spitting the dummy out

Maisie is meant to keep her mouth closed while wearing her mask (trunk) but she'd rather catch flies. To help keep the oxygen in rather than escape through her mouth Maisie has a tiny dummy. As we already know Maisie is prone to wee tantrums and of course she is very good at 'spitting her dummy out.' Today is the first time that Maisie had her dummy in for any length of time and was only for a few minutes at that. While the incubator was open it even ended up on the floor. 

Maisies oxygen saturation was a little unstable, one minute it's low and the next it's too high. This is due to Maisies chronic lung disease, it can depend on how she is lying and how much she is wriggling about. Maisie is still very active which is good but doesn't always allow for accurate readings. 


A blood sample was taken to check her haemoglobin levels and if they're low again it may be time for Maisie to have another transfusion. Just waiting on the results. 


It was noted today that Maisie hasn't cried yet. Maisies room mate had a few cries but Maisie is brave and doesn't feel the need to cry.

mucky maisie

Daddy left Mummy in charge while he went out for dinner with a friend last night so Maisie decided to be naughty. While Mummy was changing her nappy Maisie tried the same thing that she had tried on Daddy a few days ago and kept filling her nappy however Maisie did it with so much style that not only did Maisies nappy need changed but the whole incubator!

Not so innocent 

Maisie was out getting cuddles again this evening with Mummy while Meghan read her bedtime stories and taught her some Scottish phrases from Hamish McHaggis from Corrie Doon.

All these cuddles are working and Maisie was weighed again before she went back to bed. Maisie has put on another 84g or about 3oz and now is over the 1000g magic number weighing in at 1070g or 2lb 6oz. 

We also decided to measure how tall Maisie is;

still some growing to do

Maisie is approximately 1 foot 2 inches ( 36-37cm).

How heavy?

Maisie has put on 21 grams in the last 2 days - not sure what that it is in old money but Maisie now weighs 2lb 3oz (986g). The consultants told us that 1000g is the magic number. Maisie is doing well, it's a good thing that Mummy is producing so much milk. Eating is really good for Maisie and to continue to put on weight is vital.

The dressing from Maisies operation was taken off and she has a very tidy little scar which will probably disappear or if not will be hidden by her bikini line. (if she is ever allowed to wear one).

a little monster

Maisie got another book today from Carol which Daddy read while Mummy was getting cuddles from Maisie. Daddy wasn't sure who enjoyed the story the most Mummy or Maise. It was all about a baby that wasn't a baby at all but a little monster - not sure what that is meant to say about Maisie;

does this look like a wee monster?

Maisie yet had another good day, her feeds have been increased again and Maisie will hopefully be a little heavier when they weigh her tomorrow.

Daddy's turn

A parcel arrived today from Aunty Cat and Uncle Alex, Maisies library is quickly growing. Thank you. This was a new charactor to Maisie; Hamish McHaggis and today Maisie was at a Highland Gathering of the McHaggis'. Daddy also got a t-shirt in the package, I may model it another day.

Maisie had a good night and day. Maisie is taking more of Mummys milk and is now weighing in at 2lb 1oz (945g)

very content

Today was Daddys turn to get a cuddlle from Maisie.........



Mummys not around is she?



Big bootees to fill

Maisies day was a little up and down, one minute her Oxygen saturation was high and then the next low, up and down it went - not drastically but enough to make her unsettled or maybe it was Maisie being unsettled that was causing the fluctuations. Maisie is such a wriggler.

Maisies oxygen supply is fairly high again as is the level of Carbon Dioxide in her blood. This isn't to much of a worry though as the Consultants only require the gas checks every 12 hours (they used to be as often as every hour).

a very proud Mummy

Maises was out and about again on Mummys chest getting more cuddles (must be Daddys turn soon).

After an hour and a half of lovely cuddles Maisie was well and truly relaxed and rested and very stable, the Kangeroo Care really works wonders. The more of this that Maisie can get the better.

Daddy got to change Maisies nappy as usual (must be Mummys turn soon) and today was a lot of fun for Maisie, Daddy changed the first one, nice and messy and while his back was turned Maisie filled the clean nappy. So Daddy got Maisie all cleaned up again and yes you've guessed it Maisie promptly filled the next nappy. No wonder she's not putting on weight. Maisie certainly knows how to keep Daddy busy.

Maisie is starting to get quite a lovely wardrobe of hand knitted outfits from some very exculsive designer labels - we will be arranging a fashion show very soon - pictures to follow.

Todays addition was a lovely pair of bootees to match a wee hat Maisie got recently - they are a little big for Maisie but fitted Mimzy the rabbit beautifully. Thank you Penny.

green to match Maisies eyes?

Sleeping the day away

Eating and Sleeping..... these are the two best things for Maisie at the moment and two things that she seems to be getting good at (just like Zach and Meghan). Good thing Mummy is supplying lots of tasty milk.

happily sleeping and growing

Maisie has been fairly settled only opening her eyes occasionally to look lovingly at Daddy reading his paper and also to look in amazement at Grand Uncle Douglas' freckles that appear to have joined up having spent yesterday with Aunty Margaret at the Royal Highland Show.

