out to play

Maisie didn't attempt the Car Seat Challenge as it was a lovely Sunday afternoon and she preferred to go out for a walk. Maisie spent time with Mummy, Daddy and Meghan playing before meeting up with Aunty Eleanor and Uncle Carl for a coffee. Maisie didn't want a coffee so had cuddles instead.

Aunty Eleanor and Uncle Carl gave Maisie a new mattress for her cradle and some really lovely sheets and towels, she's a lucky girl.

Maisie is still eating and weighs 7lb 1 oz - 3.2kg.

"Meghan can you help Mummy dress me - I want to go out to play?"

In preparation for Maisie coming home, Daddy was shown by the nurses how to measure out Maisie's medicines - they scored him 10/10, clever Daddy!

Mummy is staying over with Maisie on Monday night to see how Maisie will cope with just breastfeeding - and to see how Mummy will cope with Maisie without the help of the nurses. Mummy is very brave staying with Maisie on her own without Daddy. The nurses recommended that Mummy and Daddy should stay over with Maisie separately to see how they cope. Daddy will stay over next Sunday and hopefully the next morning take Maisie home.

car seat challenge

Maisie is 6lbs 15.5oz, could she be any closer to 7lbs? In new money it's 3165g. The new high energy drinks are hopefully starting to work.

Mummy and the nurses made Daddy's day today with a couple of comments that they made about our Amazing Maisie;

Mummy;  "Maisie is looking really ginger today!"

Nurse: "Maisie looks more auburn today"

Daddy's girl still seems to have the potential to be Ginger!

"I just have to sit here for a
wee while and then I can go home - no problem!"

Maisie had her "Car Seat Challenge."

Maisie was put back on the monitor to measure her oxygen saturation, had to sit in her chair for 1 and a half hours and be monitored every 15 mins.

Maisie needed to maintain her oxygen saturation over 92% which was difficult for Maisie to do just a week or so ago.

This is to ensure that Maisie's neck is strong enough to hold her windpipe open while in her seat. Maisie has to manage this challenge to get home as the only way home is in her car seat.

Maisie found her car seat very comfortable and seemed to enjoy the experience. Maisie is used to sitting in her chair so this challenge should be a doddle.

Unfortunately just 10 minutes into the challenge Maisie decided that eating was much more important than passing her test to get home even though she had been fed just 45 minutes before the start of the challenge.

Challenge aborted!

Good thing is Maisie can re-sit this test as many times as she'd like.

oxygen has arrived

A man arrived at Mummy and Daddy's house with an oxygen concentrator machine with a long tube that Maisie will be attached to so that she can travel around the whole house when she gets home. The man also provided  a back up oxygen cylinder in case the machine breaks down and smaller cylinders so that Maisie can go for walks with Daddy and Megan.

Daddy got all the training required and is sure that Mummy, Zach and Meghan are looking forward to the training session that he's arranging for them.

Maisie's dietitian visited and gave Maisie an eating regime - the dietitian is coming back to see Mummy and Daddy as they weren't there for the meeting and don't yet know what was agreed best for Maisie.

Zonked out after a good feed

While Maisie was breast feeding a specialist came to visit to investigate Maisie's hernia, he said he'd pop back to see her in the evening. He was a little earlier that Mummy and Daddy thought (is 5pm evening or late afternoon?) so he too will need to revisit as when he came back Maisie, Mummy and Daddy were all in the WRVS cafe having coffee and shortbread (probably not on Maisie's agreed diet).

Maisie loving her handmedowns! 

A wee girl popped to the Special Care Baby Unit today who had just turned 1 year old. She was also born at 25 weeks old and was visiting the nurses as she had just been taken off her oxygen - lucky girl. While visiting she left a carry bag for the portable cylinders which was given to Maisie, Thank you.

Mummy and Daddy are all booked in to stay over at the hospital next weekend, Daddy will stay over on Saturday night and Mummy on Sunday. If all goes well Maisie will come home on Monday 8th October!

We need all your prayers.

