spot the difference.....

So who can see what is different about Maisie; 

Maisie had a wonderful afternoon having cuddles from Mummy and listening to lovely stories. It was all very relaxing.

Maisie also had an ECG scan which looks good. 

Tomorrow the heart doctor will be coming to see Maisie and look at the ECG to check how the Sildenafil (viagra) is working. Lets hope it's doing it's job. 

Maisie is still on 100% oxygen however her saturations have not really fluctuated which is good news. 

It was also confirmed that Maisie will have the eye procedure on Thursday afternoon - even better news! 

Maisie was a little naughty today; she filled several nappies in quick succession and in the process filled her bed, then after Mummy and Daddy helped clean Maisie up and change her bed Maisie was sick all over her bed and down her lovely new clothes - the wee bizzum. 

So what was different about My Amazing Maisie? 

That's right! I pulled out my feed tube too.....

Naughty Maisie!

our little vampire

Maisie is putting on more weight and now tips the scales at 3lbs 13.5oz - 1,752g. On top of all the milk  Maisie is drinking she decided that she was missing her intake of blood so decided to lower her haemoglobin   levels so that she could get a blood transfusion. All went well and Maisie slept throughout the whole transfusion.

Maisie had quite a lazy day sleeping the majority of it away. Mummy also had a similar day as Daddy made Mummy have a duvet day to try and catch up on and also 'bank' some sleep.

Maisie's oxygen supply continues to be at 100% and her oxygen saturation mid 80's.

Maisie had her visit from the eye doctor today - she really doesn't like him and screamed at him again. Maisie is usually so laid back that nothing really bothers her - Maisie doesn't really cry properly at any other time.

Unfortunately the eye doctor didn't have good news and the ROP in Maisie's eyes has progressed to the next stage. Both of Maisie's eyes have ROP and something needs to be done to stop Maisie becoming blind.

Maisie will not be able travel to Edinburgh for the operation that we hoped for. There are two reasons for this; They would need to intubate (put a tube back down into Maisie's lungs) again to ensure that she is stable during transportation and the operation.  This would cause more damage to Maisie lungs and it would then be extremely difficult to get Maisie off the ventilator again. This is because Maisie's lungs are still very bad. Non of the medical staff would recommend this should happen.

Also, Maisie's chances of surviving a general anesthetic are not the greatest. This upset Mummy and Daddy a lot however it is sometimes a good thing to be reminded that Maisie is extremely ill with her chronic lung disease. It is easy to forget seeing Maisie every day growing, putting on weight and starting to interact with her surroundings how ill Maisie actually is and although Maisie is fairly stable her condition is on a plateau.

So back to Maisie's eyes......what can be done? There needs to be a solution to stop Maisie becoming blind without the need to operate or intubate her.

There is a drug that is used mainly in the treatment of adults to inhibit growth of blood vessels in the eyes. It is something very new in the treatment of premature babies and there is not a great amount of information about it's effects. What is known is that it will inhibit the growth hormone released in the eyes to stop the growth of the blood vessels required to rectify Maisie's sight.

The drug is injected into the eyeball with an extremely small syringe which stays in the eye for about 20 seconds while the drug is released. There are a few risks; possible detachment of the retina, cataracts or infection but this is outweighed by the great benefit that Maisie's eyesight could be saved. There is also the unknown - as this is a very new procedure in premature babies the long term side effects are unknown or it could be said that there is uncertainty in what they could be. It is experimental.

This is a procedure that Mummy and Daddy are willing to try to help Maisie see. There is a lot of discussion happening and if all the medical team are in agreement that is in Maisie's best interest then the procedure should go ahead on Thursday afternoon.

Maisie appreciates your continued prayers 

big girls bed

Maisie has got a new bed;

a new bed for our princess

Maisie is now in a big girls bed. Maisie got a new bed last night which is one of the next big steps that Maisie needed. This bed will help Maisie to start regulate her body temperature on her own and it make's it easier to care for her. It also makes it much harder for Mummy and Daddy not to touch her when she should be resting. The cover over the bed is to deaden the sound around her - like having curtains in your room at home.

