Friday, December 5, 2008

Happy First Birthday, Precious Boy ( 5th Dec)

A very special Happy Birthday Mitchell. Celebrate in style (with ducky of course). We always remember and miss you. Love from Mummy and Daddy

The first day that we met you,
was only a year ago today
In such a rush to meet the world
You chose your own birthday

We had to wait an entire month
to hold you in our arms
But having life with you
was not without it's charms

Your cheeky grin, engaging eyes
and love for everyone
made life so full of joy and hope
you were brighter than the sun

You and your ducky
were never far apart
we keep a few around us now
to remind us of your start

For seven months you fought
to let us take you home
It was hard to watch at times
but you never seemed to groan

We hope that you are happy,
Playing in the sky above
We miss you each and every day
So, Happy Birthday Son, with love

Wednesday, July 9, 2008

Mitchell's Last Blog ( as read at his funeral )

Hi All,

What a journey my life turned out to be. I am sorry that I have had to leave you all but I am told that I am needed for another purpose (its secret squirrel stuff I’m not allowed to talk about). It seems that my work here is done.

Over the past few months many of you would have followed my many adventures and mishaps on this blog and through my beloved family. I hope that I have served as an inspiration to you as well as given you a smile from time to time. And while I didn’t get to meet a lot of you, I appreciate that there were always so many people who thought about, loved, prayed and sent positive vibes to me. I felt them all and they helped me to battle on for as long as I possibly could.

For those that I did get to meet, thank you. I always loved to have visitors and was always a bit sad when Mummy and Daddy told me that I was asleep when someone came in to see me. But at least you didn’t see me when I was grumpy. Apparently I’m not so lovely then. I’m sure that if I had gone home straight after birth like a lot of babies do, I wouldn’t have met anywhere near as many special people. I was never alone and always had lots of company. I meet some other very special babies and their parents while in the neonatal unit. Making mischief with bells and alarms with the other babes so that the nurses would have to run between us was always the most fun. None of them I will forget and I will visit them from time to time to see what they are up to.

Speaking of nurses, where are my blue pyjamas? I’m pretty sure that I was promised a pair of my own. Never mind, I thank you all for looking after me with such passion on both the good days and the bad. I know that on some days I certainly made you work for your money. And to all the doctors, specialists and everyone else at the neonatal unit I thank you. You were my home. I am sure that without all of your good work I would never have made it past week one. I know that you were all rooting for me (if only secretly) till the very end.

I learnt a lot in my seven months of life. I learnt about some key things that make up life. I learnt about how great family and friends are, especially when they bring you presents and tell you stories. I learnt about love and how wonderful it feels to be loved so I always looked forward to 5:30 everyday when Mummy brings Daddy in to see me and they give me warm cuddles and baths. I learnt about happiness and whether that is in the form of a little rubber duck we call ducky holding in your dummy or having your tummy filled with milk on time doesn’t matter, it all feels great. I learnt that it is ok to take lollies from strangers as long as they are wearing blue scrubs and say that it is called sucrose. I learnt that hiding things is great fun, I know that daddy thinks I am still hiding stuff even now. I also learnt that Mummy’s and Daddy’s are the best people in the world.

I hope that from the things that I have learnt you will all be reminded of those great and simple things in your lives that makes life great, and have a little bit of appreciation for them amongst all the noise that is everything else.

While I don’t hope to see any of you again soon for obvious reasons, I do hope to see you all again one day and that you will always remember me. I have a place marker in the sky, but I bet you can’t guess which one!

With Love From,


A Note From Mummy & Daddy:

Firstly, apologies for putting up the incorrect street address of 175 adelaide road instead of 375. I hope that everyone found the venue ok.

Secondly, thank you to everyone that has sent through comments on here, cards to us and donations to the neonatal trust. We have read them all and sincerely appreciate them.

Thirdly, thank you to everyone that attended Mitchell's service today. Having so many special people there made the day even more fantastic.

Thank You all, you are all in our hearts.

Glenn & Tamar

Friday, July 4, 2008

Rest In Peace, Dear Mitchell

Mitchell Dylan Jasper Brinfield
5th December 2007 - 4th July 2008

Mitchell passed away at 12:01am on Friday the 4th of july very peacefully in his Mummy's arms. He had fought a very long and courageous battle with his chronic lung disease that in the end he just could not win.

