If I lived near family...

I haven't written for several months... I am not really sure why.
Maybe things started getting worse and I had nothing much to share except gripes.
Maybe our schedule started getting busy and I lost my rythym and it got sidelined.
Maybe I started using my phone more than my laptop and just kept putting it off "til when I turn my computer on"

The biggest thing over the last few months was: Nico had his first plane trip and Brooklyn had her.. 14th? It was our first family trip since Nico was born. (side note: our last family trip was in Sept 09. I was 4 months pregnant and blissfully unaware that a week later I would be in hospital and a month later we would have a son and our lives would be turned upside down forever)

We went to NZ to visit my family. We had a great time. It was a real insight into what it would be like if we took our current life and airlifted it to be right near our family.

Admittedly there would be several differences between our holiday and reality.
We would not be living on the ground floor of my parents house.
We would not get to go out most evenings after putting kids to bed.
Meals would not be cooked by my mum or sister every night.
We would have to go to work..
Our money wouldn't suddenly be "worth" 20% extra.

Things that would be the same however:
Mum / Dad / Sister / Brother would look after the kids occasionally
I could get Mum/Dad/Sister/Brother hugs on the tough days
Bananas would be affordable and I could have one every day.
I would have to drive my old little blue Pulsar which randomly locks and unocks the doors as you drive.

More to follow soon. If I don't post this now, I may never do it. Will add photos too

It Takes Two to Talk - The Hanen Program

A few weeks ago, I got a letter inviting us to enrol in a communication program called It Takes Two to Talk, developed by The Hanen Centre in Canada. It has been run since 1975 and is evolving continually. The program is not only for children with as severe issues as Nico but gets success across all bands of language delay.

Obviously for Nico, it will not mean that we have him talking in the 16 weeks the course runs for. We are looking at the broader meaning of communication for him: getting a message across.

At the moment we have the absolute basics of showing emotion from him; smiles, laughing, crying/ screaming and moving his head away from a bottle/spoon. He also makes good eye contact and will follow or look for but at this stage, I can't read any message in this. I know he understands a lot of words but I am not the best at gauging understanding as I don't give enough credit. I know that if I say anything containing the words "Brooklyn" "Mama" "Dada" "Cat" (or Veuve and Remy, our cats names) he will find them and smile. I am not sure about any more than that, except maybe a few other peoples names.

Today was our first day and it was just a basic orientation and meeting the other parents. Nico was cared for in another room by a family worker. I thought he would be the worker looking after all the other children from the program but was pleasantly surprised that it was a mainstream playgroup and the family worker was there just for him and the other kids had their mums. He was happy and giving lots of smiles.

We haven't set goals yet but I think I know what Nico's will be for this year. I imagine it will be to give him an understanding that what he does can get him something. For example, if he looks at an object, then at us, then at the object again, he will get what he was looking at. Ultimately a yes or no would be great too. It may not be a full nod or shake, but a single 'chin down' for yes and side to side for no could be a realistic expectation.

I am hoping one day in the not too distant future, he will have enough limb/ body control to get some more signs and the concept of words has not been ruled out either. Just not too soon. We have to live by the "hope for the best, expect the worst"  motto, or in our case perhaps "Hope for the most, expect the least"

Dear Nico - 21 months and Princess Brooklyn - 3y + 5 months

Dear Nico and Princess Brooklyn

Mama is too disorganised and busy with a gazillion appointments this past fortnight and the coming week to do two seperate posts.. so this month, you are combined and intertwined in my blog. Just like in real life.

The biggest thing to have happened this month was Nico's Toybox: The Auction. This raised about $2400 for us to ensure that you, Nico, get some more things that you need to make life better in whatever way. It was originally for toys but through the magnificent generosity of some dear friends Bec and Tom, and friend Renee's family members (Sandra and Jess), they were taken care of already.

Having had Saturdays free has been lovely. This past weekend we were meant to meet up with some other Nicu grad babies and families at Healesville but the morning didn't go to plan. Instead, later in the afternoon we went to a small but closer one. We got to hand feed kangaroos and Brooklyn, you were a celebrity with a group of Korean tourists. The moment they spotted you they ran over and were talking to you and asked if they could take pictures with you. They thought you were adorable too, Nico, and got you in on the action too.

It has been school holidays so a lot of our weekly appointments are off for 3 weeks; early intervention, swimming, dancing etc. I was looking forward to having a clear schedule but it turned out that all Nico's other appoinments were booked and we have been busier than ever running here and there; rehab, physio, case management meeting, HEN - Home Enteral Nutrition, gastro...


Brooklyn: "Mama, I wanna sna-a-ack"
Me:           "You just had some cheese and an apple"
(5 minutes later, runs in to me)
Brooklyn: "Mama, Upsy Daisy really needs a snack b'coz she didn't have any and she really wants some...umm.. crunchy bits"

P-plater car on the road as we are driving
Brooklyn to Holly  "We don't need a sticker on our car.... coz we are good at driving"

Me:          "Brookie, bath soon ok?"
Brookie : "Yep. I am gonna splash around like a handbag whale"
me :         "Ermm... Do u think u might mean a humpback whale?"

Letter from Friends

Keeping my words short as possible:  long letter attached.

The back-story in short is that through a newspaper artice, I found out the all the toys had been sorted for Nico before the Toybox auction started. The ladies advised me one person wanted to buy a toy outright and I found out after a few days that it was a friend's mum and sinster-in-law. I was lost for words, I doubt I said more than "OMG, how lovely!! Say thanks!!" and still haven't expressed my gratitude nearly enough. It arrived last week. Here is a pic of Nico with it.

Laughing at Elmo after dinner.

The other three, the only hint I got from the organisers was "It is a surprise. All I can say is you have some amazing friends" and I figured that many small cash donations had come in or a group have done a whip around and bought one.

So, as if I hadn't had enough tears over the last few weeks from being overwhelmed by kindness and gratitude... yesterday I got this: (I changed took out names in case they did not want to be identified. When I get confirmation, will change)


Dear Kazz and Geoff,

I'd like to start by saying that Tom and I have always thought you were wonderfully warm, kind and generous people.

How truly that has been demonstrated over the past 2 years when your patience and willingness to love has been tested more than most.

