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Then and Now

I have to say Maxx was the perfect baby and if I could have children naturally I would of had alot more, but then as my mother said I was the perfect baby and then she had my sister lol. He never cried, loved his food, slept through the night and was overall was just a happy little boy. I sometimes use to look at him and wonder how he could handle anyone touching him at all with all the blood tests he had everyday, or the xrays he had, being flipped from side to side in his humidycrib and when I mean flipped I mean it. They use to put one hand on the baby's head and another one on the feet and just turn them. There was one nurse we hated, we use to call her the hamburgler from McDonalds as she flipped him like a burger I wanted to slap her silly.

He developed his own little personality and loved the attention...well first grandchild on my parents side I guess he got alot of it but so deserved it after all he had been through. Loved daddy singing him to sleep at night and still up until now it still happens.

Being a prem we always were worried about the damage and developmental delays that he would have, I think even more so because he was on HFO (High Frequency Oscillation)

This machine kept him alive first when he was born and then for another 5 weeks when he got sick and caught pneumonia. If a baby is kept on here for too long it can have side effects such as blindness or sight damage, brain bleeds or even brain damage and with him being on it as long as he was and a couple of times needing 100% oxygen we knew there would have to be something that would happen. But no yet again he showed us, no brain bleeds and thank god he's eye sight is perfect.

He put on weight quiet well and normally sat in the 70th percentile but was never a chubba. He loved a good chat and as soon as he could roll there was no stopping him, lost count of how many times I had to rescue him from face plants. As soon as he found his nasal prongs and realised they could come off he would give it ago, even if it mean't ripping the tape off his face that held them in place. Then there was the times when he came off oxygen for periods of time he would scream bloody murder when it was time to tape them back on....anyone would of thought we were breaking bones or something.

Took him a little longer than usual to get into solids but I tend to think this has come from being tube and bottle fed. I got to breast feed him for a few weeks but I wasn't producing enough and he was getting frustrated. He just loved his bottles and still does, but when he eventually started eating solids there was no stopping him he ate anything. I think too I tended to pull back abit with his solids as if I saw him gagging I would stress and think I am not letting him choke to death so would then just give him a bottle and not give him any solids for days. But now he just eats what we do and if we're not quick enough to give it to him he lets you know, its almost like having a dog because if he see's you eating he is there at your feet in a flash. The only thing is he won't feed himself, I know he can do it because I have seen him do it a couple of times but he won't have a bar of it. I've been told it's a boy thing but as long as he still doesn't expect me to be hand feeding him when he's 21 lol.

Before I knew it I was watching him try and sit up and encouraging it. He was so cute to watch push himself up and at the start you could see he was pretty proud of himself. I remember thinking god I can't wait till he crawls then I don't have to carry him everywhere.......well what the hell was I thinking. First of all once he started crawling I actually realised that this little man was growing up and I no longer had a baby, he no longer depended on me 100%, but second of all he was all over the house, in every room, under your feet and anything within his reach was soon on the floor or taken to another room. As from 6 weeks ago he is now standing and walking around furniture. My house is is mess, I have locks on every cupboard and draw, he loves the oven and dish washer, likes throwing his toys in the bath, if it flashes or lights up he wants it and can sniff a remote control out at 40 paces which may come in handy if we ever loose them!

As mentioned earlier he always slept through the night and during the day it was in my arms....big mistake and I can hear you saying it too. When he was in hospital it was encouraged that you held your baby due to the lack of contact prems have when first born and I didn't mind one bit, but I did the same at home and it was because I just didn't want to let him go. I didn't hold him for the first 7 weeks of his early life and not having him at home when he reached term I felt as if I was missing out on his baby life, I would just stare at him. So as the months went on I found myself sitting on the couch for sometimes up to 6 or 7 hrs a day while he slept. I wouldn't eat, and as soon as he was a wake I found myself shooting around the house to do a quick clean. So when it came time for me to start putting him in his bed during the day he would scream bloody murder and it would go on for hours if I left him and even though he was asleep before I put him down he knew what I was doing.....I don't know how but that kid knew. So I started laying down with him in our bed and it seemed to work, at the start he may have only slept for 15-20 mins but it was working so we went with it, he got use to it and started sleeping for longer periods of time. I know what alot of people say about that type of thing but you know what.....we didn't care, if it was working then it was giving me my sanity back, giving me some me time where I could actually eat something or go and have a shower. Maxx's is now having one sleep a day so I have had to get use to rearranging my day again. When he had 2 sleeps I would have my breakfast, shower and do some cleaning before he woke from his first sleep then with his second it was lunch, cleaning and organising dinner but now I am getting use to doing things differntly. In saying that he is getting old enough where he keeps himself occupied while I can get things done.