A service will be held for Mitchell On Wednesday the 9th of July at 1pm. It will be held at the Wilson's Funeral Home at 175 Adelaide Road, Newtown, Wellington

Please do Not be offended, but we ask that no flowers are sent because of allergies. If you would like to, a donation to the neonatal trust would be fantastic.

With Thanks,
Glenn, Tamar & Family

Tuesday, July 1, 2008

A bump in the road

Hi All,

I'm sorry for the delay in writing to you. I seem to have hit another bump in the road. I really must get someone to repave it for me.

Last week my oxygen requirement started to increase and on Friday I went from bad to worse. Over the space of a couple of hours I found it increasingly hard to breathe and was gasping for air. This meant that I had to go back onto the ventilator so that I could have a bit of a rest. I am still on it and the current plan is to give me another go back on CPAP on Thursday. In the meantime I am trying to speed up the process by demonstrating how easy it is to remove the tube, I can do it in a couple of seconds so I don't know why they have to wait till thursday.

Mummy reckons that it all happened because I was Jealous. A few of the nurses from the unit were going out to stay at my beach house on the friday night. That meant that they got to stay at it before I do. How rude. But I hear that they had a good time and enjoyed themselves so that is nice. Apparently it is a lovely place for a holiday and even warm in the winter time with great views of the ocean. I can't wait till I can stay there, I will get to go out there eventually I'm sure!

I am now over 200 days old and weigh 4.8kgs. Well that was my weight a week ago so who knows! I might have made it over 5kgs by now! I have been given some of my medicines in a teat so that I can suck on it. Boy, its heavenly to have nice stuff in my mouth. Mummy says it smells like oranges. But I am just always looking for more. 10 drops isn't nearly enough. I might get to try some other stuff soon but we will have to wait and see.

Mummy is busy sorting out a whole heap of photos to make an album on the web. Yes we know, you all only look on here to see my gorgeous photos.... so more photos are on the menu. Mummy and Daddy always seem to have their camera's in my face. Even Grandad is in on the act with his big flash jobbie. The ones that we have put on here today are from a group of photos that the hospital photographer took for us.

With Love From

Thursday, June 19, 2008

Some Sort of Normality ( 19th June)

Hi All,

My daddy went back to work this week. He has been spending the last few weeks with me and it has been very cool. We talk about boys stuff. Well, Daddy talks and I listen... most of the time. I have started finding my voice a bit this week and have been using it to make lots of interesting noises. I invent a new one every day and when Daddy comes in at night I illustrate todays noise. I do miss seeing Daddy during the day but it does give me something to look forward to at the end of the day.

With Daddy going back to work it means that Mummy and I are getting back into our old routines which are ok. We have started reading the Magic Faraway Tree. It is a great story and has nice pictures. I have already tried to rip one of the pages out to see if it tastes as good as it looks but Mummy was too quick and spied my plan. She says that the book is pretty old cos she got it when she was a kid so I have to be careful with it, but where's the fun in that?

I am also having great fun in removing my nose prongs. This columbian CPAP makes it much easier for me to do it. Its a great game, because if I do it when no one is looking, the alarms go off and people have to come and see what is wrong. All I have to do is either twist my head a certain way or reach up and pull them out of my nose. I have scratched my nose a few times doing it that way even though Mummy cuts my fingernails about once a week. It does sting a bit. But people are catching on and some nurses tape them to my face. I think thats cheating.

I have seen the neurodevelopment therapist ( what a mouthful!) this week to see where I am at with my milestones and developing my motor skills. I am doing very well. I am doing pretty much everything I should be and there are even some things that I am ahead of schedule on! She has given Mummy and Daddy some ideas on what they should be doing with me so it will be interesting to see what surprises are around the corner. She also made mention of bringing me some new toys.....=0)

I have been pretty well health wise, with just one hiccup where I have started spilling (being sick) after some of my feeds. In one Day I was sick on one of the nurses from 1m away (yes I am proud of that one), All over my mum and then aimed for my aunty ( and missed ). I have never really done it before so they have changed me back to feeding every 3 hours instead of every 4 so that there is less going into my tummy.