We have sat on the sidelines, feeling useless, wanting do to more but restricted by time, illness and distance, only being able to give a kind word now and then or a an occasional knitted gift or general encouragment. We always wished there was a little more we could do to help you all.

When I first saw your blog where you talked about Nico only having the toy on loan I knew immediately that giving Nico this toy was something I could do to help. Husband and I talked about it and decided we would give you the money for the toy.

However when 'Nico's toybox' came along I wasn't sure what to do, to let the auction go ahead or still give the money for the toys. The great thing about the auction was that they listed the toys he needed, and where to get them from. This allowed me to do some research.

I found out that all the toys are regular toys but they have just been modified to fit 3mm plug for the switch, and some have had additional modifications for things like stability. The 3mm plug modification are all done here in Australia, but toys with other modification are done in the U.S. I found out how to modify the toys myself to fit the plug (or get a sparky to do it - but it's a 2 second solder job), but further modificatons can't really be done at home.

In the process of finding out all of this I found out that the butterfly spinner, the air-tivity ball popper and the triceratops weren't available at Tec-sol anymore (gone for more than 6mths), nor where they available anywhere else in Aus.

They did of course have the big red twist switch which we bought and received weeks ago. It is here, all wrapped up for Nico.

I started looking overseas and was able to find the butterfly spinner and the air-tivity ball popper in the U.S at the company that modifies them and then on sells them to other companies such as Tec-sol. Only problem was, you needed to be a U.S resident to buy it.

Okay, new hurdle. Then I started looking into ways I could possibly have something shipped myself from there to here, supposing the company would agree to that. I stumbled upon the answer, and am now a proud resident of Connecticut!

So the company shipped the packages to Connecticut, and then they were shipped from there and are now on their way here (they are at Melbourne Airport customs now.) So I'm expecting them here early next week!

Next thing was to sort out the triceratops. Little harder as Fisher Price hasn't made them in about 2 years. After a week of watching Ebay (in all different countries!) and looking on other sites I finally found one new and in a box on Ebay in the U.S. But, the seller was away until the 7th of July, so I couldn't purchase it until then. Shipping is fine, straight to Aus, so we should see it next week or the week after.

Only problem is it's obviously not adapted. Two choices, I can give it to Tom to solder the plug on, or I can take it to Tec-sol and get them to do it. I think I will take it to Tec-sol, as although I think Tom could do it, I'd rather not test him out on something that was the only one left on the planet!

So basically, all the toys and the switch are sorted and on their way.

We really love you all, and this is a way we can help you out and and make your lives a little easier.

Lots of love,


Bec, Tom and Steph


Aside from saying "I want to call you right now but I can't speak, I am bawling" I couldn't think of a single thing that would even start to express what I was feeling.


I still can't.

Thank You Nico's Toybox

This is not going to be a long post. Well, not as long as I could make it. It could be over a thousand words if I wanted it to be. But reading "Thank" 500 times with 500 x "You" in between may get a bit boring.

Thank you.

Thank you to the main ladies who organised Nico's Toybox. I believe they are Jacqui, Nicole, Stacy, Kath and a little whisper has just advised me that Crystal may also be a key player :D  They have never really come forward and told me, sneaky ladies that they are. I just have to go by who has emailed me with Toybox queries. I don't have enough vocab to truly convey my gratitude.

Thank you.

Thank you to the rest of the BabyCentre Jan '10 ladies, and all other friends and family that joined the page and publicised it by sharing it on their facebook wall. There are now over 700 people following which is literally 10 times more than I would have guessed before things took off. I was never any good at Jellybeans in the Jar competitions either.

Thank you .

Thank you to the 50 or so people who have so generously donated the 70+ items which are up for auction. It is such an amazing gesture kindness. I know the ladies were targeting the WAHM's (Work At Home Mum) but even this has surpassed expectations with an amazing number of WAHM items as well as many other fabulous donations. It is taking great effort not to bid on a lot of items myself! Extra shout out to Locket who (when I get myself organised and email them) have offered to make Nico his own Ballon Ball as well as offering one for auction

Thank you.

Thank you to the bidders. Without you, all the girls hard work and the donators generosity would have been for nothing of course. The products on offer are fantastic and I know that you will be getting great items in return for your money.

Thank you.

Thank you last of all to the people who have made cash donations and purchased Nico a toy outside of the auction. I am not sure if it was meant to be kept from me but the newspaper tipped me off. (I did recently find out that one toy buyer was a friend's mum and sisiter. Bless them!)

 Also, whoever it was that tipped off my local paper : Thanks and who are you? I am sooo curious ;)

Thanks so much everyone one, I still get overwhelmed and teary about it.

Love much,
Kazz... and moreso Nico, even though he can't express it just yet.
xxxx

Princess Brooklyn - 3y + 4m

Princess Brooklyn,

You are starting to freak me out a bit now. Could you just stop growing, learning and getting all independant on me please? I can not imagine a more enjoyable, hilarious, infuriating and perfect age. You can have conversations about most things and your view of the world is just delightfully simple.

Racial Integration and Assimilation.
Me" Brooklyn, don't say dance (daence) say dance (darnce)"
Brooklyn "But we say daence"
Me "But we are from NZ so we say darnce"
Brooklyn "Well, we are in Australia now"

The Theory of Relatively
Brooklyn "Nico is tiny. And Tyson. And Bailey. And Sam is teeny tiny"
Me "Do you know the opposite of tiny is huge?"
B "Yeah, like dad, he is huge. I am half size of his huge. "
Me "Yes, you are half his size. And I am middle sized"
B "Yeah, you are short"

Don't be Sentimental
Brooklyn "I think that truck did crash into that car"

Me "Yeah, we don't want our car to crash do we?"

B "Noooo!!"

Me "I had a car crash once when I was younger, but it was just a little one like a bump"

B "Did you? Where?"

Me "In New Zealand when I was 20"
B "Well, you don't need to worry about that when we go there to New Zealand."

Being Tactful
(Cuddles in the middle of the night during a storm, you were a little scared, I was lonely with dad away and thought we would both like it if I fell asleep there)
"I love you Princess"
"Me too Mama. But you can go to your bed now"

You started swimming lessons again, for the first time in a year, two weeks ago. You ge to go in by yourself now and I sit in the wating room behind glass. I was a bit worried that when the teacher wasn't focussed on you, you would just be splashing around not knowing that you were meant to continue doing whatever it is. I was also worried that because your friend Riley is in the class too, you would be a distraction to eachother. You were PERFECT. You held on when you were meant to, you kept kicking/ floating/ lying back while the teacher was working with the other kids. You listened and most importantly, you had a fantastic time.