Today is Maisies last day on her steriods, lets pray that she will continue as steadily this coming week without them.

Bathtime

While Maisies heart is now working much more effectively and her lungs are trying to work better it needs to be remembered that all of wee Maisie is underdeveloped with her born at 25 weeks.

Maisie has been taking diuretics which help reduce water retention and take down Maisies swelling. This means Maise wees more. Maisies kidneys are not fuctioning properly yet and one of its functions is to measure the amounts of certain minerals that the body requires and another is to remove excess water and waste. Sodium is one of these minerals that is important and is used for balancing blood volume and blood pressure. With the kidneys not functioning properly Maisies sodium can get low so she is having a supplement added to her milk to help keep the balance correct. All part of fattening her up.

Mummy gave Maisie a Bed Bath today, which Mummy really enjoyed - even more than Maisie did. While Maisie was having her hair washed (just before the conditioner was combed in) the subject of hair colour came into the conversation, not prompted by Daddy at all. It all started with Meghan asking when Maisie would lose her hair. It is usual for babies to lose their hair before the rightful colour grows in.

The kind Nurse gave us an answer which was forgotten by all as the Nurse continued to tell us that the current colour of Maisies eyelashes and eyebrows would indicate what Maisies hair colour will be - well you can imagine the rush to the incubator to study very closely Maisies eyelashes and eyebrows.

Meghan gave the final answer  -  "dark ginger or dark auburn" 

While Daddy was out of the hosptial on an errand visitors arrived to see Maisie - it was noted by Daddy on his return that more of his donuts had been eaten, he knows who the culprit was and will track them down (yes you Alfie). Maisies Daddy appreciated her other visitors (Brian and Harry) managing to resist and leave the last one.

Brother Zach enjoyed becoming 18 very much last night and didn't visit Maisie today as he was on a coach trip to an atheletics meeting, feeling a little bit worse for wear.

fed up

Photo of Maisie dressed as promised......

a little big maybe?

Maisie had all her tubes and canulas taken out and now only has a feed tube down her throat and the trunk attached to her nose. This will make Maisie much more comfortable with less chance of infection.

Maisie has lost a little bit of weight which is due to loss of fluids which is a good thing. The consultant is very happy with Maisies current progress and the big focus going forward is to feed Maisie on her Mummys milk to help her grow big and strong. Maisie needs to be fed up.

How many more Uncles can Maisie have?

Grand Uncle Bill came to visit today, it was really lovely to see him and Maisie was particularly happy with the purple piece of paper that Uncle gave her. Daddy has taken it to put in her savings towards her shoe fund. Thank you Uncle Bill.


Once again Maisie was out of her her incubator today for more cuddles with Mummy.

Maisie getting better

Maisie is 5 weeks old today and has had a fantastic week.

Eye test day

Maisie had an eye test today.  All premature babies born before 32 weeks and less than 3lb 5oz (1.5kg) are at risk of ROP (retinopathy of prematurity). This condition damages or detaches the retina of the eye which can lead to reduced vision, or even blindness. It is caused by lack of Oxygen to the blood vessels in the eyes. Stevie Wonder unfortunately suffered from this. It can now be treated to reduce the damage.

The Eye Doctor gave Maisie eye drops to dilate her pupils and then checked her retinas - it was an uncomfortable experience for Maisie having a light shone in to her eyes and tired her out. This will be done every two weeks.

Good News - Maisies eyes are both good.

Maisie also had another blood transfusion today - just a top up to ensure that her haemoglobin levels are high enough to carry blood effectively. Unfortunately while Maisie is having this her food is stopped so that her fluid levels do not get to high. Don't worry though they increased her amounts of milk this evening to compensate.

Aunty Cat and Uncle Alex visited again this afternoon and read Maisie a story about a Hungary Caterpillar - a little bit cruel considering Maisie was on a fast.

Maisie looked beautiful today and she was dressed in clothes for the first time. Photo to follow.....

Mummy gets a cuddle

At last

Today Maisie escaped from her incubator for 1.5 hours to get a cuddle from Mummy. After a stable night it was decided that Maisie and Mummy should get a bit of skin on skin time where Maisie is held directly against Mummys chest. This really helps with Mummy and Maisie bonding, it also is a great way to stimulate milk flow along with helping Maisie sleep more deeply helping her growth and development.

Daddy will also get a go to help with his bonding with Maisie. This kind of stimulation for Maisie, Mummy and Daddy is sometimes called Kangaroo Care. Today Daddy only got to change dirty nappies.

Auntie Cat and Uncle Alex came to visit Maisie today bearing gifts;. Maisie got a new book "Did you know you are gorgeous?" - I'm sure Maisie knows this already as so many people tell her. Maisie also got some wee mittens and hats and some very fashionable nappy wraps which are a little big but as soon as they fit you will get photos of Maisie modelling them.