There was no time for the car seat challenge today so Maisie will hopefully sit the test on Saturday.

checking out some sounds

Maisie saw the dreaded eye doctor who told Mummy and Daddy that the blood vessels in her eyes didn't look as "angry" as they were last week. It is still not clear which way the blood vessels will grow so the eye doctor will keep a close eye on Maisie's eyes and will visit again next week.

Now that Maisie is on the new high energy milk she has been referred to a Dietitian for a review to make sure that Maisie is getting the correct diet for the optimum growth. More on this once they have met.

DJ Maisie checking out some sounds

Maisie had her hearing test which went well, hearing is good in both ears! 

"Daddy, I hear all  the nurses say I recognise your voice so
why do I need to go through all this if they already know I can hear?"

Tomorrow is hopefully the "Car Seat Challenge."

needs more calories

Mummy and Daddy met with the consultant. Maisie is not putting on weight as quickly as they would like and feel that Maisie should be increasing her calorific intake to stimulate more growth. Maisie's growth is vital for her brain development.

"look at my pretty dress"

It has been decided that Maisie will continue with Mummy's milk (Mummy is doing really well a supplying Maisie) however the milk supplement the Maisie gets when she has drunk Mummy dry is going to be changed to a high energy milk. Hopefully Maisie will like this milk and start putting on even more weight.

Maisie is now 6lbs 14oz - 3120g

Maisie's hernia has not popped out again and is causing Maisie no discomfort. It has been decided to take no immediate action and the consultant would like Maisie to be bigger and stronger if she is to have an operation.

If is does start popping out and causing a discomfort to Maisie then an operation will be arranged sooner.

Tomorrow Maisie will see the eye doctor to find out how her eyes are and will hopefully have a hearing test too.

Mummy reading a story all about Nessie and Loch Ness
("thanks for the book  Aunty Cat") 

Maisie being Maisie

It was Mummy's birthday and Maisie gave Mummy a beautiful, very soft and cuddly dressing gown. Maisie can't wait to get home to get some Amazing cuddles from Mummy.

Quite often when Mummy or Daddy call the nurses to see how Maisie is doing the answer is; "Maisie's being Maisie".

Today Maisie was being Maisie - just as we thought that she was progressing and well on the way home she throws a wee curve ball.

Maisie was being very grumpy, she didn't want any feed, Daddy's cuddles didn't cheer her up (very unusual) and Maisie's nappy was clean. What could be wrong with Maisie?

While changing Maisie's nappy we found a lump in her groin area.The doctor came to see Maisie but by that time it had disappeared. It is quite likely that it is a hernia which is common in young children as their muscles are not very developed. This could have been because Maisie had a lot wind (although Daddy was getting the blame) and was straining alot.

It is good that the hernia popped back in as it took away Maisie's discomfort. The consultants will check Maisie to confirm if it was a hernia or not and a specialist will probably see her on Friday.

If it is a hernia she will need a short operation to ensure that it doesn't pop out again. If this is required it shouldn't delay getting home to much. Maisie will just have a wee detour to Edinburgh on her way home.

Poor Maisie.

closer to home

Maisie's nurses have stopped adding fortifier to mummy's milk to help her grow, she seems to be growing just fine on her own. When Maisie gets home Mummy and Daddy will not be able to add the fortifier. Maisie needs to get used to this change.

Maisie's "top-up" feed has also been changed to the one Maisie will get if she needs any at home. All good preparation for getting home.

Today the Consultant ordered the oxygen concentrator that needs to be installed in the house so that Maisie can have oxygen when she gets home. Daddy is expecting a call later in the week to confirm a date for the installation - it should be in place by early next week.

Maisie's need to have oxygen at home as her lungs still do not work well on their own because of the Chronic Lung Disease. Maisie will have a concentrator in the house with a oxygen cylinder for emergency. To get out and about Mummy and Daddy will have to carry a portable oxygen cylinder.

very pretty in pink. 

a long walk

Maisie escaped from the ward for over and hour and a half today. Grand Aunty Eleanor and Old Uncle Carl came visiting and enjoyed a stroll out with Maisie. Uncle Carl was upset as Mummy wouldn't trust him to push Maisie's pram.