Swimming lesson. Fisrt one alone



Dad has been taking you to dancing every Saturday morning because I have been working. There was an open day last week which was my first Saturday off so I got to watch which was great. None of you can star jump properly and you sound like a herd of elephants as you all do "Butterflies" across the room. The tap dance part of the lesson was Nico's favourite because it was so clunky. I can not wait til the end of year concert.

 

It is school holidays coming up so swimming and dance will be finished for a few weeks as well as Nico's group. I am looking forward to catching up with your friends as the schedule opens up.

Hey Brooklyn, guess what?

I love you

Mama

Grateful for virtual strangers and virtual friends

Yes... this is pretty much going to be a similar vein as this one from the other day but the hugeness of what happened that day needs two blogs. That may not even be enough and there might be a blog about it every week until I feel I have done enough to warrant such an outpouring of kindness.

From virtual strangers. And virtual friends.

The virtual friends: This group of women, the ones that started this Nico's Toybox facebook thing, I am not sure what they were expecting. A few followers, a few items to get together $400 or so to buy Nico a switch toy if they were lucky (HA! "if they were lucky"?? Stupid expression, If IIIIIIII was lucky!!) They got a bit more than they bargained for though I am sure. I know I never even fathomed the response they are getting. Nor did I find out until days later that not only had they made this page... they had contacted Nico's physio/ keyworker to find out what they should get him!! Just from me mentioning once on here which Early Intervention he went to I suppose... INCREDIBLE!!


It has been 4 days now and there are 500+ likers in the group. There are about 50 items there to bid on. AMAZING items. They have a whole lot of work cut out for themselves getting this thing together, they have a baby the age Nico should be... some 2 kids or more maybe... and yet they are still encouraging more and more people to get on board. I need a bigger vocab because I am over hearing/ writing/ thinking the worrds AMAZING and OVERWHELMED.

The virtual strangers: The friends of friends of friends, all who knew nothing of me or Nico last week, donating items or joining up the group and sharing it to potentially bid. I am glad that if they bid, they will get something for their kindness, I really like that idea but still.. for everything that is bid on is a gracious, generous soul donating it to the cause, to my little man and for that, my family and I will be eternally grateful.

Thanks to Grateful with Maxabella, I can share my gratefulness even further

xxx's to virtual friends and virtual strangers

K

Overwhelming Kindness -

So back in the year 2007, I found out I was pregnant. I couldn't tell any friends because... well I don't know why but "they" say you can't and when you are a first time pregnant lady... or a first time anything, you believe "them" don't you?

I joined a parenting site, Babycentre and joined the group of ladies who were all due in March 08 and made some fabulous friends. Online and in real life. It was only natural that when I fell pregnant the next time, I joined. That was the due month of July 09 (maybe Aug 09... I think I have erased it from my memory) and I don't even know if I said goodbye to that group... I just slipped, quietly devastated, out the door after 14 weeks. Two months later I joined "January '10"  with a fair bit of trepidation. I was due 1 Feb 2010  but had a feeling I was going to be early. (Ha!!!) I didn't get too involved. I read most posts but being so pertrified of another heartbreak, I didn't post much. When Nico was born in October, I wrote the start of this blog, from pre-Nico's entrance there. I needed to get it out and I wanted to let anyone else who started getting even false labour to know that these babies  exist and are incredibly strong. then I went silent again, too busy to check more than facebook. Then they all got together on Facebook and I joined in again.

These amazing ladies, they have made me laugh every day since. They give words of encouragement and sympathy. Just generally the perfect "online" friends.

Today I get an email saying "We wanted to do this as a surprise for your family, because we want so badly for Nico to have a toy of his own. Unfortunately we can't keep the page hidden from you unless you're already a fan, so.. here it is."

:https://www.facebook.com/pages/Nicos-Toybox/230438753635663?ref=ts#!/pages/Nicos-Toybox/230438753635663

I had seen an update / share thing earlier in the day and was going to go back just because I thought "Oh, cute, great name" but I was in the middle of something so forgot all about it. I burst into tears before I even opened the link. I knew they had done something special and my my my... had they ever.

Overwhelmed is just not good enough a word.

I think I will have to buy a round Australia/ NZ/ China and Hong Kong (did I forget anywhere ladies?) plane ticket and give each and every one a giant hug... and more. Even that would not be enough

Post In Note

Dear Nico - 20 months

Dear Nico


There is not much new to tell you this month. Life is just trudging along and you are following your usual up and down pattern. Actually, you were following an almost predictable one for a few weeks; good night, bad night, good night, bad night.


I am trying to find suitable care for you for when I start working longer hours on a Monday. I didn't realise it would be so hard. The idea of you going to childcare doesn't fit with me so I am going to try and get someone at home. It's about $36/ hour from a care agency though and Windermere In Home care, the only place with affordable rates ($15) has no carers available. In Spring or Summer I would be les reluctant to send you to Brooklyn's daycare as there are less viruses then.. hopefully. I still worry that you are too demanding for them to deal with and that would not be fair to you or the centre. The great thing to come of my longer shift on Monday is that I will now have Saturdays with the family. I can not wait.


Tiffany from Bialla brought around a standing frame for you last week but we haven't used it much as you have been too grupy. I am sure you will like it when you get the gist though. We also still have the switch toy I talked about here  which has been great. I am not sure I will be able to talk them into another week though

In a Monkey standing frame

We have to get you a passport photo this week... I am not looking forward to it. There are so many rules and they are strict. It took 3 attempts to get them to accept one of Brooklyn at 6 weeks old and she was much more cooperative than you.

You have to:
have your shoulders square
look at the camera, dead on
not smile or frown
not have me visably holding your head
not appear to be lying down
have a plain background free from wrinkles or shadows
have both ears in the picture

Good luck with that. We really really want to see your Nana and Grandad though so if you could oblige.. I would appreciate it greatly, okay?

Love you much
Mama 

Grateful for night time antics

Geez. I have not been Grateful with Maxabella for a long while so I thought I better get with it this week

I am grateful for my iPod Touch.

