy didn't. Even though the nurses were very quiet on their hourly visit to check Maisie's monitor it still disturbed Mummy. Don't worry though Mummy managed to catch up on a wee bit of sleep during the afternoon.

Maisie's oxygen saturation needed to be over 92% which it was for most of the night. Unfortunately it fell to about 70% while Maisie was feeding.

When Mummy and Daddy met with the consultant it was decided to keep Maisie at the oxygen levels that she is currently on for the moment and it will be reviewed again in 4 weeks time.

Maisie also got her Synagis injection along with her Flu jab. - they made her really grumpy for the rest of the day and Maisie never really settled until mid evening. Hopefully she will be so tired that she will get a good nights sleep.

Maisie also had a meeting with her dietitian while at the hospital. Maisie was weighed and has not put on very much weight this week; only an ounce or so - she is now 8lbs 7.5oz or 3.84kg. To help Maisie gain weight she has been put on a different milk with an even higher calorific content. This is so that Maisie can stay on the same volume of milk but get more energy as she is already struggling with the quantities. Daddy is proud of her though as she's managing about a pint a day. Hopefully this will help her gain more significantly. We'll meet he dietitian again in a couple of weeks.

The nurse who teaches Mummy and Daddy massage therapy visited Maisie at home in the afternoon - there is now going to be more focus on massage that will stimulate digestion and growth.

It was a very busy day.

Sleep over

Maisie is back at the hospital for the night with Mummy. She has been wired up to the machine that measures her oxygen saturation.  

The nurses will take a reading every hour and in the morning Mummy and Daddy will meet with the consultant to find out how Maisie is doing.

It's a busy day for Maisie as well as seeing the consultant there is a meeting with the dietitian. Maisie will also get her synagis injection and possibly her flu jab.

Then when Maisie gets home there is some baby massage to have. 

The nurses were all happy to see Maisie and we're amazed how much she's grown. 

needed cheered up

You'll be please to know that Maisie slept a little better last night. Mummy slept quite well too, in fact Mummy slept right through Maisie's apnea monitor alarm. Don't worry Daddy got up to check that Maisie was breathing - she was!

Mummy did get up later to feed Maisie while Daddy caught up on a little sleep. It was really kind of Mummy to get up during the night instead of Daddy - he deserved a break.

Maisie wasn't her best today and didn't want to play as much as usual, she slept well through the morning but was a little grumpy later in the day. The hernia was slightly out on and off throughout the day giving her discomfort. Also Maisie seemed a wee bit wheezy - hopefully this will not lead to anything and she is just having an off day. Maisie will have her chest checked at the hospital tomorrow evening.

Maisie needed cheered up and when Grand Uncle Douglas and Grand Aunty Margaret popped around for a visit that seemed to do just the job. Uncle and Aunty helped feed Maisie while Mummy prepared a lovely dinner with help from Meghan (it sounds like Daddy really was getting a good rest!).

Old Uncle cheered up Maisie! 

Tomorrow Maisie will have a sleep over at the hospital with Mummy. Maisie will be monitored hourly to see what her oxygen saturation is like and her oxygen supply adjusted accordingly. Hopefully it will be turned down helping to wean Maisie off her oxygen.

a long night......and day

Well Daddy didn't get his wish, Maisie was restless most of the night as Maisie's hernia continually popped in and out all night. Poor wee Maisie.

And it continued for most of the day, Daddy was really please to see Mummy at 3pm this afternoon to give him a wee break.

Maisie wasn't feeling up for a walk today which was a shame as she got a new hat in the post from Grandma Jan (at the request of Mummy so Maisie would match Daddy) - Thank you.

no it's not hair it's Maisie's new hat!

Mummy is taking a turn to look after Maisie tonight to give Daddy a rest. 

Daddy helping Mummy getting Maisie
settled before bedtime

Maisie had a long night....and day so will hopefully have a better sleep tonight. 

just another day

It was just another day for Maisie, a big breakfast followed by playtime on her mat.

More food and a long walk with Daddy and Megan - it was a lovely sunny day with a crisp wind.

More playing and some lunch when they got home and then Maisie spent sometime having fun with Freddy the butterfly while relaxing in her chair listening to music.

"one day I'll be as big as you Freddy"

Then it was over to Mummy for the afternoon - more feeding and a lot of sleeping before a bath and bedtime.

Daddy is really hoping that Maisie sleeps a little more quietly tonight as she kept him awake most of last night with all her noises and only wanted fed once.