Maisie was looking well for Aunty and Uncle

Her cousins also sent alot of things with Auntie Cat:  Charlie and Gracie wrote a lovely letter, sent a Bedtime Bear and a Very Hungary Caterpillar. Also Ella and Ava sent some cards and a picture that they'd made.

Bedtime Bear is all ready for bed and it's only 3.30pm what a good bear

"Dear Maisie ,

We thought that you would like a bedtime bear like ours.

We love you

Gracie and Charlie xx"

Maisie loved these gifts and was expecially pleased to see the life like drawings of Gracie and Charlie.

Tomorrow Maisie has the first of her eye tests - we'll let you all know how she gets on. Not sure how Maisie will do as although she is well read for her age we're not to sure that she can actually read.

a gallon of milk

Daddy has put together all Mummys spare milk to be donated to the milk bank and there is a gallon of it (about 4.8l) which should help lots of babies. Maisie needs about 130ml a day so that's more than a months supply.

Maisie is doing really well today and moved onto the next stage with the CPAP. This means that the machine is no longer giving Maisie forced breaths and she has to breathe on her own. The CPAP machine gives a set pressure to ensure that Maisies lungs stay open and don't collapse. This pressure is not as high as it has been which is good progress.

Maisies machine also gives her Oxygen and this level is reducing too. This morning the oxygen was at an 80% concentration  and is evening it was down below 50%. This is good for Maisie.  Normal Oxygen levels in air are 21% so still a long way to go. 

Maisie is really not liking her elephant fancy dress outfit

Poor Maisie looks a little fed up - Maisie is determined to get off the CPAP.

still on the CPAP machine

It is now 36 hours since Maisie stopped using her ventilator and things have been going well all day. Maisie is working very hard to breathe on her own however it is tiring. Maisie is drinking plenty of Mummys milk which is helping to keep her strength up.

Maisie had another scan on her head which shows no change since the last one which is good news.

Gemma and Sarah visited Maisie today with their Mum Nicola, they brought a lovely book with them full of nursery rhymes, songs and fairy tales. They told Maisies Mummy that the book had Jingle Bells in it so Mummy shook the book? ......................Everyone was in stiches :)

Tomorrow Maisie will take the next step towards breathing on her own with the CPAP machine giving less support.

Maisies wee face

As promised last night, here are a couple of wonderful pictures where you see Maisie face for the first time without any attachments.

the fantastic team at Kirkcaldy added the comments;




 Maisie wondering where her tube has gone




Maisie having her first tantrum 

 Her face is a wee bit crusty but the pictures had to be taken very quickly.

Fathers Day....

.....Daddy gets another great present today.

the card was bigger than Maisies bed!

Maisie had a busy time preparing for Fathers Day;

Firstly during the night Maisie had to wriggle about so much that the cannula in her arm needed to be taken out. This was the cannula used for Maisies morphine so it was decided to see if Maisie would be able to cope without - she did.
Secondly Maisie secreted alot of fluids which clogged up the tube from the incubator so that it needed replaced however it was decided to leave the tube out.

Maisie has been off the Ventilator since 10 o'clock this morning.

Maisie is now on a CPAP machine (Continuous Postitive Airways Pressure) which helps Maisie focus on breathing using air flowing through a small mask over her nose. This applies a pressure to keep Maisies lungs inflated and supports with Oxygen.
Maisie has to breath in and out on her own with the support of CPAP - the gas checks on her blood show that Maisie seems to be coping fairly well at the moment. 

getting closer to breathing on her own

We pray that Maisie has the strength to keep this up. She should be on just Mummys milk tomorrow which it the best thing for Maisie to grow.

Daddy (and Mummy) was treated to dinner by Zach and Meghan this evening, we had alot of fun and we all wished Maisie was there particulary Zach who would would have like one more person to split the bill with.

In Daddys card from Maisie were some great photos that must have been arranged by the excellent Nursing staff - they were of Maisie with no masks or tubes that were taken before the mask over Maisies nose was put on. Daddy will scan them and let you all see Maisies face tomorrow.

on the espresso again

With both Mummy and Aunty Rhona to get to the hospital to see Maisie today Daddy should have know that they wouldn't leave on time. If only they had..... 2 minutes before they arrived at hospital Maisie had been out of her incubator to be weighed. A missed chance to hold her - oh well there will be many more opportunities. Maisie has been putting it on and now weighs in at 2lbs! (910g)

Maisie thought that the Jubilee celebrations were last week Aunty Manu

It was a busy day for Maisie with visitors, Aunty Manu, it was noticed that she hadn't brought a lasagne with her this time. Aunty Eleanor and Uncle Carl, treating everyone to coffee and cake, brother Zach, who spent alot of his time on the internet looking for a car and of course Aunty Rhona who seemed to thoroughly enjoy her visit and took over from Daddys duties of reading to Maisie.
Meghan couldn't make it today as she was away for the weekend walking and camping for her Duke of Edinburgh award. Hope the tent hasn't been washed away in all this rain we've had today.