More specifically I am thankful for Words With Friends on my iPod.

And if we want to really really fine tune it, I am grateful that I have friends in far away lands who take their turns on Words with Friends in the middle of my night. It gives me something to do while yo yoing between my bed and Nico's room... or while lying in my bed listening to his whinge/ cry/ whinge his way to sleep when I wave my white flag and give up.

So if you are in a far away land, come play Words with Friends with me, KazzBrooklynNico, and keep me sane through the very loooooooooooong nights

PS

I am also grateful for Milo.

And not having to work Saturdays anymore after today.. but that is for next weeks grateful list

Reality Bites

Talking with a friend the other day, she pointed out that I have never really written about the finer details of Nico, his prognosis and the reality of our day to day life... now and in the future. There have been allusions to things here and there, pointing to a few struggles but nothing concrete. I am not sure why.

So here we go. The Reality.

When Nico was born, at 24 weeks and zero days, 710 grams, he had or he developed a brain haemorrhage due to his prematurity. It was classified as Grade 2 but it resorbed and we thought that would be the end of it. Little did we know that this would leave a scar and 9 months later the first whispers of cerebral palsy would come about. As it can not be tested and is just something diagnosed by watching development, we never got a sit down diagnosis. It just evolved like Chinese whispers, I mention that the neurologist had said possible cerebral palsy and slowly the "possible" just dropped out of everyone elses conversation. Except mine and my husbands. We took a little longer to lose that.




6 weeks old


What does this mean for us right now?

Nico has very little control of his muscles. He has enough muscle tone to hold up his head and body but he can not control it so will either be too relaxed (floppy) or hyper extended and completely rigid, with his head and arms all the way back, like superman. He next to  never faces the middle, he will always chose to hold his head to one side, but the side changes. It makes him really hard to hold and carry around as you really need to hold him with two hands. Even if he is relaxed, you never know when he is going to fling himself into rigid mode. You have to forcibly break the lock of his legs or hips to get him to relax again. Getting him dressed is like trying to get one of those plastic dolls dressed.. but one that fights with you. His legs kick and his arms lock.

He doesn't play with things and he doesn't have the instincts to put his hand in his mouth. It must frustrate the hell out of him as I am sure he would love to play. We have a loan toy from his Early Intervention group which is called a switch toy. It is a regular baby toy (in our case a spinning type one) but it has been converted so that it has s giant button that is very easy to push. At  around $400 dollars per toy, I can't envisage us ever owning one, let alone more.   Heartbreaking thought, a child with no (useable) toys... and he really does seem to understand what to do and will concentrate really hard at times. So precious. Hopefully we can borrow one more often, but of course they are in short supply and needed for therapy sessions




Playing.. with encouragement from Big Sis.
Tee read "My dads car is faster than yours" hehehe.




Feeding is up and down. He is offered a bottle at every feed. He often refuses completely, other times he can drink upwards of 100ml. We just put any remaining feed through his PEG pump. If he doesn't really drink anything orally, the PEG will take about an hour to give him the 240ml. the plus side is, he can feed in the car while I drive, I can go and do dishes while he feeds and if he is too tired, I can just feed him while he sleeps. As I write this, I realise how crazy it is that this is just normal to us. Normal that there is a lilo valve in my little mans tummy that we just open and close to make sure he gets food enough to sustain him. Normal that if I go out for more than 4 hours with the kids (which almost never happens) I have to pack a little machine the size of a desk radio, a pole, a special bottle and hanger, a tube for the pump and a connector tube to attach it to his tum.  In a good mood, Nico DOES eat soft mushy food really well. I love to give him rusks and toast etc but since he doesn't hold it for himself, it is a chore.

In a week, I would say 3 days are bad days. Days where Nico cries more than half the time and regardless of what you do, you can't make him happy. He will be a bit quieter when being held but still voicing displeasure over something. Frustration perhaps. He is not stupid, he is not brain damaged, he doesn't have an intellectual disablitly He can think like any other baby of his corrected age. Can you imagine that kind of frustration? That kind of wanting? That kind of restriction? Knowing what you want and need but having no way of geting it or telling anyone, I would scream too.

Nights swing in favour of the bad. A good night is 3 wake ups.. or by some kind of miracle, less than that. A bad one could involve not more than 1 hour straight sleep at a time and an average of 1.5 hours with a few 2 hours for good measure. It is torturous, there is no other word. With a 3 year old munchkin to look after by day, there is little time for catching up rest. I walk around like a zombie half the time, broken conversations, a scatterbrain memory and no motivation to do anything. I would love to get to the bottom of it but the only answer we seem to get is "He will grow out of it"  which just makes me want to reply "Well, what if he doesn't just grow out of it" in a really nasal snarky mimicky patronising tone. The last week or two has been a good/bad/good/bad night pattern which has left me feeling a little better but somehow also makes the bad nights worse. It's like because I know he can do it, it grates on me more that he is not. I have been prescribed a sedative for him but i am reluctant to use it due to the side effects and addictive nature. He is barely one year old corrrected, a sleeping pill???

What does the future hold?

We will not know what he will be able to do until he does it. All we know is everything he does, will be a massive effort for him. Initially the speech therapist had said "We'll most likely be looking at alternative forms of communitcation" and knocked me to the floor. I had never even contemplated speech issues before. I was too focused on the physical. Last week she said, in a positive tone that we may get words from him yet. I wanted to cry. not because I was overcome with emotion exactly, but coz I realised how unfair it was for that statement "We may get words from him" to be such a big deal. How ripped off I feel, I can not even explain. Being robbed of pregnancy at 5 months was bad enough. Now I may be robbed of hearing my little mans voice too.

He won't be walking for a long while, if at all. Saying he will be in a wheelchair doesn't seem right for a child who doesn't look out of place in a pram... but I guess he kind of is/ will be. He still has a stepping reflex and he seems to bear weight well on his feet so I hold hope. He may be in a walker, depending how the head and trunk control goes. I saw a great tee shirt on line the other day, "Walkers: Not just for Old People" I doubt much will stop me getting him one of those, it is genius.

He is extremely unlikely to be involved in mainstream shool and if we remain in the area we are now, his school will be the Nepean School, 45 minutes away. Thankfully there is a bus but I can't even picture a tiny 5 year old, most likely in a wheelchair, being carted off to shool on a bus, even if it is a private one. The school sounds amazing and on top of CWSN teachers, incorperates team of physio and occupational therapists.