With Love From

Wednesday, June 11, 2008

Bye Hector! Bye Nana Joan!( 11 June)

Hi All,

Well my good friend Hector went home yesterday! It was so exciting for him to finally be going home after 7 months! Yay for Hector! It was sad for Mummy to say goodbye though as she will miss him and his family terribly, but she knows that soon enough it will be my time to go home and enjoy the world. Good luck Hector! And his family of course....=0). Joss has also gone home again so hopefully he will stay healthy and stay there!

I have started seeing the dietician again as my weight gain has slowed down. I still seem ginormous to anyone who saw me when I was really little as I now weigh 4.3kgs in comparison to my starting weight of 715 grams! But I still should be a lot bigger than I am. I grown in length too. I am now 54 cms long where as I was 31cms when I was born.

But the biggest change was today! The neonatal staff paid a visit to the paediatric unit to dig out a different set up for the bubble flow CPAP. It is a system that they used to use, but decided that the snorkel was easier for them. Anyway, I was getting pretty cross eyed, having been on the snorkel for so long, so they have set me up with this other (old) one and now I can see better and people can see my face better. Although I still keep going cross eyed still because I keep looking for the snorkel! I was pretty happy this afternoon because of it. Lots of smiling and being awake playing. Everything looks so different without the snorkel in the way. It is only for a trial to see if It works well for me. Hopefully it does. And I have already figured out how to pull it out of my nose when nobody is looking!!....=0)

My Nana Joan went home today. She has been visiting me for the past three weeks and it has been great to see her. Love you and miss you !

With Love From

Thursday, June 5, 2008

Happy Birthday to ME! ( 5 June )

Hi All,

Today is my 1/2 year birthday. I am six months old today! Mummy and Daddy decided that because I have had a rough time recently, I deserved to have a good celebration. I had a great bath last night so that I might get some good sleep in preparation for a big day. But I was so excited that I woke up at 5am waiting for Mummy and Daddy to come in. I had a good play with the night nurse ( who I think had as much fun as me ) and then had another nap and woke up just as Mummy and Daddy got there. They made such a fuss of me that I couldn't stop smiling. They bought me in a smiley face helium balloon but I wasn't sure what to make of it at first, but he and I have come to terms now. Mummy also bought in a birthday cake, some brownies and some rum balls so that everyone could be part of the celebration. She stayed up really late last night making them, but I think thats because she wasn't very organised...=0). But everyone liked them and put them in a good mood. Especially the rum balls. I didn't get to have any of the food but I did get to have some milk from a syringe a bit later in the day which I always love, but haven't had in a while ( my milk normally goes straight into my tummy). I also had two cuddles today. One with Daddy and one with Nana Joan. So I had a very full day.

Oh, and in celebration of the day I started giggling. Only daddy heard it, so Mummy is eagerly awaiting for me to do it again.

Some other good news is that all the test results came back from the states and they were all negative. And that is a good thing because if I had one of these strains of surfactant deficiency
there is no treatment or cure, which would really suck. But at least there would have been a reason as to why my chronic lung disease is so bad. Oh well, you can't know everything can you?

Happy belated Birthday Greer! She was born two days before I was and from what I hear she and her family went fishing on her birthday which sounds like fun. But she didn't get a cake where as I did.

With Love from,


Friday, May 30, 2008

Back In business (30th May)

Hi All,

IM BACK! See, you can't keep me away for too long.

Its been long and difficult couple of weeks. It is always pretty serious when a baby of my age has to go back on the ventilator after being on CPAP for so long. I had pneumonia and a partial lung collapse and that on top of my chronic lung disease was enough to put me in a critical condition. In fact the doctors weren't very positive that I would recover from this set back. But of course, I proved them wrong and I am back on the way up again.

It took 2 attempts over 10 days for me to get off the ventilator and I have been off now since Wednesday and doing incredibly well. Except my days and nights are a little confused. I am awake ALL night at the moment and then sleep all day when people come to visit me. Some would say that I am doing it on purpose because I am sick of all the visitors, but I swear I'm not! The other rumour is that I have a crush on the night nurse that I have at the moment and want to stay awake all night with her. She is lovely but she isn't the reason either. I'm not sure why it keeps working out that way. At least I'm not grizzly when I am awake.

My nana Joan came all the way from australia to tell me to get better. And Grandad and Nan came back from their trip a bit early too. I figured if all these ( and heaps more) care about me so much , I better do my best to get better. And it worked.