Other than getting out of the ward Maisie didn't really do anything else than feed! Maisie seems to be constantly eating just now as she is working hard to keep her oxygen level stable and uses a lot of energy in the process. Maisie continues to grow and is 6lbs 11oz - 3030g.

Maisie had just one de-saturation since setting her oxygen levels that needed support from the Nurses to help her recover other then this wee blip Maisie is doing well at 0.2 litres. Mummy and Daddy need to be prepared for Maisie coming home very soon;

Tomorrow the consultant is going to get in touch with the oxygen supply company and hopefully by Friday they will have been in touch with Daddy to arrange installation in the house.

if you think that Maisie has a lot of toys in her
bed you should see her bedroom

a huge step

The consultant popped in to visit Maisie and decided to "set" Maisie's oxygen supply level. This is a huge step towards getting home. Maisie needs to manage to cope with this setting for 7-10 days.

Maisie's level has been set at 0.2 litres and is to be turned up to 0.3 litres during feeding as Maisie still has a tendency to have de-saturation when she starts to suck. Maisie manages to pick her self up the majority of the time this happens but sometimes needs help recovering.

As well as Maisie's oxygen level being set the consultant took away Maisie's monitor. The monitor measured Maisie's heart rate and oxygen saturation. It is now down to observation to recognize how well Maisie is doing by looking at her colour.  Maisie still has her apnea montior attached to check her breathing which she will most likely go home with to help Mummy and Daddy settle during the night.

Mummy and Daddy took Maisie out for a walk which was a little strange without the monitor. The weather was a little cooler than the last few days and Mummy couldn't find Maisie's gloves so Daddy improvised;

"Mummy can't you stop Daddy doing things like this?
My socks belong on my feet!" 

a long day........

.......for Daddy.

Daddy was down in England at Great Grandma's funeral, it was a sad day. Then Daddy got cheered up when he visited Maisie's cousins, Charlie and Grace.

Daddy didn't arrive to see Maisie until very late after he had driven for 5 hours back up the road. As to be expected Maisie spent most of the time during Daddy's visit asleep only really waking to have her immunization vaccinations. It was good that Daddy was there as Maisie didn't like this and needed a big cuddle.

Mummy spent a lovely day with Maisie and the two of them went out on their own for a walk. Daddy thinks that Mummy was really brave to do this.

Maisie's oxygen supply is mainly at 0.2l and her oxygen saturation is staying in the high 90%'s most of the time.

big dirty nappies

Maisie met with the eye doctor - there is no major change. The examination shows that the blood vessels are not yet growing into the outer part of the retina. They could be getting restricted by a small ridge from the ROP that Maisie previously had.

The Anti VGAF seems to have just arrested the process and the ROP may be back - stage 1. Fortunately there is no plus disease to be seen.

This is not to much of a problem as Maisie is big and strong and would be fit enough to have an operation for the lazer treatment if it is needed. The eye doctor cannot predict which way the vessels will grow - it is possible that Maisie could grow out of the ROP as she is much more mature now.

"really Daddy, this is fun?  I'd rather have a cuddle!"

Maisie's oxygen is mainly at 0.3% and is turned up to 0.5% for feeds to try to stop the de-saturations. Maisie has also dirtied a few nappies which is good news.

Daddy left early today as he has gone south for Great Grandma's funeral so Maisie got lots of Mummy time!

4 months old

Maisie is 123 days old (if she had been born on her due date Maisie would be 22 days old).

Maisie loves food so much she will feed herself

Maisie is feeding well and continuing to grow. Maisie is also sleeping well, and slept for a full 5 hours in a row last night. Mummy and Daddy are hoping that this continues when Maisie gets home.

Maisie's oxygen level has continued at 0.3 litres.

When Maisie gets home she will come back to the hospital once a month to the Synagis Clinic. Synagis is a medicine that helps protect children from developing serious chest infection from RSV (Respiratory Syncytial  Virus)
This virus can cause a severe lung infection during Autumn/Winter/Spring. If Maisie were to get an infection then she would most likely require a visit back to hospital.