The current pressures on the ventilator have been changed today to encourage Maisie to breathe on her own. The plan the consultants have is to start reducing the morphine doses so that Maisie will hopefully be weaned of it by the morning, this will mean that Maisie will be able to be back on larger amounts of Mummys milk - the outcome may be, if it all goes to plan that Maisie will be tried without the ventilator on Monday morning.

Daddys most perfect solo espresso (Maisie) is also back on the Caffine as a stimulant to helps with her breathing,

The best birthday present a Daddy can have......

My Amazing Maisie!

lucky Daddy

Today Maisie was 4 weeks old, considerably younger than her Daddy who hit the big 40. Thank you for all the cards  and gifts.

Maisie has been recuperating after a busy couple of days, the operation and then the travel back to Kirkcaldy has really tired Maisie out. The next steps are to try to wean Maisie off her Morphine so the Doctors will reduce the dose slowly when Maisie lets us know she is ready.
Then Maisie needs to increase the amount of Mummys milk she is taking to help her grow.

Maisies lungs are still not good, getting the balance between taking away the Morphine and increasing her feed should hopefully lead to improvement.

Aunty Rhona came to visit today, she couldn't believe how tiny her niece Maisie is. Aunty Rhona bought Maisie some new toys and a new book. Maisie is looking forward to Aunty Rhona reading her the book as she's heard that her Aunty is a wonderful actor.

making sure Maisie featured in the photo

Maisie is home in Kirkcaldy

What a great day!

Maisie has had a good day and was stable enough to get home, well back to the Victoria in Kirkcaldy.

Bye Bye Glasgow

A big thank you to all the Surgeons, Doctors, Nurses, Transport People, Housing folk and anyone else that helped out with Maisies stay in Glasgow Mummy and Daddy really appreciated everything that you did.

The hospital tried to lower the pressure they give Maisie today but she is not quite ready to be weaned off the ventilator yet. The pressures are back up and Maisie is getting a higher ammount of Oxygen. This is all part of Maisie recovering from yesterdays operation.

With Maisie having her operation and fasting Mummy has been adding to her milk mountain. Daddy did a bit of research and arranged a meeting with a lady from the Donor Milk Bank. Breast Milk is particulary important for premature and ill babies but sometimes mothers of these babies are unable to provide breast milk. Hopefully Mummy will be able to help some other wee babies as well as Maisie.

Daddy also found away that he may be able to help and also have some fun,,,, Daddy is going to register with ScotsERVS (Emergency Rider Volunteer Service) who support the Donor Milk Bank who assist with the collection and delivery. They are trying to build a network of bikers around Scotland to help with transportation of blood and other medical suppplies http://www.bloodbikes.org.uk/

Thank to everyone for reading this blog and for all the comments, the family find them very encouraging and helpful. We feel a huge strength from the support you are giving us particularly during this difficult week.
It was very hard for half of the family to be in Glasgow and the other half at home.

Thank you, all our love,
Richard, Suzy, Zach, Meghan, Maisie and of course Megan (she has had a great week with so many walks this from everyone looking after her - Thank you)

Strangely enough we're looking forward to going to Kirkcaldy tomorrow, we've missed our new friends there.

Maisie is recovering well

What a day, Mummy and Daddy were just finishing breakfast when they got the call to go to the hospital to sign consent forms - the operation was on, as they walked through the door into the hospital 3 minutes later the phone rang again - it was off, an emergency had just arrived. That was the start of the rollercoaster day.

Maisie was stable and didn't seem up nor down not having her operation, as the hospital chaplain said "Maisie is blissfully unaware"

We were told it may or may not happen later in the day, as you know it did just a few hours after the delay.

The closure of the duct was successful!

Maisie would like to thank every one for their support, thoughts and prayers - we passed every one on to her.

The surgeon went over all the risks with Mummy and Dady before they signed the consent which was not pleasant and just added to own worries but it was better to know and have all our questions answered. It was a very, very very long two hours.

So Maisies duct is now closed, this operation was needed for Maisies condition to start improving, the heart will now become stronger and pump more efficiently. The lungs will start to work more efficiently and hopefully the exchange of gases will improve. The heart will also start to take away some of the fluid that is in and around the lungs.

This is just the start of Maisies road to recovery, and was needed for her condition to be able to change, we need to continue to pray that Maisies lungs will start to operate more effectively to enable the rest of her body to start growing and functioning as it should and that she will soon be stable enough to go home (well to Kirkcaldy as that home for now)

We were sent a lovely prayer from a close friend via text this morning that we'd like to share with you;

God who knits us all together in our Mothers womb,

Please protect Maisie as she has left the womb prematurely.

Thank you for the medical care that is keeping her alive,

And for the Doctors, Nurses and Others who care for Maisie.

Help Maisie to Eat, Breathe and Grow, that she may join her family.

In your name, Amen

Operation over

Operation was successful. - Maisie is good and a little groggy.......more later

Maisie has just popped out to get an operation...

tomorrow is another day

So wee Maisie is still waiting for her operation......