My good friend Joss has had a hard time with Bronchitis over the last couple of weeks and is back in hospital so we send all our best wishes and healing thoughts to you too!

With Love from

A note from Mummy and Daddy:
Hi, Just a quick note to say a big thank you to all the people who phoned, text, emailed and visited Mitchell over the past couple of weeks. All your prayers, kind and positive thoughts to help us and Mitchell get through this time are all greatly appreciated. As you can imagine Mitchell has a long road ahead of him and his current progress is a "drop in the ocean" as it were, so please do continue to pray and think of him.

With Thanks,
Glenn & Tamar

Monday, May 19, 2008

A Message from Mummy and Daddy

Just a quick note to let you know that we ( and Mitchell ) won't be updating the blog for a little while. Mitchell has had a bad week with pneumonia and has had to be put back on the ventilator. At the moment we are waiting to see how he responds to this treatment. Please continue to pray for our little man, as you will know from this blog he has had his ups and downs and can quickly go from one extreme to the other.

We are spending a lot of time at the hospital, so cellphones are the best way to contact ( leave a message) if you want to get a hold of us.

We know that some people are thinking of sending flowers, but because of allergies, please don't be offended that we ask that you don't. And chocolates work better anyway! ...=0)


Glenn & Tamar

Monday, May 12, 2008

Hot, Hot, Hot! ( 12th may )

Hi All,

Well I have had another interesting week. Most of it was fine and dandy but on Friday I had a temperature of 39.7 degrees, so the dr's have put an IV line in my arm ( which I felt obliged to pull out on sunday so they put a new one in my leg) and started me on a course of antibugs (antibiotics). They have sent off all the obligatory blood tests and cultures, but I am sure like all the other times, they will come back with nothing. They did do an X-ray of my lungs on friday night and found that a small part had collapsed on the upper right lung, but this could be because I have been favouring lying on that side recently! As you can probably tell, this is all pretty normal for me. But the Doctors have to do their jobs and treat all temperatures etc as serious.

Mummy is over her throat thingy which means no more funny mask. It was Mummy's day on Sunday and we got to have a cuddle after not having one all week. It was really nice. Apparently I made her a card but I don't remember doing it. And the foot prints on it are way too big to be mine, so I think that the nurses probably made it for me. But its pretty cool that they did. Mummy loved it. And the bootees ( that are for me, but are too big) and the smellies. Daddy also made her breakfast and Dinner and bought her a present so she was pretty spoilt for her first Mother's day. Hmm, means there is a lot for me to live up to for next year!

Joss got to go home! Yay for Joss! I am a bit jealous, but I hope that everything is going fantastically for them. I am sure that it will be.

It is my Aunty Melza Moo's birthday tomorrow. She is coming to see me and if all goes according to plan, then I might have a cuddle with her. Thats pretty exciting. I like having cuddles with new people. I hope that I am awake when she comes to visit!

With love from

Wednesday, May 7, 2008

5 Months on (7th may)

Hi All,

On monday I had another birthday, I was five months old. And today I am 22 weeks old. That means that I am 154 days old. And the doctors say that I am 48 + 1 ( 48 weeks + 1 day gestation) or 8 weeks corrected. Isn't it amazing that there are so many ways of measuring how old I am?

I have had a good week this week and the steroids are now only being given when my oxygen gets back over 80%, which means that I haven't had any since last friday which is pretty good. I have had a couple of grumpy days, but overall I have been pretty good. My blood got sent off to the states on thursday, but apparently it will take 4 weeks for the results to come back which is a bit stink. Oh well, I am going to be here anyway!

Mummy has a nasty sore throat at the moment so didn't come and see me today. She came in yesterday when it wasn't too bad but had to wear one of those face masks. She looked really funny and made me smile a lot. It meant that Mummy finally caught one of my big grins on camera! Infact the photos kind of make me look like I am laughing but I'm not yet, I am still working on that one. Yia-Yia (grandmother) came to visit me today because Mummy couldn't. I had a cuddle with her when she come to see me at the weekend, but today we just played with my toys. She even got a few smiles out of me, which made her day. Daddy came to see me by himself tonight too, which I always love. It's always nice to talk about boys stuff.