Bye bye Nurses, Mummy and Daddy
are taking me out for a walk

RSV is a common infection in children and usually they just have a runny nose. Unfortunately children who are born early or have lung problems usually get so ill that the require a hospital visit.

Maisie got her first inoculation of Synagis today - another step towards going home! It is important once Maisie is home that additional precautions are taking to prevent her being infected; wash hands regularly, keeping people with colds away, cleaning and disinfecting toys etc. and keeping Maisie away from Nurseries or Creches where other children may be infected.

Maisie is determined not to catch RSV 

Maisie is at risk from developing severe bronchiolitis as she was born prematurely and has a less mature immune system than other children.

Mummy and Daddy took Maisie out for a walk again as it was yet another good day. This time Maisie was awake for most of the walk.

Maisie was awake all afternoon playing and listening to stories, she was in her chair listening to music, trying out her car seat (Maisie is still to complete the car seat challenge) and getting lots of cuddles. Her busy day tired her out and Mummy and Daddy left Maisie sleeping.

all tired out..........

what a lovely day

It was not just the warm and sunny September weather that made today lovely;

Maisie is now 3kg (6lb 10oz) -  the nurses are amazed how much milk Maisie is drinking.
Maisie's oxygen supply is back down to 0.3 litres although Maisie is still having de-saturations especially when feeding but Maisie is managing to bring herself back from them quicker. 
Maisie also got some medication to help her bowels move and messily filled her first nappy for 6 days.

After another restful night Maisie had a busy day;

Maisie went out for a breath of fresh air and met a very important member of our family;

Megan: "It's okay Dad, you go for coffee with
Mummy, I'll keep Maisie safe."

After taking Megan for a long walk Maisie decided that she'd like a soak in a hot bath which she really enjoyed and had a splash around playing with Mummy.

Maisie was interacting well with Mummy and Daddy, responding to their voices and making definite looks towards the direction of voices and noises.  Maisie was very alert and awake playing with Mummy and Daddy, she seemed to be having great fun and appeared to be laughing. It won't be long before we see really big smiles from Maisie.

"Oh no, Daddy's caught me with the dummy again"

Amazing Maisie truly was a Little Star today! 

escaped again

Maisie's oxygen is mainly between 0.3 and 0.5 litres but does rise up to 0.75l when feeding or being changed. Maisie continues to have de-saturation especially when initially feeding.

It's is still not understood why this is happening. Another thought is that she is struggling to co-ordinate all the different things that she has to do while feeding; she needs to remember to breath, she needs to remember to suck and she also needs to swallow her feed.

Maisie also needs to fill her nappy - there has not been a proper full nappy of the type that turns Mummy green since Wednesday. Only small deposits are being made. This could also be part of Maisie's discomfort.

Mummy and Daddy had a lovely afternoon with Maisie who was very alert and playful which is a great improvement from the last through days.

Maisie managed to escape from the ward today with Daddy's help. This time she left in the comfort of her own pram. Getting out of the ward seems to do Maisie the world of good. Daddy and Mummy certainly love  the change in routine.

Escape is good - oxygen saturation of 95% is excellent

trying something else

Maisie is still having oxygen de-saturations. Maisie's oxygen supply has increased to 0.5 litres and was up at 0.75 litres for a while.

The medicine that Maisie is taking for reflux does not seem to be making a difference. It may not be reflux that is causing Maisie discomfort.

The team at the hospital are trying to work out what could be upsetting Maisie. We need to try something else. The latest thoughts are that Maisie may have more fluid on her lungs than usual. This is because the consultants have been trying to wean Maisie off her diuretics to help her get home. Diuretics reduce Maisie's fluid retention.

The dose of diuretics for Maisie has been increased and already her nappies are heavier. Hopefully this will help stop Maisie's de-saturations and allow the consultants to fix Maisie's oxygen supply for going home.

Apart from the de-saturations Maisie seems well and is continuing to grow; now at 6lb 8oz - 2.925kg.