Maisie checking out her new toy

Luckily Mummy and Daddy found Maisie wide awake and very alert this afternoon so didn't need to wake her up to play with her.

Maisie has tolerated the move to her new cot well and had not had so many de-saturations today. Maisie's oxygen saturation is still in the low 80%'s but not fluctuating so much.

Maisie's oxygen supply is still between 97-100%.

Mummy and Daddy got Maisie a new toy  with bright colours and noise to stimulate her. She seems to really like it.

Look Daddy, another Frog! 

Tomorrow Maisie is seeing the eye doctor again - hopefully all is well this week.

how big can Maisie get?

It was a lovely day for Maisie spent taking in everything that was going on around her. Maisie had a very active afternoon and was climbing all over Mummy while she was having cuddles.

Maisie is filling out her new outfit already

Maisie had a settled night and must have rested well to be so active today. 

Maisie's blood gases were the same this morning and Maisie's oxygen supply has continued to be high between 97-100%. Maisie had a lot of small de-saturations but is managing to recover on her own.

Maisie's de-saturations are only dropping by a small amount which is good as if it drops by a lot we can't turn up the oxygen any further.

Maisie continues to feed well and now weighs 1.7kg or 3lbs 12oz. She is quickly growing out of her clothes.

Mummy and Daddy have popped up to Inverness to raid Aunty Melanie's house of excess baby stuff. It will be strange for Mummy and Daddy being so far away from Maisie for a night. Maisie will probably not even notice they're missing. 

milk tastes good

 Maisie had a head scan yesterday which was really positive. There has been no bleeding and Maisie's brain tissue appears to be normal. Considering what Maisie has been going through this is Amazing (just like my Maisie). It seems that Maisie is getting all the stimulation that she requires.

Maisie's oxygen supply has been stable at 97% all day and she has not had many desats. which is good.  Maisie has also progressed onto 2 hourly feeds and is accepting them well.

Daddy got cuddles today with Maisie. She didn't do to much sleeping though as she was enjoying being out of her incubator so much. Maisie was continuously lifting her head and looking around. She is getting stronger and stronger. Mummy is sure that Maisie shouldn't be lifting her head like she does but the Consultants are happy with this progress.

Mummy has been washing Maisie's mouth with her milk to help Maisie learn about taste. Maisie's feed goes straight into her wee tummy so this is the first time she has tasted milk. Maisie appears to love it and had a good suck on her dummy too when Mummy dipped it into some milk.

My Amazing Maisie dreaming of lovely milk. 

medal winner

Tonight was family night for Maisie but unfortunately Zach couldn't make it as he had a race. Maisie got a new Hairy Maclary book; Hairy Maclary and Zachary Quack which Meghan read to Maisie along with some other stories. This made up for Zach not being there.

Mummy, I might need the real thing soon! 

Maisie has grown another 90g and weighs 1,620g (3lb 9oz). Maisie is really packing on the weight with all Mummy's milk. Maisie is getting a lot of milk as the consultants are needing her to grow.


At some point Maisie will be a good size and her growth will slow down as they will reduce her feeds - at the moment Maisie is being overfed a little.  

Maisie had a few de-saturation and bradycardia episodes today which needed tactile stimulation to help her recover and also a few that she recovered from herself. The consultants are not to worried and just need Maisie to keep growing. Maisie's oxygen supply has been about 100% for most of the day.

Last night on the ward they held a Baby Olympic Games - Maisie won a medal for "just having a nap"

a good day for sleeping

Maisie slept throughout Mummy and Daddy's visit apart from the last 15 minutes when Maisie woke up and decided that she'd like some attention and some playtime. This made it very difficult for Mummy and Daddy to leave. 


We do love that Maisie is sleeping so well as this means she is growing and Mummy got more cuddles which also helps Maisie grow.


 Maisie is the same today as yesterday, quite stable but with a high oxygen requirement. 

Daddy are you sure this fits? 

new outfit

Maisie is continuing to put weight on and now weighs 1,530g which is 3lbs 6oz. Maisie is putting on the required weight and also taking her hourly feeds well. Daddy and Mummy are getting to feed Maisie which is   more interaction with her which is good.

Maisie is also continuing to sleep well and maintain her oxygen saturation levels but her oxygen supply levels are still high at 97%.