Joss is back to visit me briefly. And he is in the spot across from me which is cool! He had a hernia op today ( the same as I had ). And it all went well, so with all going according to plan, he should be able to go home tomorrow! Eva went up to Palmerston north hospital on Monday which is where her family is from. That is a big step for her and means that she is on the right track for going home too which is great. She bought me an awesome present ( well her mummy did ) to say goodbye. It is a Moose that has bells and crinkly things in its feet and has a lovely red and white scarf. I love looking at him, he makes me smile. I do kind of feel though that all my friends are leaving me.... but I guess it just means that I have to make new ones!

With love from

Monday, April 28, 2008

On the up... (28th April)

Hi All,

I have had a really good week. I have been having steroids every second day and that means that I am not working as hard to breathe, which makes me a lot calmer too. I have been awake a lot, but not really grumpy. I like to look around at the room and play with my activity gym. I have been doing that a lot recently. Mummy and Daddy have said that I have big black eyes from not getting enough sleep, so last night I slept most of the night which made them happy and apparently today my eyes looked a lot better.

There have been a lot of comings and goings in the neonatal unit this week. The whole place has been very hectic. I am lucky that I got to stay where I am! My friend Hector left to go to the paediatric ward on thursday. It was kind of sad, but he gave me a wave as he was wheeled past - he looked kind of excited to have all these interesting things to look at on the way! Apparently he has a nice room that over looks the children's playground. Mummy said that she will go and visit and say hello for me. One of my other baby friends Joss, got moved out to Hutt hospital this week. He is really close to going home so that is really exciting. I hope that it all goes well for him and his family, but I will miss him!

I am having some blood taken tonight so that it can be sent to the USA for surfactant testing. They have to take 10 mls, which is heaps from little old me! It is so much that they might have to take it from an artery via an arterial line, and then I might have to have a blood top up, so that they can replace what they took! Its a good thing that I am used to all of this stuff. It is quite exciting to think that part of me is going to be off travelling the world, even though I will be staying here. I wonder if they can hook a camera up to the parcel so that I can see where it goes? hmmmm....

As you can see from my photos, when I do sleep, I sleep in interesting postions! Mummy and Daddy are still trying hard to capture one of my big cheesy grins on camera, but I am having great fun in only smiling when they put the camera away. Mummy did get one this week, but the photo is kind of blurry.

With Love from

Saturday, April 19, 2008

Testing, Testing 1, 2, 3

Hi All,
Well after my post on sunday it turns out I wasn't as well as one might have thought. I continued to use 100% oxygen and work really hard when breathing for the next couple of days which was of a concern to the dr's so they gave me some steroids and a blood top up. I am pleased to report that it has helped greatly and my oxygen is down again now.

This little unwell period made the Dr's start to think about how there might be something else that is slowing down the growth of my lungs. The fact that I am now putting on a good amount of weight means that my lungs should be starting to get better, but they still seem to be a little slow in their development. Mummy and Daddy were called in to talk to the consultant on Tuesday and to talk about what they are going to look at. One of the things was that they wanted to do a gastric probe to see if I had large amounts of reflux. It meant that they put a second tube down my throat and it sat there for 24 hrs and was connected to a machine that measured the PH level in my esophagus. The report came back and I didn't have large amounts of reflux, so that is one thing to cross off the list.

Another thing that they talked about is surfactant. Apparently that is something that your lungs makes that is a bit like a lubricant. Our consultant has a gut feeling that I might not be making one of the proteins that makes up the surfactant. The only testing that there is for that is in the USA! So He was talking to starship hospital to try and arrange the testing to be done. At first it was thought that I might have to go to starship hospital to have the tests done, but we soon found out that I could stay here, and they could just send blood samples to the US. (Mummy was relieved not to have to go to auckland with me, although I was secretly looking forward to going on a plane!) As you can imagine there is a bit of paperwork involved with sending blood overseas, so hopefully we will get that done this week. The only bummer is that the results can take weeks to come back!

The Doctors have really decided to test me for lots of stuff. "they are ticking all the boxes" if you like. They are also looking at the family medical histories for clues. I don' t know if I want them to find something or not. I guess if they do find something and it is easily treatable it will speed my recovery up which will be a good thing.