I still stare at him and can't believe he is mine, he melts me with his smiles, he's laughter and his beautiful nature. He says dad, dadda and daddy and is also starting to pronounce letters but thats it the rest is chatter. I say mum to him and he just laughs, I know he can say the letter m but I think he is tormenting me and I know there are alot of years of that ahead lol.

He's Home (Review of 2009)

I have to say having Maxx at home was scarey enough but to have him home on oxygen just scared the bejeezus out of me!!!  I don't think I slept the first night home and even though he was connected up to an apnea monitor it still wasn't any comfort, not to mention it was over 40 degrees C also.  I mean I had nurses and Dr's looking after my boy for 153 days and now it was just us....what happened if he stopped breathing, what would we do, oh hang on they tought us first aide, oh please if he stops breathing all that first aide stuff has gone out the window and shear hysteria has set in!!

Nathan and I took turns to have cuddles, not to mention nanna it all just felt sereal like someone was going to come and take him back.  It was fantastic not to have someone stand there and look over your shoulder watching what your doing, telling you it's time to do this and that. 

I'm not sure if I told you but we are currently living with my parents as we are building a house.  That night Maxx and I slept in the loungeroom with the airconditioner going it was just too hot to have him in our bedroom.  I slept on the couch and he spent the first night in his bassinet, we actually I lay on the couch and he slept lol.  The first time his alarm went off I nearly pee'ed myself, I don't think I even took a breath until I had my hand on his chest feeling it move.  It went off several times during the night so least to say I didn't get alot of sleep, but he on the other hand slept through the night and this habbit continued to this day....very very spoilt!

He was such a good baby, he never cried, loved a chatter, beautiful, loved his bottles and did I mention beautiful!  Once a month we had to go to Monash to see his Respiratory Specialist, where he would be tested on and off his oxygen to see how he coped and to our surprise quiet well.  I have to say though everytime his oxygen was turned off my heart would just stop and even though he was fine it was just a mothers feeling that I didn't want him to stop breathing.  At the end of his first visit we were told to take him off oxygen for 30 mins a day.....say what....OMG I will be home alone and the nearest big hospital is ages away......oh quick pass me some of that oxygen.  The first couple of days I just stared at him everytime he was off, the world could of stopped but I wouldn't of known.  The next month he had his test again and did better than last time, this time he was to come off 1 hour twice a day....can he do this I mean this was a baby born with no lungs, only been out of hospital for 2 months and you want to take him off for 2 hrs a day!!  But then were told in 2 weeks inrease it to 3 hours off if you think he can cope....huh so in other words if he doesn't turn blue give it a whirl!

Well it turned out that everytime we went he had to be off more and more till it got to the point he only had to be on it at night.  Well we had moved to M buy then and the nearest hospital was a long way away and now I had to have him off all day.  That kid proved me so wrong, not once did he struggle, not once did he turn blue.....yes he got very tired but he showed all of us what he could do, just like he did in the hospital when he wanted that tube out of his throat.  After the 5th month of being home we had to do a overnight test at home with his oxygen turned off.....if my good friend B had of lived close I would of gone and got all her sedatives.  We set the machine up so it would record his breathing patterns, attatched the cord to his little foot and crossed every part of us we could.  If his oxygen dropped into the 80's for over 3 secs and it continued to do so then we were to stop the test and turn his oxygen back on.  I tell ya if I could of fitted into his cot I would of slept with him, I just wanted to sit there with my hand on his chest but knew I had to let him do it I mean he had all the right machines on him to alarm us if he did stop breathing, but what happens if they don't work.....ok ok calm down.  Again he said enough was enough I want this oxygen off altogether....he blitzed it!!!