The eye doctor came to check Maisie's eyes today. Maisie still has ROP (retinopathy of prematurity) and is still at stage 2. He will come back and see Maisie next Monday before any further decision is made on what happens next.

What could happen is; her eye will get better by next week and no treatment will be needed, her eye will be the same or her eye will be worse in which case Maisie will need laser surgery. The surgery would happen as soon as there is a bed for her in Edinburgh. Next week is better than this week as Maisie will be one week older and one week stronger so clinically healthier.

Hopefully she will not need the trip to Edinburgh although Daddy might still take Mummy there as she deserves a treat.

Maisie looked beautiful in her new outfit from Aunty Eleanor;

Maisie saying a wee prayer for her eyes.

sleeping

Maisie has been taken off her continuous feed and is now taking her feeds hourly. This is to help prepare Maisie for going home by learning to feed properly.

Maisie's oxygen supply is still high, it hit 100% over night and is currently about 90%. Maisie's lungs are working to capacity. The chronic lung disease Maisie has as we know is bad -  lets pray that the steroids will work.

Mummy and Daddy were talking to the consultant today who told them that it takes about 6 weeks for the steroids that Maisie is on to take effect. Another 4 weeks and we'll find out how they are doing.

Meanwhile Maisie is putting on a lot of weight that leads to good growth that will also help her lungs.  There were no cuddles today as Maisie was sleeping the day away which is also good as while Maisie is sleeping she is growing.

Tomorrow Maisie has another eye test. Hopefully Maisie's eyes will be okay otherwise it's a trip to Edinburgh to get them sorted.

Maisie is eating well, has a good oxygen saturation and her blood gases are good. There are lots of positives at the moment.

My Amazing Maisie is making good progress. 

Moving on

Maisie had a good night's sleep. Maisie's heart rate is back down to what it is normally and her oxygen saturation is good with no major dips.

Daddy dressed me again.....are you sure I look ok in this? 

Maisie is taking a lot of her Mummy's milk and all is working at the other end too.


And so Maisie has put on another 50g now weighing 1,465g or 3lb 3.5oz


Daddy is of course taking all the credit for this because of the amazing cuddles he gave Maisie yesterday.

I think I'll put this hat on just in case so
 that no-one will recognise me...

Daddy was firmly put in his place - apparently it's down to the care Maisie has been getting at the hospital and all the prayers every one is saying for her.

All of this has lead to some fantastic news! Maisie has been moved out of Intensive Care!

Maisie has moved down a room to the High Dependency Unit. She is still in her incubator and still on high oxygen yet she is moving closer to the exit.

Thank you to everyone for their continued prayers.

Cuddles with Daddy

Maisie's temperature has been high lately so she had a blood test today to check to see if there is any infection. All the tests came back clear.

Maisie still has tachycardia (fast heart) which is not of great concern to the doctors but needs to be monitored. Maisie's oxygen supply is still above 90% and her oxygen saturation hovering in the 80's but with the growth that Maisie is showing will hopefully start to improve.

Uncle Carl and Aunty Eleanor came to visit today. Uncle got told off by the Nurses for opening Maisie's incubator to give her a cuddle - but as those of you that know Uncle will guess he charmed his way out of trouble.

Daddy got a chance to cuddle Maisie today;

look...............matching hair 

Daddy had a great day! 

Another frog

Maisie is packing on the pounds as they say.........in the last two days Maisie has put on 105g and weighs over 1.4kg which is about 3lb 2oz. This is wonderful news and the consultants are very happy.  Good News! 

What's Maisie looking at?
 

Maisie was a little sick today but nothing to worry about it's just that the doctor's are giving her so much of Mummy's yummy milk to help her grow. It's definitely working at the moment.

Maisie's oxygen supply is a little better today at just over 90%

Maisie got another frog that was knitted by Grandma Jan. The frog is lovely and cuddly and it is also massive compared to Maisie. It's bound to get lots of cuddles when Maisie is bigger. Thank you Grandma Jan,

probably the large frog on her incubator....

(look closely at the top photo - Daddy thinks that Maisie's hair looks beautiful)

family night out

After a very active day and night Maisie slept most of the day and was a good girl.