So as you can imagine my week has been pretty busy and a bit topsy turvy. It means that I have been out of kilter with my sleeping and been getting grumpy again. I had a great day today though. I was awake and waiting for Mummy when she came in today. I had been awake playing with my toys for about 3 hours by then and then we had a really nice long cuddle. I fell asleep pretty quickly and then Mummy felt bad when after 3 hours she had to put me back to bed. Like most people I don't like being woken up, but I settled pretty quickly and went back to sleep.

With Love From

Sunday, April 13, 2008

Look at Me! ( 13th April )

Hi Everyone,
I got a new bed! Its GINORMOROUS! Its a cot from the pediatric children's ward, and I look really tiny in it, but it holds me and all my toys. My friend Hector has one too. His is red and mine is silver. We are the two big boys of the ward. I heard the nurses saying that Hector might be moving over to the children's ward this week! Stink! Now who will I party and stay up all night with? He will stay there until he goes home, which hopefully won't be too much longer. Apparently I might go over there before I go home too, but we will have to wait and see what happens.

I didn't have a very good night last night (Sat 12th). I had been grumpy and upset all day. Even after a nice bath and Cuddle with Daddy I was still grumpy. Then my temperature got really high (40 deg!) and it became really hard to breathe. The nurses were thinking about putting me back on the ventilator and that wouldn't have been cool at all! They put me on some antibiotics and medicine and then gave me a blood top up. I started to feel much better after that. But it was a busy night with all the monitoring and xray's and stuff to make sure that little old me was ok. One of the horrible things was that they stopped my food, which of course made me more grumpy. I really like my food and I always know when it's dinner time. At least they restarted it again today.

I was really tired after all the fuss, so I have had quite a bit of sleep today. I woke up when Mummy came to visit me and was grumpy at first, but I felt better once I got turned over and Mummy started reading to me. We are reading the Wizard of Oz at the moment. Dorothy and her dog got picked up in their house by a tornado! And when they landed they squished a wicked witch. And now she is a hero. But she wants to go home so she is going to find the wizard of oz to see if he can help her. On her way to oz she has met a scarecrow with no brains, and a tin man with no heart. I wonder who else she will meet on the way?

Mummy also gave me a massage with lavender today and got out my activity gym for me to play with. I played with it for over 2 hours! I love looking at it and batting the objects so that they move. So as you might have guessed I am feeling much better today. Pretty much back to my old self.

With Love From ,

Wednesday, April 9, 2008

Almost there (9th April)

Hi All,

Well I am getting really big now. I am just under 3kgs now! I will reach it in the next day or so I reckon. Mummy sighed with some relief today as it looks like I am finally starting to get taller. I was getting very fat and she had been waiting for me to start growing up so that I stretch out some of the fat. I was starting to look a bit like buddah and she would rub my tummy for luck!
It did sort of work, they won a few dollars in lotto, but the $19 million was won in New plymouth!

Mummy went and bought a big box of nappies on special the other day, and now she is wondering if she should have bought the next size up! Her and Daddy think that I am going to be huge by the time I go home. Still no idea on when that might be, I have 3 definite goals to meet before I go home. The first is to get permanently onto the Wellington CPAP, then I have to graduate onto the low flow oxygen and then once on that I can start breastfeeding. I am allowed to go home on the low flow oxygen and will have my very own divers tanks to take home with me. Daddy hopes that they might throw in one of the big Nitric oxide ones so we can make the car go faster!

Until today I have been spending about 4 hours a day on the wellington CPAP which has been so fantastic. I try and stay awake for that whole time because everything looks so much better without the snorkel in the way. And I am a lot calmer. But it is very tiring for me. Its also heaps easier for Mummy and daddy to have cuddles and bath me so they really enjoy it too. But the last couple of days I have had to work really hard while being on it, so I have to give my lungs a bit of a rest for a few days before we get going on it again. Unfortunately my baby friend Eva has had a couple of set backs too, so I hope that she feels better soon too.

Happy Birthday for last sunday Uncle Giles! Sorry I wasn't there, but when are you coming back to see me? .....=0)

With Love from

Tuesday, April 1, 2008

2 for wellington Please ( 1st April )

Hi All,

Big news! I am now being trialled on the wellington CPAP! I am not the only one either. My baby friend Eva and I are having a race to see who stays on it permanently first. I don't want to be the last long term baby to have moved onto it!