So that is the bad side of the truth. The harsher realities of my day and what I get to contemplate 24/7.  As I have said previously, overall though, I am NOT miserable. My children are the best things in the world and as much as I would change Nico in a million ways if I could, I love him as much as any mother loves their child, regardless. His smile really does make you forget he is anything but a perfect little creature.

How much I would love a new kitchen

We have recently been doing some renos and redecoration at our place. There is an opportunity for me to win a kitchen (I think from Bunnings., my favourite store) and I am DYING to win it

We have just done our ensuite ourslves and done a few little things in the kitchen because we simply can not afford to splash out on a new kitchen all in one go. Doing the bathroom reno etc  has also been fantastic to have something nice to focus on rather than Nico and his issues.


This is what my kitchen looks like. Its OK. Its not overly offensive. BUT in real life, the colours are awful together and the doors look cheap and are starting to peel. The dishwasher bangs as you open it and the oven randomly turns itself on unless you switch it off at the wall

This is what I would love it to look like (and believe it could on a realistic budget):  I love the red splashback and overall look of this kitchen. I would have a black benchtop and change the handles but it gives you the general idea.

The funny thing is, if this is actually from Bunnings, we have been and looked and chosen what we want from there. We priced it up and although the prices were great, the bathrooms were higher on the priority list.

Is it a coincidence that I ache for a new kitchen and this "invitation to express interest" in an opportunity for a reno appear in my inbox?

I know I am likely dreaming. My little blog is unlikely to win something major like this but  I can dream.... and wish... and think maybe one day karma will come and make up for the last 2 years

Princess Brooklyn - 3y + 3m

Dear Brooklyn

Times goes slower as you get older. Opa (My grandad) had a hypothesis that time went slower because it was a smaller proportion of your life as a whole. You have had your brother half your life now... and he has been home more than a quarter of it. You have no understanding of Nico's issues. To you, he is just a baby like everyone elses little brother/sister. You have some great philosophies of why Nico doesn't do things that you do.

On why Nico doesn't eat real food "He can't eat apple! he hasn't got enough teeth"

On teething "Look, Nico is getting more and more teeth! He will be able to eat food like me soon"

On walking: "My feet are big. Nico's feet are small. When his feet get big, he will walk like a big boy."

On talking: "Nico is a baby. Babies don't talk"

I love the innocence and I can't bring myself to explain to you that Nico may never walk or talk. I know you love him and know you , like us, will love him regardless. I just prefer to keep your idealistic view of the world where although you know about hospitals, meds and oxygen, you know nothing of illness, diability or death.

A few weeks ago, the news was on while we were having dinner. I tried to distract you but you are a sponge.

"Mama... umm... that man did kill that ladies girl. Why did that man did kill that gir?"

What do you say to a gorgeous 3 year old princess asking that question? You thank the lord she doesn't actually know what "kill" means and she is happy with the answer of "he is not a nice man, and it was very naughty so the policeman got him."

You also caught a glimpse of a lady in labour and asked why she was screaming. I explained she was having a baby and it hurts your tummy when you have a baby. This was about two months ago. A few days ago, I told you Luana had to go to the doctor because she had a sore tummy. You asked why and I said that the doctors were not sure but they were trying to help. "I know why! Maybe a liiitle baby did come out!!" and you were so excited.

Imaginitive play is your biggest pastime. you love making your toys have conversations and at bedtime I have to use Lion to talk to you. "Brrrrrrooklyn?" (Nod, giggle giggle) "Are you a bear?" (shake your head) Are you sure? Do bears have eyes? YOU have eyes!!" (giggle giggle) "Do bears have arms? YOU have arms!! You must be a bear!" (dooubled over - NO!) "No? Well, do bears have a mouth? You have a mouth! Do bears have a wet nose? YOU have a wet nose!!!" (and I lick your nose) and you're in hysterics.

Anyway

Hey Brooklyn... Guess what?
I love you.

Mama

Dear Nico - 19 months

Dear Nico,

It has now been a year since you came home. It really was the best day ever, even knowing what I know now... about life and how it is. That day, the day Brooklyn was born and our wedding day. The day you were born, the joy that usually comes with childbirth was there to some extent but it was overshadowed by fear, uncertainty, doubt and worry.

Until the day you came home, it never really lifted. The heavy cloud dissappated to a light mist but it was always there. Every trip to the hospital, every application of the avaguard, every step through the glass doors into that NICU bubble... all a reminder that the rug could be pulled from under our feet at any moment and we could be dropped a few "bays" and the wait for your homecoming could be longer.

A year down the track, at almost 19 months old, I got to spend my first mothers day with my little family all together. You must have known it was important as you gave me a decent sleep and had a restful day. I was not well that weekend but when I got myself together, we took a drive down to Phillip Island to spend some time out as a family. This is a very rare occurance but again, you put on your best face and we had a great day at the chocolate factory and having Fish n Chips by the pier at San Remo. We got to see a seal diving for fish and tried to show you but we were to slow by the time we got you out of your chair, it didn't resurface anywhere we could see it.

As for the rest of the month, we have increased your solid food and mostly you enjoy it. Lumpy stuff still makes you gag though. Nights have been up and down, we have had some shockers where you like to ensure that I see every hour on the clock through the night. We have had some good ones where I have only gotten up once or twice. A few nights aog it was just once and while having a break from your bottle, Veuve came into your room to visit. She kept poking her head over the foot stool and had you in hysterics. My favourite sound in the whole world.

Love you my little man
Mama

Practical Parenting Magazine makes me reflect

I got interviewed by Practical Parenting magazine this week. It's nice to be able to share our story and reflect on how far we have come.

The focus of the story was going to be living with sleep deprivation but I am not sure if I was able to give enough insightful commentary on that side of things. Not because I don't know enough about it but because after a mediocre night, at 10am when they called, my brain hadn't woken up and I felt like I was sturuggling to put coherant sentences together

It's funny how speaking to a person not involved in the situation makes you realise how insane it must seem from an outsiders perspective.

What goes through your mind when havnig a baby at 5 months pregnant? How do you not end up in a psych ward after over 7 months of daily hospital visits? How do you not fall asleep at the wheel driving to countless medical appointments weeks of waking every hour or two?