Maisie spent an afternoon playing and feeding with Mummy and Daddy. Maisie seemed very happy today.

It was also a sad day as Maisie's Great Grandma went to heaven this morning. Great Grandma was 95 and had not been very well but knew all about Maisie as Grandpa read her the blog every day.

We'll all miss you Great Grandma X.

the frog blog

Maisie had a very settled night and seemed well rested this afternoon. Maisie is still having some oxygen de-sats however she is rectifying most of them on her own. Maisie's oxygen supply is ranging between 0.2 litres and 0.3 litres which is a little higher than the consultants would like.

It will take a wee while for the medication to work if it is reflux that is causing Maisie her problems at the moment. Hopefully over the next few days we will start to see a change.

Maisie has put on more weight which is not surprising with all Mummy's milk she has been guzzling. Maisie is 6lbs 6.5oz - 2.875kg.

The little froggie with her protector - the "Frogfather" 

exit is closer

Maisie in another pretty outfit

In Maisie's ward the furthest away from the entrance/exit is the Intensive Care Unit where Maisie started her days.

The next room that is not quite as far away from the exit is the High Dependency Unit where Maisie has been for quite a few weeks. The better Maisie gets the closer to the door she gets.

Today Maisie moved to the next room - Teddy Bears Corner! She's getting closer!

Maisie was excited about moving room and all this excitement must have lead to Maisie being a little tired.

Maisie is looking a bit peely-wally and her haemoglobin level is a little low so the nurses are keeping an eye on her to see if she will need another transfusion. Let's hope not. 

On top of this Maisie has given Mummy and Daddy another scare with an oxygen de-sat and a bradycardia. Not good. Just when Mummy and Daddy need Maisie to behave so that the consultant can set her oxygen for coming home Maisie decides to have a funny turn (although it's not really that fun). 

Maisie had bloods taken to check for infection. The usual applies, initial results will be in the morning and any cultures that may grow will be known about in 48hrs. Maisie's appearance once more does not suggest that she has an infection.

Maisie safe in Daddy's arms

It may be that Maisie has Reflux. Reflux is fairly common in premature babies. Reflux is when Maisie's milk decides that it doesn't want to stay in her stomach and decides to travel back up towards her mouth. This is very acidic and uncomfortable for Maisie which could be causing her de-sats. This happen when the muscle at the top of the stomach is weak and not closing properly. It could cause complications for Maisie if it gets worse. 

It is treated by giving Maisie "Dom Perignon" which seems a little extravagant but is suited to Maisie's expensive taste...........opps, wait a minute,  Daddy got that a little bit wrong; Maisie is being treated with domperidone. This doesn't sound quite as nice. Let's hope that this will help Maisie.

Mummy supervising Daddy

a good nights sleep

Maisie was lazy again lying about in her chair listening to music and sleeping a lot. Maisie can be forgiven for this as it helps her grow and because the eye doctor came to visit which takes a lot out of her.

having a lovely sleep

The eye doctors report was good, it looks like the blood vessels in Maisie's eyes are starting to grow in the right direction - good news. He'll be back again next week.

Maisie had more lovely visitors who brought Maisie a wee musical teddy and a lovely frock. Pat and Isobel, thank you.

The consultant spoke with Daddy and Mummy and said that he would like Maisie's oxygen to reduce a little more before he sets the level. Maisie also needs to stop having oxygen de-saturations, she must have been tired today as Maisie's oxygen saturation dropped a few times.

Let's hope Maisie gets a good nights sleep so that she can progress along her amazing journey. 

not so exciting

Maisie slept all day!

and Maisie slept all evening!

Maisie is concentrating on getting out of the hospital after her taste of freedom so feeding and sleeping and filling her nappy (Mummy nearly passed out with the smell) was all that was on Maisie's agenda today.

Maisie is continuing to grow and has put on 50g and weighs 6lb 4oz - 2.84kg.

Maisie thought about waking up but not for long. 