It is SOO much better than the snorkel. I can see so much more now with out that thing in the way and people can now see my face better too. I also don't have to wear the helmet thing whcih is great, because it was rubbing on my shoulders and making them sore. Every six hours I am changed from wellington to snorkel to get me used to wellington. Hopefully it won't be too much longer before I am on it all the time!

I panicked a little when I went on it at first, but I soon worked out that I was ok. It is great for having cuddles with. It means that Mummy and Daddy can pick me up much more easily and don't need so much help with all the hoses from the nurses. Yesterday soon after I first went onto it, I realised that it meant that ANYONE might now pick me up and give me a cuddle. So I stayed awake for ages begging for attention from the nurses. They got the better of me in the end and gave me a bath. That made me tired so I went to sleep about 1am.

Infact, I have been alot more aake in general recently. And not just grumpy awake either. I can quite often be found lying in my cot quietly looking around or smiling at my ducky and pictures. I have great big smiles now. Mummy and Daddy have yet to capture a really big one on camera, they still only get my little cheeky ones. I do surprise some of my nurses with them too. They don't get too many babie's in the unit that get old enough to do big smiles so it always brightens their days too. I had one nurse, who when it was time to hand over at the end of her shift, only wanted to talk about the lovely big smile I had given her. It was kind of funny.

With Love from,

PS, as you can see from the photo, it was linen day at the unit, thats why I got stuck with a pink and purple blanket. Apparently it makes me metrosexual, what ever that means!

Sunday, March 30, 2008

Vaccinations ( 30 march )

Hi All,

Life here in the neonatal unit was getting a little boring so a couple of the nurses decided to decorate my area. They hung pictures from the ceiling from string so that they move and are good to look at, and put other pictures on my wall. They say it was for my benefit, but I think that they were just having a slow night. Thanks Lisa!

My weight is going up in leaps and bounds. I now weigh 2.5kgs! Thats 5.5 lbs, so the size of a small new born baby. Everyone keeps talking about how big I am getting. Even Mummy and Daddy. They notice it especially when having cuddles as I am a lot bigger to hold! I think that the dr's still think that I have poor growth, so I am not sure how big I have to get to be considered growing well!

On Friday Night I had my first lot of vaccinations. I was supposed to have them when I was six weeks old, but I haven't been considered well enough to cope with them until now. Mummy stayed with me and patted and talked to me while nurse Jackie did them. Everyone was so amazed at how well I did with them. I just lay there quietly watching all the goings on while they did them. I personally didn't see what all the fuss was about. It was about the same as when they put an IV line in or take a blood test so I am well used to them. But Mummy and Daddy told me how proud of me they were so that was nice. As you might have guessed, I am a few months behind in my shots, so I have to have my 3 month ones in a few weeks. Oh well, thats life.

I'm not allowed in the hammock anymore...=0(. It was decided that because I don't lie flat in it, I might easily block my airway in it so it's not particularly safe. Oh well, it was nice while it lasted. At least I can still go in the bouncy chair though.

I got a lovely present this week too. It was from my baby friend Greer and her family. It is a blue polar fleece blanket. It has a helicopter and my name on it. How cool is that? And some of my friends here in the unit got one too. We all have different pictures ( and of course different names!). They are pretty special. And good luck Greer with graduating off the oxygen this week, that sounds like awesome news! But I am gaining on you weight wise so you better watch out! ....=0)

With Love from

Monday, March 24, 2008

Happy Easter! ( 24th march )

Hi All!

Happy Easter Everyone! Mummy and Daddy have been telling me all about easter and the easter bunny and hot cross buns and easter eggs! I can't wait till next year when I will be big enough to try these things. Mummy said that she ate plenty of both so I can probably taste it in my milk. I haven't noticed any difference but I guess it was a good excuse for Mummy!

I have had a pretty good week this week. Although I have been grumpy a lot of the time. Me being grumpy is part of having chronic lung disease. That makes it hard for me to breathe and grumpiness is also a side effect of having steroids to help my lungs to grow. Did you know that a child's lungs keep growing until they are 7 years old? This is good news for me. It means that all the naughty parts of my lungs that don't work properly can heal, where as with an adult it is a lot less likely that their lungs would heal if they had lung disease.