Maisie's oxygen saturation has been going up and down but settled at a great level this evening when Meghan was reading to her - she really enjoyed her Fairy Tales although we all decided that they are a little scary!

We had a lovely evening as a family with Maisie watching over us. We had a break at 7pm when the Nurses do a hand over and went for a Fish Supper - Daddy must have been in a good mood as he let everyone eat in the car - it was also raining which might have helped.

Mummy was not getting a look in this evening

Maisie's oxygen supply was back up at 100% when we all left - to much excitement. Hopefully she will get a good nights sleep and the Nurses will be able to turn it down a little. 

Maisie keeping a watchful eye on her  Owls

phenomenal

Maisie has put more weight on; 45g and now weighs 1.3kg or 2lbs 12oz. When Maisie gets to 1.5kg she may get out of the incubator into a heated cot.

Maisie was once again a little naughty and exploded at both ends this morning all over the nice nurse that was looking after her. This could be due to the medicine that Maisie is taking upsetting her stomach a little. Nice clean nappies for Daddy today though :)

Maisie's oxygen supply is at 90% and her heart rate still a bit high but the doctors are not to worried about that at the moment.

Maisie enjoyed Aunty Rhona's wee owls with all the rattles and colours hopefully giving Maisie the stimulation she requires. Maisie got out for more cuddles and was very active, quite a wriggler today and when she got back to bed looked like she was doing some Pilates moves.

Maisie is stable at the moment, we just need patience and she will  grow.

Here's another picture to show how wee our Amazing Miracle is;

Phenomenal - My Amazing Maisie

(for overseas readers Irn Bru is the number one soft drink in Scotland; can size the same as a Cola)

what has Daddy dressed me in?

Maisie had a lovely day and was bright eyed and wide awake most of the day.

The carbon dioxide in Maisie's blood has improved but the oxygen has got slightly worse. Maisie's heart rate is also still high which the doctors are keeping a close eye on and her oxygen supply is about 87%

not to sure Maisie likes the outfit Daddy put on....

Maisie had some lovely cuddles today with Mummy which really helped and when Mummy and Daddy left Maisie she was very relaxed and her heart rate had reduced. Maisie was left wearing her Zaky (the hand) which is really helping to keep her settled.

"ok so now I'm not happy with Daddy"

Maisie definitely protested about the outfit that Daddy put her in, hopefully Maisie will be more impressed tomorrow as Daddy is going to bring in some toys to help stimulate her. We all talk to Maisie, read her stories and ensure that Maisie hears us all having fun as a family.

Now is the time Maisie is starting to look around and will be affected by her surroundings and so it is important to help Maisie with her development. It's particularly important to help Maisie due to the side effects the steroids may have on her neurodevelopment  - we'll start with the wee owls that Aunty Rhona gave Maisie.

and so the crying starts

Maisie had a long night working very hard trying to keep her oxygen saturation at an acceptable level and there has been a noted increase in Maisies's heart rate.

This could be due to a side effect of the sildenafil but most likely due to the low haemoglobin count in Maisie's blood. Maisie had another blood transfusion which in turn showed an improvement on her oxygen saturation. Maisie's oxygen increased up to 100% during the night decreasing back down to an average of 90%.

As Maisie was having a blood transfusion her feeds are stopped - causing Maisie to be hungry and so it follows a little grumpy just like her Daddy when he's not been fed. Maisie will be back on full feeds tonight.

Maisie needs all the food she can get as she is using a lot of energy breathing under her own steam. Maisie only had a weight gain of 10g in the last couple of days.

Maisie's head is the size of a credit card

Maisie had another routine eye test today which unfortunately showed that there may be a wee problem in her right eye. Maisies ROP is at stage 2 which is not serious yet. It may heal itself or may require laser treatment. The eye doctor will be back to have another look next week. If Maisie's eye needs treatment it may involve a holiday to Edinburgh.

When Maisie was having her eye test she protested by crying quite loudly - previous to this Maisie has only let out a few small squeaks. It is Great to know that her voice is working. Mummy loves that Maisie is crying

While getting her nebuliser this evening, something that Maisie dislikes there was some more crying that Daddy and Meghan heard - cute but not something that Daddy feels should be encouraged.