The surgeons are very busy people and Maisies operation is not quite as important as some  required by other sick children. We don't want to mention anyone elses operations however we feel very fortunate to be in our position. Some of the babies are very sick. They are trying to find time to slot Maisie in between the big surgeries unfortunately they have been running behind today.

We are praying for the operation to be tomorrow and the Doctors on the ward are pushing for a confirmed slot.

Meanwhile Maisie is going from strength to strength while Mummy and Daddy are getting more and more tired. (think we'll have a lie in tomorrow). Maisies respiritory system seems to be getting better by the day and her swelling is down she's starting to look like a proper little lady. Steriods are a wonderful thing (at the moment).

Mummy and Daddy had a big suprise this evening - some one has stolen Maisies hat!

can you see the auburn tinge?

at Yorkhill Childrens Hospital

Maisie made it to Glasgow! What a lucky girl Maisie is, a bed became free and Mummy and Daddy are in Glasgow too. Maisie is staying in Yorkhill with  Mummy and Daddy just across the road in the Tiger room at Ronald MacDonald House.

The facilities at Ronald MacDonalds are great - lots of people are involved in the upkeep of this accommodation for parents. They are set up all over the UK and you can find out more at;  http://www.ronaldmcdonaldhouse.co.uk/

things seem a bit back to front in Glasgow?

Maisie is scheduled to have her operation tomorrow sometime during the afternoon. This a whole day earlier that expected, which is fantastic. It will take about 40 minutes to complete.
Maisie had a great trip to Glasgow and is now all settled,  her oxygen levels are good, as are the gases in her blood. The steriod treatment seems to be taking effect.

Maisie is also back on the old morphine which is meant to be calming her for tomorrow however she's back to being restless and fighting against anyone other than Mummy and Daddy who wants to touch her. This could be due to the fact that she is fasting ready for tomorrows operation and would rather be supping down Mummys milk.

The operation is to close Maisies PDA as all you avid readers of Maisies blog should know, however it may be interesting to know a little more about it;

A patent ductus arteriosus allows a portion of the oxygenated blood from the left heart to flow back to the lungs by flowing from the aorta (which has higher pressure) to the pulmonary artery. If this shunt is substantial, (which it is in Maisie) then the infant becomes short of breath: the additional fluid returning to the lungs increases lung pressure to the point that the neonate has greater difficulty inflating the lungs.

Not sure this helps you understand that much more but you can at least sound intelligent when you talk about Maisies operation. (I think Daddy may have done a little copy and pasting for the last paragraph)

Maisie knows all your prayers and thoughts are with her tomorrow - we'll let you all know how Maisie gets on as soon as we have news.

Taxi for Maisie!

how to comment

alot of people are asking how to post comments.

Click on comments for the blog you'd like to comment on, write your comment, from the "comment as"drop down box pick "name/url", fill in your name (no url needed)

this should hopefully work :)

A lovely family day out at the hospital

After standing in the cold all morning in Glenrothes watching/waiting on Zach to come an amazing 2nd in the 10k (a fantastic achievement - 35 mins exactly) Mummy, Daddy, Zach and Meghan spent the rest of the day with Maisie.

Sisters

The sunday papers were read, Maisie goes to (Glasgow) Hospital was read by Meghan along with other stories, jokes and  banter were shared by all. It was a lovely day spent together. Maise managed to open both eyes today and joined in the fun.

Today although not having a trip to Glasgow Maisie had a good day. Maisies oxygen supply level dropped again today and her swelling has greatly reduced. This is helped with the medication that Maisie has been receiving along with the steriod course that she has started.

Hopefully there will be more news tomorrow regarding Maisies trip to Glasgow and her operation.

Maisie with Great Grandpa Crokers wedding ring - this shows how wee she is

Glasgow update

Unfortunately Maisie will not be going through to Glasgow today, maybe another baby has  greater need for the bed. Let's hope tomorrow will free up another bed for Maisie.

we're off to Glasgow

It's late (after midnight) but just found out that Glasgow are all set for Maisie to arrive tomorrow - it's looking good for the operation to happen on Monday.

power of prayer

Wee Maisie has been having big wee wee's all day - thank you for your prayers and also to wee Catriona Byrnes "pee dance"  - it  all worked :)

Maisie loves her Aunty and Uncle visiting

Maisie enjoyed her visit from Nicola and Sarah yesterday and had more visitors today, Maisies big brother Zach came and read Maisie some stories.
Aunty Eleanor and Grand Uncle Carl visited again, very kindly leaving a present for Daddy which he's not allowed to open until his 40th on Friday, looks like it might be a nice bottle of whisky in the bag.
Dawn also came to visit with a gift from Alfie, Olivia and Harry of another Frog - and so wee Crokers frog collection starts.

It seems to be a time for gifts Maisie and Mummy had a lovely delivery of Orchids and a Teddy bear from Daddy's work - Thank you they are beautiful.

Mandy also sent a gift of a book, The Gruffalo which Maisie  loved very much, Daddy told Maisie that her cousins Charlie and Gracie also love this book.