Hearing the story come out of my mouth, I know it all sounds incredibly traumatic and difficult. If you follow my blog, it must sound like my life is awful and how do I drag myself out of bed every day. It was probably pretty traumatic, I won't pretend like it was ordinary, but even at the time I remember thinking "This should be a lot harder, there should be more misery and more prolonged tears". Reality is, life continues around you and you get sucked up into it.

I remember so clearly, the day my Opa (grandfather) died, I looked out the window into the traffic and was honest to god shocked that the rest of the world was just going about its daily business. How dare those people not have cancelled their plans for the day. Who was that insensitive couple laughing as they walked past. The feeling lasted a few days. I had the same thing for a little bit with Nico, but not long... Brooklyn's life went on as per normal and therefore mine did too. I would have loved to curl up foetal position in bed and not get up for days just to recover, but on top of 19 month old Brooklyn's needs, there was expressing to be done, trips to the hospital had to be made. I was grateful for the To Do list, it gave me direction I needed toget back into life... and apart from not living with my newborn baby and having to visit him, life felt normal within a few weeks. It stayed feeling normal most days of the entire 7 months.

So I know I use my blog as an outlet and therefore I most likely write more about the crappy side as that is the bit that needs outing. I don't want anyone thinking I get out of bed in the morning and lead a miserable existance, feel sorry for myself and only face the day because I have to. I get huge amounts of joy from both kids and as hard as it is dragging myself out of bed after 3-6 hours of broken sleep, most of the time by mid nappy-change-upon-Nicos-wake-up, there is a smile on my face as I curse his cheeky grin and how he looks like he has just woken from 12 straight hours of sleep.

Princess Brooklyn - 3y + 2m

Dear Princess Brooklyn

This whole month you have had your Nana Shona staying which has meant that you get an extra set of eyes to entertain. We haven't done too much exciting unfortunately, mainly due to lack of sleep and the weather not being too great. You had a few birthday parties this month. I  had to drop you at one and leave because I had to go to work. You had a great time, my favourite was Millar's bacause I got to take miniature train rides with you. I love having Brooklyn and Me time.

Nico's group is not on in the school holidays which has meant that you and I got to go to YOUR playgroup on Wednesday mornings. We made Easter baskets the first week and then had a little easter egg hunt the second week. I love watching you play with your friends, realising how much you really do play together now, rather than just along side each other. You make dolls/ figures/ animals talk to each other and will try to include everyone in the play. Games are still a bit out of your league. You understand taking turns but any other type of rule escapes you. Maybe in a few more months.

Holly comes to play here once a week or so, and you sing/chant "We are best friends, we are best friends, we are best friends" (Well, it is more like "We are bes fens" but we know what you mean) and have a great time together. You cuddle up on the couch for quiet time and watch Tinkerbell or Barbie. You have been going to daycare together on thursdays for a few months now so I think that made you even closer. You are going there for Easter today with Nana Shona and Dad, I will be there after work. We did a mini one in the front garden this morning

You have been helping me out in the kitchen a fair bit the last month or so too. Pouring, mixing, scraping. I think the only reason you like baking is to lick the bowl. Popcorn is the other favourite at the moment. Luckily we have glass lids so you can see the kernels popping and bouncing around the pot.

Just this week, we painted the hallway, dining and playroom. you got to help out in your playroom and were very good at it. You had a great time and were very proud of yourself.

Also this month I found my EFTPOS card you were "playing" with in September. In a bag of cotton wool balls under Nico's change table.

Hey Brooklyn, guess what.
I love you

Mama

Your funniest utterings this month.

"Mama... look... Dad is full of it!!"  (He was standing on a chair, leaning on the wall painting. I think you meant something ab out falling...)

"Nana, put that dirty old thing out and come and play!" (cigarette)

Driving "Mama, can I sit on your lap?" (No, you are not allowed, the policeman will get angry) "But he isn't here! He can't see me!"

After i told you to go to the toilet, which you didn't want to "Oh! Bother!!"

Hands

So there is a competition going on I thought I would enter.

Your best/ favourite bodily feature. I don't like much about me... so it was a bit hard. I was thinking eyes. I get told they are pretty cool. The problem is writing about your eyes and why you like that part.

"I like my eyes because they are pretty and blue, and I get complimented on them." BLAH!!!

SO I chose this

 I know it is a crappy photo but it was blown up.

My hands. I like them.
They are big for a lady but not manly... and they can pull off chunky jewellery.
They are delicate (and steady!) enough to thread a needle
They are strong and don't usually need a man to open a jar.
They are gentle and their touch can take away my childrens fear.

Research done on little micro prems like Nico, when they are still tiny, in isolettes, struggling to fight... a simple touch can improve all their vitals. Oxygen intake, heart rate, blood pressure. They are magic. When you can't do anything for your baby, not even hold him in your arms, feed him, lift him...the touch of your hand is all you have. The only thing you can do is softly hold his foot, place your palm on his back or your pinky in his fist and believe you are making a difference in his fragile life.

Nico at 6 weeks old

I love my hands. Not only as a body part but for what they have come to represent for me. They remind me of Nico's size, his progress and his struggle.

I also appreciate being able to scratch the annoying mozzie bite on my knuckle.

SO what about you? What's your fave body part? Take a photo and enter it over at Danimezza's blog.

Dear Nico - 18 months

Dear Nico,

A little late this month, it's been a bad week so I had to chose sleep over writing.

18 months is a milestone and it makes me sad to realise how old you are. I don't know how to express why without sounding negative and like I wish you were your sister but I will try. At 18 months your sister had experienced so much, she had been overseas half a dozen times, had holidays and her life was great. She was having playdates and running around like a crazy chicken, learning so much. We didn't know it at the time but she was about to have an amazing little man come into her life. You were supposed to be many more months away. I look at your day to day life and my heart breaks for you. Still so trapped, so frustrated. Watching life go by, understanding what is going on around you but not being able to participate the way I know you would want to. Not being able to give you the usual experiences a 1 1/2 year old has. It's just not fair.