Mummy had a happy day

Maisie had a very good night and got her Oxygen supply levels down to 80% - this is a great improvement!

The consultants are happy with Maisies stability and decided to try some more ways to help her breath and grow.

Firstly Maisie was taken off the CPAP (continuous positive airway pressure) machine - and put on a High Flow machine. This forces Maisie to breath on her own without the support of the pressure the previous machine aided her with. Maisie's oxygen supply is still at 80% but will hopefully continue to fall.

Maisie has taken to the new breathing apparatus well so far. Maisie had her blood gases checked after a couple of hours and they had improved slightly. GOOD NEWS. It is also much more comfortable to wear giving Maisie reduced stress.

look at my new tubes....

Maisie's visitors are always shocked by how small Maisie is when they actually see her. In a lot of the pictures on her blog the feedback is that she looks like a normal baby.To highlight again how wee My Amazing Maisie is (although she is growing) here is another picture with Daddy's hand;

Maisie loves holding Daddy's hand

Some photos will soon be posted with some everyday items to indicate Maisies true size.

By the way have you noticed the colour of Maisies hair now her wee hat is off? It's getting lighter - could it be getting more ginger?  Cousin Lynne and Iain visited today and Lynne is confident that Maisie is going to be one of the lucky few.

Maisie was also well enough to get more cuddles which made Mummy really happy. Kangaroo care is really helping.

The second thing that the consultants have decided to do for Maisie is to try her on another drug. Maisie will take Sildenafil four times a day. This is a vasodilator which causes the blood vessels to relax allowing improved blood flow, particularly decreasing pulmonary arterial resistance and pressure and will hopefully allow for better exchange of gases. This will help improve delivery of oxygen to all Maisies organs and stimulate growth - just what Maisie needs.

By the way some of you may know Sildenafil better by it's trade name..............Viagra.

oxygen reduced

Maisie has been munching on Mummy's milk and has put on another 40g and weighs 1255g (about 2lb 11oz) Not as much as we'd like (30g per day) but it's growth which is the main thing. Maisie currently gets weighed every 2 days.

Maisie was sleeping most of the day which encourages growth and she had no major changes in her saturation or heart rate. Good News today is that Maisie's oxygen requirement fell to 85%, it has been at that level since the early hours of the morning.

Maisie got visits from Aunty Eleanor and Uncle Carl who brought a wee wooden frog that Aunty Eleanor found on Skye. Uncle Douglas and Aunty Margaret also brought Maisie a big frog that Daddy is to put in the garden. More frogs for the wee Croker. Maisie also got her first Piggy Bank from UD and AM with some pennies in it - lucky Maisie.

Maisie must have been very excited with her visitors and when Mummy and Daddy went to change and wash Maisie before they left (early as going for dinner with friends) she did her trick of squirting all over the incubator - either that or she was protesting at Mummy and Daddy trying to leave early.

friday the 13th

Nothing unlucky about today :)

No big improvement but Maisie was stable once more. Oxygen requirement is averaging between 98% and 95% with oxygen saturation staying in between 80-90%. Blood Gas checks are now being checked every 48hrs.

Maisie's heart rate is still a little high but she appears to be very relaxed and unstressed.

Having a lovely lazy day.....or is Maisie
pretending to be an elephant?

Maisie's Great Grandma Croker isn't very well at the moment your thoughts and prayers would be appreciated for Grandma

more cuddles at last

Maisie has not had a cuddle from Mummy or Daddy for over a week as she has not been well enough but Mummy got her wish when arriving at the hospital and spent an hour and a half giving Maisie a bit of Kangaroo Care.

Happy Mummy

Maisie was on her best behaviour today as she knew that Grand Uncle Bill and cousin Eleanor were coming to visit.

Maisie's oxygen supply was as low as 95% but averaging 98%. Not 100% so an improvement. Maisie's oxygen saturation has been quite constant  and again no significant ups or downs with Maisie's heart rate that she couldn't sort out herself.

Maisie's blood gases were much the same,  Carbon Dioxide still high with Maisie's wee kidneys helping to compensate for this.