I got a call a few days later to say take him off it, he doesn't need it anymore....I was so excited but crapping myself at the sametime.  Thank god his Dr let us keep his oxygen cylinders here for a few months but the day they were picked up we knew we were on our own.  The one thing that surprised us about all this was we were told that he would have to be on oxygen unti he was probably 2 yrs old and by 9 months or 5 months corrected he was off it all together.  To be able to go out without dragging around an oxygen cylinder or have people stare at him with his tubing across his face was the best because now I had a baby that no one knew was a prem....he looked like a normal bub.

Happy 4th Birthday Chloe

Mixed emotions today on the anniversary of our baby girls 4th Angel day and also the 1yr Anniversary of the Black Saturday Bushfires and for those that remember we live in one of the effected area's, infact the town was wiped off the map.  But our mind was on her today.

Normally for her anniversary we would go down to the beach and throw in flowers for her but today was different.  We now live in the mountains so have no beach but we do have Stevensons River which flows from the top to the bottom of the mountain so we found a quiet place and threw some flowers in and spoke to her.  We both had a bit of a cry, hugged Maxx and came home.  I still wonder to this day if there was anything that hospital could of done for me, especially knowing the same thing happened when I was having Maxx but they put in a stitch, but at F hospital they didn't even do a scan or a internal to look at anything.

I often wonder what she would look like, would it be like her little brother or different all together.  Would she have the same personality as her mummy (poor daddy) or would she have her own little attitude.  She would be going to kindy this yr and starting school next yr and I think the school bit emotional wise is going to be the heardest thing to deal with.

As I mentioned earlier we also went to the Black Saturday Memorial Service.  Can't believe it's been a year since so many lives changed forever.  We bought up here 3 yrs before the fires, infact we decided after we lost Chloe that this would be the place to change our lives.  Marysville was beautiful, until you saw the place for yourself you can't describe it.  These were some before photos


http://www.travelvictoria.com.au/marysville/photos/


Anyway we had just got Maxx out of hospital at the end of Jan 2008 and as I hadn't seen the house since it was at frame stage, then everything happened and I was hospitalised for 7 weeks before I had Maxx.  So we had decided that on the 7th Feb my parents and ourselves would go for a trip up as it was 2 weeks off handover, but we soon saw the weather was going to be between 43-46 degree's C or 109 - 115degree's F and thought no way are we taking Maxx out in that heat........that little boy could of saved our lives.  Later in the afternoon we left Maxx with my parents and went down to the beach to throw in some flowers for Chloe, when we got home Nathan got a call from one of his team members had left a message on his phones saying that she is safe and had got out....we had no idea what she was talking about until we saw the news......she lived in Kinglake which was an hour away from Marysville.  We got on the CFA ( Country Fire Authority) website to see where the fires were but it was so slow to load or would just drop out.  Eventually we got onto the site thinking all was ok but soon to learn the site was so far behind that Marysville had been burn't down whilst the site was saying all was ok.  All night we were listening to the radio, looking online and listening to the news when Nathan came in as he had been listening to the radio in the car and said Marysville is gone, the whole town is gone, but we just wern't sure as the CFA website said the fire had gone around it.  It wasn't until Nathan got a phone call from a neighbour who had a holiday home next to us and told us the whole town and surounding towns we gone, totally burn't to the ground.  He couldn't tell us if our house was standing as he too decided not to go up there that weekend but had got word from people he knew up there.


We some how found out later down the track that our house had survived but until were were allowed back in 6 weeks later we had no idea.  We we were allowed back in we were in total shock of not only the damage of the town but when we arrived at our house we just stood there in amazement........our house was in one piece with a few broken windows and some bubbling paint but every house around us, on either side of us, behind us all gone.


Someone was watching over us in 2009.

Bit of a Ramble

Just a break from the catch up.