Maisie's big day out

Maisie was looking  very beautiful when Daddy arrived to see her, the wonderful nurses had dressed her in one of Aunty Rhona's fancy outfits;

Maisie dreaming of being a superhero

Who can remember this picture of the stripey trousers Aunty Rhona gave Maisie?

they were as big as Maisie

Maisie's consultant would like Maisie to manage at a set level of oxygen for about 10 days. If Maisie can stop her oxygen de-saturations this may be possible. Then Maisie will have to manage without a monitor.

If Maisie can do all this then we can start arranging for her to go home - to make all the necessary arrangements will probably take another 10-12 days.

Sooooooo..................it is possible that Maisie could be home at the beginning of October. Let's pray that things go to plan between now and then.

Today Amazing Maisie took another big step along the challenging journey home;

look what Mummy found in the
 store cupboard at the hospital! 

Maisie escaped from her ward for the first time since her wee holiday to Glasgow, it was a very beautiful day to get out, enjoy the sunshine and take in some fresh air. It was a little breezy in the wind though so Maisie put on a rather stylish beanie hat;

Maisie enjoying the sun. 

A very excited Mummy and Daddy enjoyed the experience a lot more than Maisie who didn't seem that interested in escaping from her ward and happily slept through the whole adventure.

This turned out well for Mummy and Daddy who decided to take a break and have a coffee and cake;

this Costa opened the same day Maisie was born! 

Mummy and Daddy are looking forward to more trips out around the hospital with Maisie. Hopefully Maisie will appreciate the next day out as much as Mummy and Daddy did today!

more presents

Today was Maisie's cousins birthday. Charlie was 7 years old. Maisie got a text this morning to tell her that Charlie loved the lego that she had sent. Maisie was pleased because she'd sent Daddy out to buy the present as she's not allowed out of the hospital and wasn't sure that he'd get the right thing.

"I love Freddy  but it's a little big for me just now Alba"

Maisie got an Amazing Butterfly called Freddy to play with through the post from wee Alba. It's got lots of activities attached to keep Maisie entertained. Thank you very much.

Maisie gets a lot of post sent to Mummy and Daddy's house. Maisie was particularly happy with the card that she got from Grand (old) Uncle Johnstone and Grand Aunty Gloria. It had one of those special bits of paper with writing on that Daddy put in a safe place called the bank.

Daddy explained that before Maisie meets Grand Uncle Johnstone that she would need to learn how to curtsy as he's the Head of the Family (so he tells us). Maisie will have to be on her best behaviour that day.

Maisie's was a little tired today and had a few oxygen desaturations however Maisie managed to rectify most of them by herself. Maisie's oxygen supply is between 0.2 and 0.12 litres.

Maisie is starting to know what she wants and how to get it........

"if I pretend to be asleep by cutting off my oxygen supply
the monitor will make a noise which means Mummy will pick me up!" 

Maisie needs a good nights sleep as tomorrow could be a big day for her. We'll let you know all about it tomorrow. 

lots of visitors and gifts

Maisie's Aunty Melanie and Uncle Vitor visited with Maisie's cousins Jasmine, Christiano and Alejandro. They came bearing gifts, more clothes, a lovely doll and a fantastic handmedown of a Silver Cross Carrycot/Buggy/Child seat - Thank you so much.

My Amazing Maisie being spoiled again!

Uncle Carl and Aunty Eleanor also visited and spoiled Mummy and Daddy with coffee and cake.

Maisie spent most of the afternoon sleeping which was a shame for her visitors. Once they had all left Maisie spent the rest of the day having cuddles and feeds from Mummy while Daddy read Maisie stories.

Maisie continues to be well and as someone commented previously she is "so lovely and round and sturdy" at the moment.

getting ready

Maisie is still growing and weighs 6lbs 2.5oz which is 2.8kgs. Maisie is back to on demand feeding which is getting fed whenever Maisie asks. The nurses tell us that Maisie is loving her food.

Uncle Douglas and Aunty Margaret popped by and delivered a whole sack of handmedowns from their beautiful grand daughter Nicole - Daddy is wondering how he will fit another wardrobe into Maisie's room. Thank you so much (and keep them coming).