You have your squiggle chair now, albeit with the wrong head support. It means you have a good supportive place to sit and we can push you around the house. It goes high to be at table level with us, or low to be at Brooklyn's play height. She loves to push you around and I think she is a bit envious of your cool chair. She loves her Mister Man and tries so hard to make you laugh or smile. You definately know what I am telling you when I say "Here comes your sister" or "Where is Brooklyn?!" and you get really excited. Lately your favourite game is to chase her around the house. I hold under your arms and you run after her. It makes all of us laugh and gives me warm fuzzies.

We continue to work on teaching you to control your arms/ hand/ feet. There have been some good signs, all dependent on your mood. Biala (Early Intervention) has a lot of "switch toys". They are your usual baby toys with music or movement but they have been adapted to have a giant switch, about the size of a large saucer/ small bread plate. The idea is to get you to hit the switch with your hand or stomp on it with your foot. You are good at it with your foot, stomping is a natural movement for you. On the right day, you are getting your arm/ hand to do it as well, if you are lying on your side and we support your shoulder to get you arm forward. I am such an emotional mess, I often cry when you get it right. Silly I know but it is such an encouragement to me that you will be able to amuse yourself at some point in the future and not just have to sit on the sidelines.

Today you got your  Bard Button, which looks like this the top sits on your skin like a little lilo valve. It should make you more comfortable when sleeping since you insist on being on your tummy. The tube you had really annoyed you. It will also make it easier for us to dress and carry you. It was a quick op today and even though you were pretty miserable after coming out of general anaesthetic, by later in the afternoon you were back to normal.

You have been pretty unsettled the last 2 weeks, I think because of your molars. you have one giant one through now and the other 3 are all so close. You are back to hourly wake ups most nights but go back to sleep pretty quickly. I just wish I could do something to take all the pain away, teeth or otherwise. I feel so helpless and hopeless. I really do feel like the worst mother in the world when you are screaming... I want so much to fix it all but just have to walk away sometimes to avoid having a breakdown.

Pics to come.. sometime soon

Love every little piece of you, but most of all your giggle.


Mama

A blogs life

Something a lot of people wouldn't know, is that when you blog, you read a lot of blogs and there is a littlearge community of bloggers out there, entertaining and supporting each other, most of all giving the writer an audience. I am new to this little world and admittedly am still finding it a bit strange and don't think of myself as a true blogger like all those people I love to read. They are all fabulous writers, I am just keeping journal online which I choose to allow others to read. One day maybe I will feel good enough, interesting enough, and be creative enough to feel like I am one of 'them'

I know the lovely Toushka, (before I was a blogger) She was kinda my little mentor without even knowing. I 'followed' her onto a parenting site that she had told me about and started to blog there, not even knowing what blogging meant. I just thought I was sharing my story... after losing our middle bub, it was a way to cope without dragging 'real friends' down too much with my misery. The support I got from people who had been through similar experiences was great. When Nico came along I decided that, like Toushka, I would get a blog site so I could pretty up his story. My intention was to print off a copy as a book once the NICU journey was over.

Through this, I discovered the blog community and have peered into the lives of people I have never met. It's a mixture of reading a book that never ends, watching a TV series and learning about a new friend. One of my regular reads Singular Insanity  was at kids party I went to. Her face looked familiar to me but I was not 100% sure... then she said her kids names and I knew. Here is a person who; you  know by name and  face, you know a fair bit about, you have had small conversations through Facebook or on blogs... and yet you haven't met nor was this a planned meeting. I tend not to put photos of myself online so I didn't expect her to know who I am. I felt like a stalker meeting the ...victim (??) and really wasn't sure how to say hi... or how much - if any - of what I had read of hers, I could make reference to without coming across like said stalker!

Next week, I'm going to dinner with a group of bloggers (including Singular Insanity) organised by  Danimezza  who is in Melbourne for the week and I am not sure how its going to be. I haven't been out with new people, on my own, in years. I can't wait but I am freaking out. I might have nothing to say. There might be a secret language that I don't understand. Maybe my 800-1000 page views makes me ineligible to even call myself a blogger and I will be turned away. Or maybe I will have a great time, meet some fabulous people and reclaim a little bit of me.

Sticks and stones

Warning. Uncensored post. Not designed for warm fuzzies. Just letting my fingers type and see what comes out 

Words hurt. Words can eat you from the inside out. This past 2 years certainly proved that to me.

GP: "An MPT. Medical pregnancy termination" (in response to my asking what I had just sat the ED for 8 hours waiting for, only to be sent back to my GP to tell him he was meant to make a booking)

Genetics specialist "Your baby is not compatible with life outside the womb" (not Nico, middle bub)

Sonographer "Your cervix is short and dilated which tells us you are likely having this baby sooner rather than later" (at 20 weeks pregnant)

Obstectrician "Probably better to go into labour in the mext 2 weeks, then it can be called a miscarriage"

Obstetrician "I would prefer it if your husband were here when I tell you this, but your waters have certainly broken and you are quite dilated" (the day I turned 23 weeks)

NICU nurse "We had to resuscitate him"

NICU nurse "Take him and get the mother out of here, quick."

I am getting pretty sick of these words, nesting in my head ... lurking in the back, seldom used corners. Like a spider you glance at now and then, expecting it to just go away if you leave it long enough... and to your surprise is still there, everysingle time, looking like it hasn't even moved.

We have our precious little miracle man and although he comes with a new set of words I would rather not hear, we have him. So now I just have to get rid of those cobwebs that are cluttering my brain and focus on the blessing that is my children, husband ... family and friends.

Flash back.

Today I had one of those days. A day where I just wished I could rewind my life 5 years and be in a place where I have no one else to take care of, no one to worry about or sort out. Just for a day. The time where I could lie in bed all day because of a minor but persisting headache. The time where if I didn't want to cook dinner, I could have Weetbix sprinkled with Milo and no one could care less. But that was then.

5 years ago, I lived the high life. Literally. We had an apartment on the 22nd floor in the CBD of Melbourne.  Our view extended from the MCG to the left, Albert Park dead ahead, to Port Phillip Bay over Port Melbourne on the right. We had a gym, tennis court, swimming pool and barbecue area on the 3rd floor, and the Crown complex was at the end of our street, 3 minutes walk away. Every day I walked into that building, through the foyer with its little couches that no one ever used, I felt like I was living in a hotel, but in a good way.