Maisie's been putting alot of Mummy's milk away and has put on weight over the last couple of days. The target weight increase required each day is 30g. Over the last two days Maisie has put on nearly 100g and now weighs in at 1215g or 2lb 10.5oz. 

Lets hope that this is the start of the growth that Maisie requires.

(Daddy heard that the nurses on night shift ordered in pizza last night - could this be part of the reason Maisie has put on so much weight?)

so cosy

Maisie had no significant de-sats today and any that she did had Maisie managed to stabilise herself.

Maisie's oxygen supply was at 95% at one point last night and at 97% for a while this afternoon. It is mainly at 100% but it's good to know that there are short bursts of improvement. Maisie had a bit of tachycardia during the afternoon (high heart rate) which we will keep an eye on. Maisie has a strong heart as we already know and it is just making sure that it keeps her oxygen levels up.

Blood gases are showing high carbon dioxide levels again which Maisie's kidneys have adjusted to and are maintaining a good pH level for the blood.

Daddy had Maisie to himself for a lot of the day and they spent a while putting Maisie's photograph album together along which discussing what Mummy, Daddy, Zach, Meghan and Megan will need to prepare for at home before Maisie gets there (incidentally the workmen have at last started on the house).

Mummy had to work today so only got a short visit this evening but it was a lovely evening with the whole family together as Zach and Meghan visited too (they'd both only just recovered from  T in the Park - well almost).

Maisie was again good and stable when we all left showing good sats and heart rate with 100% oxygen. She looked very cosy all dressed up again;

check out the bootees

stable day

Maisie was very happy when she was taken out of the incubator to get weighed. Maisie's oxygen saturation went up to over 90% for a while which is great for her given the last few days - seems like she is happy when she's getting attention and being involved in what's happening.

Maisie has put on 29grams and now weighs in at 1125g ( 2lb 8oz). The Consultant has upped the amount of Mummy's milk Maisie is getting again - back to feeding Maisie to get growth. Maisie is also getting more regular doses of Steroids.

Maisie only had one significant de-saturation over night and there have been no drastic de-sats. nor heart beat changes all day. Bradycardia is when the heart beats too slowly  and tachycardia is when it's too high - Maisie has a bit of both going on but mainly bradycardia.

in Daddy's loving hand.....

Maisie was good and alert and back to her old nosy ways checking out everything that was going on around her. It was really great that Maisie was back to being more interactive and Mummy spent a good half an hour or more just chatting away to her (which gave Daddy's ears a rest).

Although Maisie seems more stable today there has not really been any change in her blood gases and she is still on 100% oxygen. Please pray that we see some changes tomorrow and that the steroids are taking effect .

looking as beautiful as ever

My Amazing Maisie is looking as beautiful as ever today but unfortunately she has not particularly improved overnight and is now on 100% oxygen.

Maisie is still struggling to maintain her oxygen saturation level and her heart rate is still fluctuating, but Maisie's carbon dioxide level is improving which is good.

Mummy and Daddy had another meeting with the consultant today about what the next steps may be; it all depends on Maisie.

Being on high oxygen (anything over 60%) can cause damage to the lungs however most of the damage to Maisie's lungs is down to her initial problems. The high oxygen is not helping to give the lungs time to heal though.

It has been decided to give Maisie a higher dose of steroids which gives a higher chance of side effects but will hopefully help reduce the oxygen requirement and improve Maisie's overall condition.

The effects of the steroids should hopefully be seen over the next couple of days. This needs to work to keep Maisie off the ventilator.

The results of the tests so far show that Maisie has no infections - Good News.

a bit better

Mummy tried to cheer Maisie up with a bed bath and some new clothes that Aunty Cat had bought;

nice pants! 

Maisie is a little better; her gases have improved, especially the carbon dioxide reading.

Maisie is also back on full milk feeds and her oxygen intake was reduced for a short time.


However Maisie is still having big dips on her oxygen saturation and heart rate which is really quite frightening for Mummy and Daddy.

Maisie seemed fairly settled when we left this evening but she was on a lot of oxygen (96%). 

Hopefully tomorrow Maisie will be more settled.

does my bum look big in this? 