Maisie's oxygen is still at 0.2 litres although Maisie is having a few de-saturations when she starts feeding. Maisie needs to learn to swallow and breath at the same time.

"Check me out! I'm ready to go outside with
my jacket knitted by my next door neighbour" 

pretty in pink

Maisie loves her bedtime outfit,  

Maisie is doing well and currently on track for going home within the next few weeks. Maisie is coping on the Low-flow and her oxygen saturation is looking good.

Maisie had a great day with the usual cuddles, relaxing in her chair, bath time, a new bed and feeding.

Maisie is so spoiled with her outfits. Thank you to our local head of Neighbourhood Watch for the bedtime outfit. Mummy thinks that Maisie looks very pretty in pink.

Maisie's wardrobe of clothes is extensive.

All is well! 

getting closer

Maisie is now 6lbs! 2.7kgs.

Maisie is eating well and growing well, 2 out of the 3 major things that Maisie needs to enable her to get home. The third thing needed is for Maisie's lungs to cope with a low oxygen supply.

"oh Mummy I think I've eaten too much"

Maisie's oxygen flow was down to 0.124 litres for most of the day. While Daddy was getting a cuddle from Maisie her oxygen saturation maxed out and her supply needed to be turned down to 0.08 litres for a while. This is Amazing progress.

Today the consultant started to talk about things that Mummy, Daddy and the team at the hospital will need to do before Maisie goes home. Mummy and Daddy are so happy that these discussions have started. We still don't know when Maisie will be coming home but to be talking about it is extremely exciting.

Maisie will need a lot of help to get home; a hearing test, her medications reduced, her oxygen levels agreed, oxygen installed in the house, a fire check, etc.

Maisie will have a few visits out of the ward around the hospital with Mummy and Daddy so that they can get experience out and about with Maisie on oxygen. There will also need to be overnight stays to see how they cope looking after Maisie. There is so much to do!

Maisie will have a Car Seat Challenge to make sure that she is comfortable and able to manage sitting in a car seat for a long period of time. Maisie is looking forward to getting her car seat this weekend when her Aunty Boo comes to visit with her cousins.

Maisie enjoys a story from her big brother

Maisie loves the outfit she is wearing in this picture. It was a present from Alfie, Olivia and Harry. Thank you  X.

a day of highs and lows

Maisie started the day off well; oxygen supply down to 32% at 3 litres of flow. A big improvement on the weekend. Maisie is certainly improving.

"can you see what's different about me?" 

That's right Maisie has pulled out her feed tube again! 

However what can't be seen from the photograph is that Maisie has taken a massive step forward and is back on the Low-Flow for her oxygen supply. Mummy and Daddy couldn't believe Maisie's improvement. My Amazing Maisie is truly Amazing today. 

Mummy is loving the cupcake outfit from Ireland

Maisie had a day of cuddles and sitting in her chair. Maisie loves being in her chair. Daddy played Maisie Scouting for Girls today which she really enjoyed listening.

A lot of prayers are being answered and hopefully Maisie is getting closer to coming home. Maisie has gone from 3 litres on the High-flow to 0.125l on the low flow. The Nurses put Maisie on the low flow at lunchtime and started at a low flow working up to a flow where Maisie was managing comfortably. To be on 0.125 litres is Amazing. 

Putting Maisie on the Low-flow is pushing her and it may tire her out but as Daddy writes this blog Maisie continues to do well on the Low-flow. 

Amazing Maisie taking time to rest after a successful day

a better day

A precious present

Maisie is such a lucky girl her wardrobe is constantly growing. 

A package arrived from Northern Ireland with lovely cardigans (knitted by Janice), beautiful baby grows and the most wonderful picture frame (that we believe was created by Tara). Thank you so much. Maisie loves your kind gifts and will treasure the frame. It will have pride of place in Maisie's room. 

Maisie is back on the path home after her unsettled day on Sunday. There is no sign of infection and her x-ray showed that her lungs are no worse than they were.

