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.