Saturday - not the best of days

Maisie's oxygen saturation was up and down like a yo-yo. Maisie's heart rate also dropped quite significantly several times during the day and her oxygen supply needed increased again (it can't be increased much more). Maisie's gas checks also showed that the levels in her blood were poor.

It was quite an ordeal for Maisie as on top of not feeling to good she had lots of test done. Maisie had blood samples taken, urine samples taken and even a lumbar puncture to take a sample of fluid from her back. All these test were to try and find out why Maisie was not having the best of days.

This was very upsetting and also very painful for Maisie but a slightly positive sign was that she fought against the Doctors and Nurses, her response shows that she still had strength in her.

The initial feedback from the samples shows there are no infections which is also a positive sign. The full results will be back in two days. Maisie has been given another course of antibiotics just in case.

Maisie also had x-rays to check her lungs which also gave positive results showing that they seem to be improving a little.

Maisie's tummy is very full from all the milk that she has been drinking and this could be putting pressure on her diaphragm making it difficult to breath so her food was stopped and Maisie was put back on a drip.

What Maisie needs is a lot of rest which wasn't happening with all the handling Maisie was getting from Doctors and Nurses. Ideally when Maisie is in this condition it is best to leave her alone but with the sats dropping all the time she ends up being handled even more. It's hard to get the balance right.

Some of what is happening could also be due to the side affects of the steroids but as this is an unknown factor it is best to do the test to try and find out what Maisie is up to.

It is not really known why Maisie had such a bad day. It's all part of Maisie being very ill and having Chronic Lung Disease. It's is one of those backward steps that is always hoped will not happen. Maisie is using all the strength she has in her and is getting tired.

All the fantastic Doctors and Nurses are doing all that they can to make sure that Maisie doesn't go back on the Ventilator.

By the time Mummy and Daddy left this evening Maisie was a little more stable, her blood gas checks were back to normal (well not normal but back to what can be expected from Maisie). Maisie was also back on a little of Mummy's milk and if this goes well then it can be increased slightly which will allow Maisie to get a dose of steroids which she couldn't have on an empty stomach.

Maisie was back to having a wee look around and was more alert which made Mummy and Daddy happier to leave her.

Maisie needs a rest 

Maisie will be having more regular gas checks for the moment to keep the Doctors and Nurses informed on how she is doing. 

a wee snooze

Mummy read Maisie a lovely book called My Dad which Maisie enjoyed very much as she learnt so much about Her Dad.

My Dad; "He's all right, my Dad. He's as strong as a gorilla and as happy as a hippopotamus. He's a great dancer, a brilliant singer" etc...as you may know it goes on about how great Dad is.

What the book failed to tell Maisie about her Daddy was that while Mummy was busy expressing milk for Maisie's dinner, Daddy, who had been left in charge took the chance to have 40 winks and didn't even wake up when Mummy came back, not only that but he had slept through the consultant coming to see Maisie. He must have been very tired.

Maisie's saturation levels are still a bit up and down - it can take a while for the steroids to take effect. Maisie has also lost a little weight but nothing to worry about it's just 14g and the consultants have upped the amount that they are feeding Maisie which she is coping with fine.

Maisie seemed more settled this afternoon than she has been. Mummy and Daddy think that it could be down to the "hand" rather than the steroids.

the next step

Maisie is eating well and growing which hopefully leads to lung tissue rejuvenation, however this growth is not happening quickly enough.

Since Maisie finished her course of steroids last Sunday the amount of oxygen she requires has been slowly increasing and is unfortunately getting to the point where it will not be able to increase any further. The carbon dioxide level in Maisie's blood is also increasing steadily. This all contributes to the fluctuations there have been with Maisie's oxygen saturation.

This is due to Maisie's severe Chronic Lung Disease which does not seem to be making a lot of progress in getting better. Maisie's little body is working very hard to compensate and adjust for this and in some aspects is doing well  and coping but is taking its toll and Maisie's reserves are running low (and they weren't that high to start with).

Once it gets to the point that the Oxygen levels cannot be increase any further Maisie will have to be intubated again, putting a tube down into the lungs and back on the ventilator. If Maisie goes back onto the ventilator the chronic lung disease will not improve and it will be extremely difficult for Maisie to get off it again. 