For those that don't know I live in an area that was effected by the Black Saturday Bushfires.  This week I have been down at my parents whilst N is away in Sydney for work.  I have enjoyed it so much, just to be able to see different colours again such as the sea, normal coloured tree's etc.  Unfortunatly the place we were suppose to move to last year is not the place we are living in now.  The houses are gone only to be replaced with new ones or non at all, the tree's are a shade of black with the green growth returing but still so morbid.  You look out the windows everyday to the same view and find yourself playing sot the tree with the new growth or the one that didn't make it......sad yes I know but there is nothing else to do.  The shops are gone with nothing to replace them a year after it happened and still no sign of it even starting.  The nearest proper town is 35mins away down the mountain and around the windies and I am talking car sick windies where you pass logging trucks that almost try and push you along if your not going quick enough.

[caption id="attachment_315" align="aligncenter" width="242" caption="Black spur. Goes for approx 35 mins"][/caption]

 

Going to a big shopping centre is like a day out that you so look forward too.  I miss the Peninsula and I think since having Maxx I have realised how much you do need family around just to help out, even if it's to take him for a few hours so I can do some things for me or things in general.  It's just so lonely up here and I think because we have only been here since May 2009 we're still the outsiders.  I honestly didn't realise what it would be like moving to an area like this and I sometimes get jealous of my husband being able to get in the car every morning and go to work.  He's going to think thats a weird coment as he would love to stay at home but it's the issolation that effects you.  I just think my heart is on the Peninsula and always will be.

This was Marysville before the fires: http://www.mix.com.au/shows/thebunch/photos/maryville-before-the-fire

[caption id="attachment_318" align="aligncenter" width="300" caption="Before the fires....main st"][/caption]

The mountain where I live alight

Photo's of how it effected the town after the fire went through:  http://tools.weeklytimesnow.com.au/photo-gallery/photo_gallery_popup.php?category_id=1851

[caption id="attachment_319" align="aligncenter" width="300" caption="Part of the town after the fires....the whole town with a population of over 600 looked like this."][/caption]

 I will talk more about all this later with alot more photo's including how it's coming along now and I must say it's great seeing alot of houses being rebuilt.

Anyway it's been great staying with my parents and giving me a slight break from Maxx and as much as I love him and I hate saying or admitting I need a break because I tried so long to have him.  I am scared that something will happen to him because I even think it, but I feel like I sound ungreatful.  N tells me I'm not but it's always in the back of your mind.

I'm heading back home tomorrow, just hoping Maxx survives the 2 hr drive poor kid.  So can't wait to see N as he arrives home from Sydney tomorrow.  We have the one year anniversary of the Black Friday Fires on Sunday with a memorial on the oval.  It's going to be a very hard day for alot of people and even though we hadn't moved into our new home when the fires went through, I am hoping we can be some type of support for those that were there.

Birth to home

Well as you know my little man was born at 25 weeks weighing 845g.  He was doing really well for the first week and a half, went from a ventilator (tube down the throat), to CPAP (prongs in the nose) which is fantastic for a baby who was virtually born with no lungs.  Unfortunatly he got tired and caught a bug.  This then lead to several more bugs and then pneumonia, then his lungs started to collapse so he had to be put back on the ventilator with his oxygen continually being turned up.  Every day one of his lungs collapsed, then one would re inflate and then collapes the next day and so on.  At one stage his oxygen was on 100% which means it can't be turned up anymore and most likely could lead to brain damage, brain bleeds, hearing being effected and eye sight as well.  We were called in twice to say goodbye to him.  You would leave him at night and he was good only to ring in the morning and he had had a bad night and gone down hill.  I remember after one call we got up straight away to get ready only for my husband to pick me up off the floor in the laundry as my legs gave way I was crying that much.

One day one of the Drs told us the only step that was really left was to give him steriods but there were possible side effects with the main one being cystic fibrosis, but we didn't care we just wanted him alive we would deal with anything that was wrong with him.  We signed the form to give the steriods and they were given straight away and over a course of what we thought 9 days.  He almost turned a corner straight away and we thought this was it this was all he needed, but then devestating news....his oxygen started to be turned up again and he caught another infection, I'll be honest I thought that was it, I thought there was nothing else they could do i just cried and cried.