After my laser eye surgery on Tuesday I was pretty good although I didn't like being on the ventilator and tried to pull it out a few times. So on Wednesday evening they put me back on the mid line bubbleflow CPAP (snorkel) and I was much happier. My oxygen dependency has been pretty stable since then anywhere between 45 - 55% which is pretty good for me.

One night this week I was so distraught that I probably only had an hours or so sleep between 11pm and 2pm the next day. The doctor ended up prescribing me a new anti-grumpy drug that helped me to get some sleep. I have only had it that once, but it is there if I need it again.

The next night I was given a nice warm bath and that helped me to relax and get some sleep too. That worked well and I slept for a good few hours. And then the next day, the maternity ward lent me a baby hammock to try sleeping it. It was really comfy and I could be bounced and rocked easily. I have been in it a fair bit, but it does take up a lot of room.

Mummy and Daddy gave me another bath and a cuddle yesterday that was just bliss. I wish I could have that everyday. I think that then I would sleep well every night! But I guess if I had it every night then it wouldn't be as special.

Enjoy your easter!

With love from,

Tuesday, March 18, 2008

Lightsaber laser surgery ( 18th March )

Hi All,

Well I ended up having the laser eye surgery today (tuesday) instead of yesterday (monday) because the surgeon wasn't around yesterday. But it all went really well and was a lot quicker than anticipated too. I am on the ventilator at the moment, and the nurses have taped it down really well because I keep trying to pull it out. Hopefully I should come off the ventilator tomorrow and back onto the snorkel. They will also wean me off the morphine.

Sunday was a good day too. I had visitors. My Nana ( said Nah-nah, like banana ) my great aunty and my yia-yia (grandmother) all came to visit me. It meant that there were 4 generations in the same room. Nana had a great privilege too, she became the first person other than my mummy and daddy to have a cuddle with me. And it was great! The only drama was when I managed to get my snorkel prongs out of my nose and started sucking on them. That has become my new trick. I have done it a few times over the last few days and the nurses have noticed that when I do it, I cope quite well so they are thinking that it might be time to trial me on the next level of CPAP which is really exciting. We have to wait and see what happens once I am off the ventilator though.

Mummy also told me a funny story about when she went to take my visitors home on sunday. She asked them to meet her at the car while she got her parking card stamped and they all got lost! It took 20 minutes for them to find the car and for mummy to find them. It made mummy and me laugh and remind mummy of the old song... "Oh dear, what could the matter be? Three old ladies got locked in the lavatory......" but at least they all eventually met up.

Oh and I almost forgot! Some of my biggest news ( excuse the pun ), I now weigh over 2 Kgs! I have finally broken that barrier! Yippee for me! I may lose some weight over the next couple of days because of not eating after the surgery, but still, I made it!

With Love from

Sunday, March 16, 2008

100 Days old! ( 15th March )

Hi All!

I had a really exciting day today. I am now 100 days old!

I have been quite grumpy the past couple of days ( I have had some more steroids to help my lungs ) and everyone went to great measures today to cheer me up, and guess what, it worked!

I haven't been sleeping much, which means I am a bit over tired too. So while I was awake this morning the nurses got me up and put me in the bouncer. I really like the bouncer and being able to see so much more. But with the nurses bouncing and rocking me i soon fell asleep, which was kind of nice.

Later that afternoon, Mummy and Daddy came in and they gave me bath! First they got me undressed and took all of my leads off. They also put a towel under me. Then Mummy lathered up her hands with some lovely smelling stuff and rubbed me all over making me all slippery and bubbly. It was nice, like a massage. Then I got to go in the water. They eased me into it and it was lovely and warm. Although I didn't like it much when Mummy let go of my bottom and I was just floating. She was still holdng my top half, but it was a bit scary to be kicking my feet around, so Mummy held me again and Daddy washed all the soap off me. I liked that bit with the dripping water and the flannel. Then I got turned over onto my tummy and that was nice too, then I could see the water! Then I go out and wrapped up in a towel and dried off. But we weren't finished there! with me all wrapped up in the towel, mummy held my head over the bath and washed my hair, that bit was nice too. Boy, did I smell good after all that!

Next I got to have a nice long kangaroo cuddle with Daddy. It was lovely. Once i went back to bed I was nice and relaxed and had a nice sleep overnight. I can't wait till we can do that again.

With love from