Mummy and Daddy had a meeting with the Consultants about the next steps. Maisie needs to start making better progress and it has been decided that the best way forward at the moment is to try another course of steroids. Maisie will get small doses of steroids both orally and through a nebuliser allowing Maisie to inhale them straight into her lungs.

There are side effects; some of them could be temporary like retaining water, blood sugar levels increasing, more acid in the stomach and stunted growth. These tend to be relatively minor and easily corrected once the treatment is completed. Long term side effects could be more significant and lead to neurological disorders.

So far Maisie has been strong and previously there have been no major signs of side effects when using steroids so lets pray that this will continue. The benefit of Maisie taking steroids is that they reduce the inflammation of the lungs allowing Maisie to be treated with less oxygen helping her lungs heal more quickly.

Also if the amount of oxygen that Maisie needs can be reduced it will give more room for oxygen levels to increased  if needed in the future.

It was agreed by Mummy and Daddy to take this course of treatment due to the risk of Maisie going back onto the ventilator. Steroids are only considered when there is a severe case of chronic lung disease.

How long will the steroid treatment last? This all depends on Maisie and will be reviewed daily.

Maisie seems to look at us very knowingly (as you may have seen from her many photos) and we are praying that this treatment will lead Maisie in the right direction.

Maisie loves her new comforter, it feels like Mummy is holding her all the time;

feeling safe in Mummys absence

Maisie gets dressed

what's happened? 

All the clothes available were just a little bit big. Maisie will grow into them and then out of them very soon at the rate she's growing. Maisie ended up had a couple of changes as she filled her nappy and it leaked - twice.

Daddy decided that this was in protest to wearing such huge clothes and decided just to leave Maisie to sleep in her nappy (easier than changing her again).

Maisie has put on another 55g  and now weighs 1.1kgs or 2lb 7oz . The consultant is happy with her continued growth and has increased the amount of milk she is getting.

keeping an eye on the world

Mummy is happy as Maisie has been smiling all day. Daddy is sure that it was more likely that Maisie needed to fill her nappy.

Other than needing to fill her nappy Maisie had another great day snoozing and eating. Maisie is spending a lot more time with her eyes open and certainly seems to be taking in every thing that is happening around her. Whenever there is something going on in the ward Maisie opens her little eyes as if to check out what's happening,

taking it all in, listening to everything that's going on....

Maisie is getting a lot of gifts including a lot of soft toys and knitwear (thank you Grandma Jan). Thank you  for your gifts everyone is very kind. Here's a selection as arranged by Mummy and Meghan; 

every toy bigger than Maisie

A dear friend told us today that her favorite quote from Winnie the Pooh is;

 "sometimes, the smallest things take up the most room in your heart"   

........this certainly seems the case for My Amazing Maisie. 

full of energy

Upon arriving at the hospital Mummy and Daddy were informed that Maisie had been naughty making more mess for the nurses. Once more Maisie managed to fill several nappies in extremely quick succession.

Daddy eventually had his turn at Kangaroo Care. A full 2 hours of cuddles did both Daddy and Maisie a lot of good - it was a great bonding experience. Having skin to skin care has a big effect on Maisie and she was really settled and relaxed sleeping on Daddy's chest.

Sorry Maisie, Daddy can't help you with food...

The consultants are happy with Maisie and just need her to continue to eat well. The more Maisie eats the more she will grow and the better her lung tissue growth will be.

After cuddles Maisie was back to the incubator full of energy and she appeared to be interacting and smiling with Mummy;

Mummy said that "this is the best Maisies ever been."

 It was a good day. 

first of many awards

Maisie had another blood transfusion over night which went well. Unfortunately Maisie is not yet showing signs of the benefits from this as her oxygen saturation level is still fluctuating.

 Apart from this Maisie seems to be doing well; continuing to drink large amounts of Mummy's milk and sleeping a lot. Maisie was out for cuddles again with Mummy - it might be Daddy's turn tomorrow, depends what Mummy says.

Maisie was presented with her first certificate.

cute

Grand Aunty Eleanor and Grand Uncle Carl added to wee Crokers frog collection today