Our little vampire Maisie is doing well after last nights blood tranfusion, the level of Oxygen that Maisie has been getting was reduce slightly today which means that her system is coping a little better and Maisie doesn't seem to be so swollen today either.

Things are looking good for her trip tomorrow, lets hope that she has a good nights rest so that she is in top form to travel to Glasgow. Details still have to be finalised but the Nurses seem confident that Maisie will be leaving Kirkcaldy tomorrow.

if only you knew how small Maisies new frog is!

Maisie please pee.....

The paediatric surgeon saw Maisie this morning, he said that Maisies lump is not behaving like an abscess   which is good. It's most likely a wee leakage of all the fluids that she is retaining at the moment. Maisie is starting on tablets (diuretics) to help reduce some swellings that she has around her neck, all her swelling is  linked to the cronic lung disease and Maisies PDA being open (hope you've all been paying attention and know what that stands for ).

All the swelling and fluid retention is a little worrying especially since she's not weeing, which means she is retaining even more fluid. Because of this Maisie had a scan to check that there was fluid in her bladder, there is - Maisie don't worry about your bladder control there's plenty time to learn that, we just need you to pee.

Maisie also had another blood transfusion today (more fluid - how does that work?) as her haemoglobin levels still seem low, this will help with the oxygen level in her blood and also help build her up so that she is in fine fettle for her operation.

Unfortunately Maisies lungs are not improving and the longer Maisie stays on the ventilator the worse they will become. We will not find out until Sunday when Maisie will go to Glasgow - what we do know is that it will be Sunday or Monday. Maisie is currently on high levels of Oxygen to help her however this may have adverse side effects.

So today what we need is for  you all to pray for pee.....

Pretty in Pink

This morning when we called the hospital to see how Maisies night had been the Nurse said that Maisie was pink and settled (at least that's what Daddy thought she said) .

Maisie all pretty in pink and settled



Maisie will be going to Glasgow in the next few days but the date is still to be confirmed. If she can go on Sunday then the operation will be Monday, if not then Maisie will travel on Monday and the operation should be on Wednesday. Currently these are the options available, we are waiting for a space and as soon as there is one Maisie will be on her way.

In the meantime we just need Maisie to continue to take Mummys milk and to rest so that she is good and strong for her journey  to Glasgow and her operation.

Today a wee lump was found on Maisies side, it could be an abscess from an infection that Maisie had (she's currently on a course of antibiotics)  or it could be just more fluid due to her being on her side for a wee bit too long. We'll find out tomorrow when Maisie does some more networking and meets a Paediatric Surgeon. Maisie has met alot of people during her short time with us - with this large network of contacts she's sure to do well in the future

Mummy was required to use her fantastic photography skills once more as it was Daddys turn to hold Maisie - as you can see from the amazing picture Daddy will also be taking the next turn to hold Maisie maybe with someone else holding the camera; could it be Mummy was a wee bit jealous :)

not a picture for the album

what a lovely day for Mummy

Today Mummy got to hold Maisie....after 19 days! Mummy was so happy!

a very careful Mummy

Maisie has had a good day on the whole, the Cardiologist decided that the pictures from yesterdays scan gave her enough information so no further scan was required today.

We are just waiting for a date for Maisies trip to Glasgow for her operation, we'll get an appointment as soon as there is a free bed.

Maisie also got a fresh new tube for her lungs today. The one that they took out was all blocked up with fluid from her lungs. This was a successful procedure performed excellently by the consulatant. It is a risk changing it, however Maisie should now be breathing better and have better circulation with better exchange of Oxygen and Carbon Dioxide.

Daddy got a bit grouchy with Mummy today. Whilst Daddy and Maise were hard at work completing the super fiendish su doku in The Times, Mummy raided Daddy's rucksack and broke into the bag of Jam Dounuts that Daddy was saving for a wee treat. Maisie made a mental note not to take Daddy's donuts with out asking.

Grandpa and Grandma Jan were the visiters today and came with gifts of an cuddley Eeyore and a Frog (our wee Crokers first) in the form of a cuddley green hand pupppet which plays (un)tuneful nursery rhymes which Daddy loves but the same can't be said for the Nurses.

Maisie and her annoyingly musical frog



the day after the good news....

Over night Maisies duct (or PDA as we are now calling it which stands for Patent Ductus Arteriosus - we're quickly picking up the lingo) re opened. The medicine did worked however while weaning Maisie off the ventilator the pressures changed and the duct opened up again.

The outcome of this is that she will need surgery to close the duct. Tomorrow a Heart specialist is coming to visit Maisie and she will then be booked into Yorkhill Hospital in Glasgow where they specialise in this type of operation. This operation in premature babies is quite rare but does have a very high success rate.

It is quite ironic that on the day of our Queens Silver Jubilee that we find out Maisie will be taking a trip to Glasgow to stay in the Queen Mothers Maternity Hospital.
There is no date set but as soon as it we'll let you know as we'll definitely need all your prayers that day.