We lived 3 floors up from where those front balconies become triangular

We both worked 5 days a week but somehow we saw more of each other then. Our life comprised of shopping, bars, lazing in parks and going for drives. My favourite weekend away was to the Japanese Mountain Retreat. Just driving into the grounds, we knew we were about to be experience something special... being shown into the room was beyond serenity. Shoji/ rice paper screens, tatami mat, neck deep bath next to a giant picture window overlooking a private miniature Japanse garden.

I'd only like to go back to that life for short periods though. A day or two a year would suit me just fine (unless it was to the retreat... I would stay there a week a month) In this life, we can step outside to a yard, albeit small, and not not have to take an elevator. I love to wake get up - after 7am please- to my gorgeous children's smiles rather than brief acknowledging ones from strangers on the tram. We have true friends now, not the fickle "See-You-At-The-Bar" type we mainly had in our city life.

And if I have to get up in the morning, against my will, and brave the headache... these are the two that I want to stumble through the day with.

Even if Prince grumbles all day and Princess steals my convealer, puts it on her lips and plays annoying Hannah Montana songs on the guitar.

Truth or Lies - censoring yourself

Now that I am reclaiming myself and daring to venture out of our house a bit more, I have encountered a hurdle. I haven't intentionally been avoiding this hurdle, I just hadn't thought of it:

People.
New people.
New people not connected to the hospital world
New people, not connected to the hospital world, who ask Nico's history
New people, not connected to the hospital world, who ask Nico's history,  look at his gorgeous face and say "But he is doing ok, isn't he?" or worse the statement "He will be fine!"

What do I answer?

Do I lie : "Yeah, he is great, he just needs some time and he will catch up"
Do I tell the truth: "No, actually he is not. He may very well never walk, talk, go to regular school or do anything remotely close to every regular parents hope and dreams for a child.We will never know until he does it"

I dont know which.

 

If I lie, I feel like I am in denial or worse: that I care what the person thinks and would be embarrassed in some way. The truth with this lie is, it is censorship... it is just easier that way for both of us, but inside I feel ill about it.

If I tell it like it is, then I sound like a sad sack / sympathy seeker and would pretty much kill the rest of the conversation.

I am going with a vague "Oh look, he has issues but we will get there" which is all very lovely but if someone said it to me and I was genuinely interested, I'd take as being evasive and sounds like a request to change the subject.

How do you answer difficult questions... no let me rephrase that... what do you do when the answer is difficult? Do you censor yourself?

Princess Brooklyn - 3y + 1m

Dear Brooklyn,

You started dancing this month, at a school I mean. It has definately been the highlight of your month. Maybe even your year. You and your two little friends look so beautiful in your leotards, skirts, tights and shoes. It is a mix of ballet, jazz and tap and in June you will be putting on a mid year show for us. I can't wait!

Fairy wings not really part of it!

Your new found independence has now extended to making sandwiches. You have to do it yourself most of the time but under supervision of course. I have taught you to hold the bread flat on one hand and the knife in the other, and you are great at scooping out peanut butter... the rest of the process you are still mastering. The idea of holding the knife flat to spread the peanut butter doesn't quite register so you hold it the same position you would to cut the bread. It makes for a rather lumpy sandwich with tufts of bread missing but I am sure it tastes better than anything I make you.

Hey Brooklyn, guess what?

I love you

xx Mama xx

Brooklyn quotes of the month

"Yes Mama, I am tall ... but my head is small, it needs to get bigger so I can touch the ceiling"

"Phew, that's beda. now the hot weather won't ged in my eyes!" (as you put your sunglasses on)

Nana Shona is over staying with us again to escape the earthquakes. You make her laugh every day, but I think you filled me in on a secret she didn't expect you to talk about.

"Nana Shona can take out her teeth!!"... "They not real teeth though. They just p'etend."

Grateful for sleep

Those who know me know, I get little sleep. Those who don't know me and read this, have probably guessed that too, given the fact that I bought a domain name called Sleep Deprived Mum

Now, I am still sleep deprived (thank goodness.. I have no back up name, whatever would I do!) but...

I have been getting sleep!! Mini Miracle, the boy who never sleeps, has taken to giving us approximately 4 night a week with only 2 wake ups after 10 pm!! Sometimes even just the one. One night, he slept from 8pm to 5.30am. Of course that was the night I was lying in bed wide awake with aches and pains, but that is beside the point.

This leaves 3 nights where there are more than this, and sometimes it is the hourly wake ups that we have come to know and ... not love. But I am still grateful. No big surprises that due to this sleep, i am much better equipped to tackle the days.

Thank you little man, I am so grateful for the sleep. I feel like much less of a zombie

Better go and think of another name for my blog site incase this continues, or shock horror improves even

.Join in Maxabella's bloghop, be grateful!

Grateful for every little thing

What an awful few weeks... months even... it has been at this end of the world  in all corners of the globe.

Quakes in Christchurch, floods in Queensland (and most other states of Australia), quakes in Japan and the aftermath of those quakes: the tsunamis around the Pacific and the nuclear emergency at Fukushima...


http://www.guardian.co.uk/world/gallery/2011/feb/22/new-zealand-earthquake-in-pictures



There is nothing else I could possibly be more grateful for today than "my world". My husband, my children, all my family, my friends, my home... 

I can go to the shops and buy what I need (not everything I want but...) and know that I will not suddenly be charged $10 for a loaf of bread or litre of milk. Ok, $9.98 for a kg bananas is a rip off too but it is one I can understand and an item I can live without.

I can breath clean air and I can leave the house without fear. No fear for my health nor for my safety.

I can sleep at night without being terrified, waiting for the next onslaught of shaking.

I can walk through my city, my suburb, and recognise it. There are no broken buildings, there is no silt covering everything

http://lazacode.com/around-the-globe/10000-people-missing-in-japanese-port-afp

I can turn on my TV, see the devastation, be devastated and ensure family and friends are ok... then switch over and watch my favourite show or go and make a cup of tea, and all but forget about it.

It almost feels like this is a really bad movie we are all stuck in. A movie with a totally unbelievable plot about disaster after disaster. The only difference being, I am not a heroine trying to save the world as everything crumbles around me, just missing me by millimetres. I am an onlooker. Helpless. Unable to do anything but watch and shed tears.

To read other peoples  "Grateful for..."  head to the blog hop

http://maxabellaloves.blogspot.com/search/label/Grateful