Chilling out on Daddy's knees having been fed again

Maisie's oxygen supply is at 38% with a flow of 4 litres and it got as low as 32% for a while when Maisie was getting a cuddle from Daddy. Maisie's saturation was good today averaging 93% (and higher when getting a cuddle from Daddy),


The consultants are happy with Maisie's improvements and have stopped her steroid treatment which is good as Maisie hated getting her nebuliser. They have also reduced her dose of Sodium as it was making her ill having it by mouth. It was easier to administer when Maisie was being tube fed.

"this will not do, I would like a bottle please"  

Maisie had her tube for feeding put back in her nose so that she could get a rest from suck feeds. Maisie's feeds are being alternated between the tube and bottle with breast feeding when Mummy is around. Maisie is meant to be taking 4 hourly feed but is happily asking to be fed every couple of hours. She's so greedy or maybe it is just that she is still hungry from not eating properly on Sunday.

More sleeping after more feeding

Maisie is continuing to grow and is now 5lb 14.5oz - 2.7kgs. Maisie is 4lbs heavier than when she was born.

feeling better

Maisie had a tough night with a lot of de-saturations. Maisie's oxygen supply was 80% at 6 litres. Maisie also required extra oxygen at times during the night.

Maisie had several blood gas checks with results that were as expected for Maisie so the nurses were not sure what was wrong. Maisie was also checked for infection and had a chest x-ray. The results of which aren't available yet.

Maisie's Hi-flow equipment was also changed a couple of times in case there was something wrong with it.

It is not sure what was wrong with Maisie yesterday nor during the night but this morning it was noticed that there was a vent open on the Hi-flow - once this was realised Maisie made a rapid recovery back to 40% oxygen and 4 litres and seems alot happier.

Maisie seems more like herself today and had gone to bed with oxygen down at 35%. Maisie is back on tube feeds for the moment to help her rest and recuperate after the last 24hrs.

Mummy and Daddy feel a little better today now that Maisie is back to her usual self.

lucky maisie

Maisie is drinking lots of milk and gaining weight again; 5lb 12oz - 2.6kg.

"Daddy's not ginger, he's bald!" 

However Maisie is very tired but doesn't seem to be sleepy. Maisie's oxygen saturation has been fluctuating a lot and Maisies oxygen supply has been increased to 80% at a flow of 5 litres. This should help settle her and hopefully Maisie will get some sleep to help her recover. Mummy and Daddy had a stressful day with Maisie's ups and downs.

Grand Uncle Bill, Lynne and Eleanor came to visit Maisie and she was wide awake to greet her visitors. Uncle Bill has been up into his loft and brought down a very special cot. This is the cot that Lynne slept in and has been passed around the family. It must be old because Daddy slept in it when he was a baby.

Grand Aunty Anne (who's watching over Maisie in heaven with Gran) had packed it away very carefully and it is almost as good as new. Uncle Bill put the cot together and it is ready to use when Maisie is ready to go home. Maisie is a very lucky girl.

oldest visitor yet

Maisie had a hard night on the oxygen flow of 3 litres, it was a little bit to much for her. Maisie is back on 4 litres and her oxygen supply is at 48% (it did go up to 60% to help her recover). It is good to push Maisie along to see if she can manage a lower flow. We'll try Maisie again at 3 litres soon.

"Don't worry, I'm really fighting this" 

Maisie had some Mummy time as Daddy was taking Meghan and friends to Edinburgh to celebrate her 16th birthday. Mummy loved having Maisie to herself for a while as Daddy is very good at stealing all the cuddles.

Mummy isn't around is she?

Today Maisie had a wonderful visitor; Alfie, Olivia and Harry's Great Grandma has been following My Amazing Maisie on the blog and came to visit Maisie. Great Grandma couldn't believe how big Maisie is getting. This is the oldest visitor Maisie has met; 91 years old!

Maisie couldn't believe it when Daddy told her that her Great Grandma is even older! Maisie plans to meet her Great Grandma at Christmas and thinks Great Grandma could buy her a pair of red shiny shoes although Daddy thinks that they may clash with her hair :)