Our Princess celebrating the Jubilee

Maisie also had another blood tranfusion today - 18ml of blood. It was blood group O negative which is the blood type most often used as this is the Universal Donor. Maisie needed a blood tranfusion because she had low haemoglobin which is needed to carry Oxygen around her body. Maisie needed blood as she is not really able to make her own like you or I and also because the Nurses keep taking it to do tests on!

This is really highlighting how important it is to be a Blood Donor and Give Blood. You can find out more about how to do this at the Scottish National Blood Tranfusion Service Give Blood website: http://www.scotblood.co.uk/ or alternatively at; http://blood.co.uk/ and find out where you can donate. I am sure that wherevcr you are in the world (I am aware that this blog is being read in over 16 counties already) you can find out where to donate.

The Good News for today is;
Firstly,  Maisie is still eating lots and lots of Mummys milk which is helping to grow big and strong for her operation. She has put on alot of weight and this morning the nurse informed us that Maisies nappy was exteremly full, that the mess was everywhere and the incubator was like the bottom of her pond.
Secondly, although this may be only good news to Daddy and the other chosen ones.......Maisie could be Ginger! More on this another time.

A good day

Today was a good day for Maisie, once more there was no one proding and poking her, the consultants and doctors left her alone.

Good News is that there appears to be no clinical sign of the duct (i.e. they can't hear it throught the stethoscope) which means the medicine worked. They are holding off on a scan to check this as it upsets Maisie and it is prefered that she is undisturbed at the moment.



At last Daddy gets a picture with him in


Maisies lungs however are still bad with the cronic lung disease and there currently seems to be no improvement. This is another reason to leave her just now to build up her strength.

Other signs show that the circulation to and from her lungs may be improving so fingers crossed that Maisie may have a another chance this week to breath without the tube from the ventilator.

More Good News is that Maisie has her appetite back and is guzzling down her Mummys milk using up some of the tankers of milk that have been delivered. This will give her the strength she needs and hopefully a spurt of growth, we could do with her being bigger than the size of Daddys hand.

are my parents idiots?

Mummy and Daddy decided to take some pictures at the Hosptial today - as you can see by this sample they didn't turn out to well. Can you belive that this was the best photo Daddy took of the 3 of us?

Maisie isn't even in the picture!

Thank you to Brian for bringing in more books for Maisie, we especially liked Slinky Malinkys Christmas Crackers! (Maisie is already trying to decide what she'd like for Christmas).

Lazy Sunday afternoon

As prescribed by the doctors  Maisie had a very restful and relaxing day doing nothing really other than sleeping. Sleeping time is good as this is growing time and we definitely need Maisie to grow.




"can Mummy and Daddy please leave me to sleep"

Maisies big brother Zach didn't have such a lazy day - he was running a 5k Chariots of Fire race at St Andrews this morning. Maisie and Meghan are so proud of their brother because he came first!
It is very good for Maisie to relax and have a lazy Sunday afternoon as she needs to recuperate after a very busy week.

Other than sleeping Maisie is also back on track with her feeding which is a relief as we thought we might need to buy a bigger fridge for all the milk Mummy is expressing.

Maisie needs to be big and strong for next week as there will be more scans to see how her heart and lungs are and maybe a brain scan which we think is to see how clever she will be.



Kind Cousins bringing more gifts - lucky Maise


Cousins from the MacMurchie clan (more family) came to visit today bearing gifts for Maisie. Maisie quite rudely but very surprisingly slept throughout the entire visit.

Mummy also got some nice smelly gifts and things from Lynne and Eleanor which she said will keep her looking beautiful.

Daddy didn't get anything and felt left out as usual (apparently he's past being beautiful) and so read Maisie her new book "Guess how much I love you?"

To the Moon......... and Back! 

June 2nd

Maisie has been given a sent a few playpals but they aren't allowed in to play yet as they are bigger than Maisie and might knock her over. They will just watch over her for the time being.

I'm sure Maisie is in there somewhere

A big Thank you to everyone for their gifts, Maisie can't wait to play with, wear or spend them. She initially wasn't to happy to receive a cheque this morning as she prefers cash. It was explained to her that having a cheque means that Mummy can't get her hands on it to spend on clothes so is now very thankful for the extremely kind gift.

Medication to reduce the size of the duct continues to be working without side effects and the last dose is today. There will be a scan on Monday to see if the treatment has been successful.

Today has been a restful day, there wasn't need for a sun bed (which means her jaundice is away for the moment) but Maisie was treated to a bed bath. Zach and Meghan came to visit and Meghan read her a bedtime story. It was a Good day!
Sunday is to be an equally restful day with no disturbances from the consultants to prepare her for the week ahead.

The highlight of the day was when Uncle Douglas and Aunty Margaret came to visit - Uncle Douglas gave Maisie a wee cuddle and she opened her eyes to let him know how much she loved it.