They decided to bite the bullet and pull the breathing tube as it had been down his throat for 6 weeks and they knew it would be full of gunk so they said it might help with a new one and as much as they don't like retubing a baby as it causes dramatic stress to them they thought they would pull it out, but then made the choice before they did that that they would try him on a less powerful breathing maching and see how he goes and bugger me he started improving, it was almost like he said about bloody time you put me on this other machine.  Before we knew it a few days later they pulled the tube out which I must say scared the crap out of me.  We were told not to expect him to last as he will probably get tired but we will give it ago and see how long he can last..... it was like he stuck his finger up and said I will show you and he never went back to be tubed and just had the prongs up the nose.  It was almost like he was just saying about time that's all I needed.

He started to grow nicely, graduating from an incubator to what they called the big boys bed or open cot.  I remember walking in one morning, all the nurses looking at me and there he was in his open cot......I was so excited I had to run out and ring Nathan to tell him.  It was the best to be able to lift him in and out of his cot, to touch him, to hold his hand all the time, for him to look at us without the plastic inbetween us.  Then the biggest surprise was when he moved up bays.  Bays were the rooms they were in.  Bay 7 &8 were NICU, 6 was still NICU but not so dependant then bays 5, 4 were where they still had babies who needed assistance with breathing, or still needing special care, then Bay 3 was called SCN or special care nursery and bay 2 & 1 were OMG we're nearly home!  I walked in as I did every day and he wasn't there, it's the worst feeling ever, the nurses said didn't anyone ring me and that he had been moved to bay 6 and were so exciting for us that after 13 weeks of being in intensive care he was finally on the move. 

We spent several weeks in bay 6 and whilst I was driving into the hospital I got a call saying our beautiful boy had been moved all the way to bay 3, skipping 5 & 4 straight to special care.  For anyone that knows this system or has experienced it you will totally understand the whole thing.  He was now on low flow oxygen which was just normal air flowing through his nasal prongs and had to have times off air altogether to get his lung strength up.  This went on for a few weeks only for him to catch influenza off someone and we are tipping a staff member even though we were questioned and almost acused of it.  After being in hosp that long we weren't dumb enough to put his health at risk, so that put his coming off oxygen behind whilst he got better.  Another few weeks went past, again as usual I walked in and nope he wan't there OMG he had moved to bay 2 and his next step was to a level 2 hospital and closer to home.

After 17 weeks and 2 days before Christmas we got come fantastic news....he was being moved to a level 2 hospital which was now 45 mins from home and not the traveling of one hour and 10 mins one way.  It was such an emotional time to say goodbye to what had been our family for 17 weeks, we made some really good friends and that includes other NICU parents and nurses.  The nurse were our strength and without them I know sitting there day by day I would of lost it alot more than I did.  They so don't get recognised for the work they do and I have to say they are my hero's.  I travelled in the infant transport ambulance to our new home.

For the next month or so my day was the same, in to see my boy, spend the whole day with him just holding him and never wanting to let him go.  Before he was allowed home he had to do what was called 'air tests' and that mean't he he had to last off oxygen with his own oxygen levels staying at a certain %.  He failed the first one, thena week later he did another one but it wasn't good enough, the following week he passed but his Repiratory Specialist wanted him to do one more to be safe.  Now we always did the tests when he was asleep because that way he wouldn't fidget around.  The fourth test started off well but he woke up and I started stressing the the max and got all upset, but you know what..... it was the best he ever did, he kicked arse.  That was the tuesday and then on the friday his Resp Dr came into see us and we got the news we had been so longing for.......he was going home!!

Password

I have password protected any pictures that i put on here, which I think you can understand why.  If you would like the password please email me at shazld@yahoo.com.au.

Pictures of our little boy

Well this is my little man. Thought I would include a few pictures and then tell you a little of out travel from the last post of when he was born.

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  Click on Pictures of our little boy to be taken to another blog that is password protected.
  

So they were his pictures from Birth to the day we took him home. It was all surreal to have him home and to be in total control of looking after him.....finally we were his parents fulltime with no one looking over our shoulders.

Ok where is the manual!!!