A proud Grand Uncle and Grand Aunty

1 June

Daddies Girl, Mummy went to work for a wee while today so Maisie spent alot of time with Daddy. Daddy read the paper and then changed Maisies nappy.
The nasty consultant came to do a scan on Maisies heart so she held on to Daddy's finger because he keeps her safe. The scan showed that the duct is almost closed and so Maisies heart is now beating stronger. There are two more doses of medicine to have today and tomorrow.
Maisies lungs arenot so good at the moment, chronic lung disease is taking its toll, the sooner she can get off the ventilator the better - if the duct will close fully this will help considerably. This shouldn't have a long term effect.
Mummy finished her visit with another story. I think Mummy likes Hairy Maclary.

R&S Z&M x



Daddy thinks I'm no bigger than a nice brown trout



Thu 31st May 2012

Maisies Day;

After a good night sleep Maisie had a great day, she was
joined in her room by twins, so she has some friends to play with, they're
a lot bigger than her but I'm sure she'll hold her own. :D

The blood transfusion went very well last night and a scan also showed that
the duct is narrowing which in turn is helping her wee heart pump better.
Maisie has had a lovely day finished off with Mummy reading the story Hairy
Maclary from Donaldsons Dairy, which apparently makes a nice change from
Daddies mad stories!

To all with love R&S Z&M x

Wed 30th May 2012

What Maisie did next;

A busy day for the wee one.
Maisie was back topping up her tan today under the UV light as she was a
little jaundice.
She was also back on the medicine to help close her duct, still no real
side effects from this which is positive. It is a longer course over 5
days.
Breathing is still a struggle and Maisie is on extra Oxygen today.
Also the iron levels in Maisies blood are low today, maybe because we keep
taking her blood out to do tests every hour or so. To resolve this she is
currently having a blood transfusion - just 17mls which seems such a small
amount when you consider the big bags we fill when we donate blood.
Thank you for all your thoughts and prayers. R&S Z&M x

Tue 29th May 2012

Laisie Maisie;

Well after 10 great hours breathing on her own
unfortunately Maisie is back on the ventilator, she is able to breathe on
her own however her wee lungs aren't clearing the carbon dioxide from her
blood.

She's had a scan and the duct is still there so she's starting her medicine
for another few days which will be monitored daily.
Maisie opened her eyes for the first time today and you guessed it the
first thing she saw was the most beautiful sight of her Daddy! How lucky
can Maisie be? Daddy did explain that the rest of the world might not be so
good to the eye :)

Daddy tried to take photo of Maisie with her eyes open but wasn't too
successful (note to self; even if you think you've turned the flash off
take a picture facing away from Maisie to test your camera skills before
pointing said camera at Maisie who's just opened her eyes)
Meghan and Zach visited again, Maisie took one look at Zach and hasn't
opened her eyes since. :D

It has been a restful day today which is good. R&S Z&M x

Has Daddy turned off the flash?

Mon 28th May 2012

My aMazing Maisie;

Day 10 and Maisie made progress today firstly
by managing not to attach the velcro from her arms to the velcro on her
bonnet (it was becoming a regular occurrence which is quite funny to see).
Secondly her ventilation tube was leaking (probably due to Maisie being so
active) so instead of replacing it the fantastic Nurses tried to see if
she could breathe on her own (with reduced support but more oxygen) - which
she has now been doing for 4.5hours - Major Progress!


Maisie breathing on her own - with Oxygen


Don't get too excited though as it's really hard work for wee Maisie and
currently all other treatment is on hold as being able to breathe on her own
will benefit her the most. She's back a drip instead of Mummy’s milk as not
having a big belly will help her breath better.
However Maisie did get a wee dose of Caffeine as it helps to stimulate the
part of her brain used for breathing! R&S Z&M X

Sun 27th May 2012

Lazy Maisie; what a beautiful day to be lazing about doing
nothing. Maisie has spent the day rather peacefully recuperating after the
last few eventful days and hopefully after a wee bit of rest she'll start
make more progress.

The medication for the duct partially worked so she will need to have
another series of treatments this week, a positive is that there were not
really any side effects.

Tomorrow she should be strong enough to have a scan of her heart to see how
much the medication has taken effect and also as she's back on Mummy's milk
she'll be back to having a full tummy.

Zach and Meghan spent the afternoon with Maisie and gave the Nurses a
grilling to find out what's what - ensuring that their wee sister was
getting looked after.

Grand (Great) Aunty Eleanor and Grand(?) Old Uncle Carl visited and left
Maisie an lovely tuneful bunny and a pretty soft blanket - thank you x. R&S
Z&M x

Sat 26th May 2012

Maisie was a little bit naughty today...
She pulled her ventilator tube out! It was a little clogged up so she
probably wanted a nice clean new one. The nurses have now put a glove on
her left hand to try and stop her pulling at all the wires and tubes
holding her down, does this mean she might be left handed like her Daddy?

Maisie cannot pull out tubes now!

After all the energy used this morning destroying her equipment Maisie has
spent the afternoon quite peacefully resting, conserving her energy for
another day.
The medicine seems to continue to work and the last dose is this evening,
although Maisie still insists that she doesn't need to breathe on her own.
R&S, Z&M X

P.S Mummy had a good sleep in the chair by the incubator this afternoon
while apparently keeping a close eye on Maisie