Quick Post! November 29, 2007

This is just a quick post while Dylan has one of his short naps.  We are off to Sydney tomorrow for a wedding and will be returning Sunday night so I’m not sure that I will get a chance to post between now and next week.  Wish me luck getting on a plane and trying to entertain an 8 month old.  Last time we went to Perth when Dylan was 3 months old and trying to feed him and hold him in a squashy seat on a plane was a nightmare.  The flight to Perth however was 3 hours so at least it will be much shorter to Sydney. 

There isnt much happening in our lives.  Dylan is sitting up unassisted for even longer periods of time and he is also moving around the floor ‘commando crawling’ alot better now.  I cant remember if I mentioned but he will be assessed next week for his development by the Royal Childrens Hospital so I have been trying to give him plenty of practise so that they can tell me that he is ‘normal’ for a cardiac baby.

I believe Dylan has started to stir so I better go and see what I can finish packing before he wakes up.

75th percentile! November 26, 2007

Dylan had his 8 month checkup with the maternal health nurse today.  He now weighs 9.68 kg and his height is 72cm.  This puts him in the 75th percentile for weight and 70th percentile for height. This is great for a baby with heart problems.  Babies affected by a heart problem are usually small and underweight but Dylans weight indicates that he is healthy and growing well.   We have an appointment with the cardiologist on December 18th so hopefully all his tests come back as normal.

I am following quite a number of blogs at the moment of parents with CDH babies.  In fact I think I may be an addict.  Its quite strange really.  I have lost one son to CDH and I spend hours on the internet researching and reading blogs of those affected by CDH but I also have a surviving son with a heart defect and I know so much less about Dylans heart problems than I do about Alex’s CDH.  Maybe its because Alex didnt survive and its my way of dealing with his loss.  Im not exactly sure why I’m so obsessed.  Anyway its so great that so many more babies are surviving CDH.  It makes it seem as if the doctors are learning how to beat this horrible defect.  I know that the sad reality is that there has probably just been a lucky streak and soon it will end.  I remember when we visited the Royal Childrens Hospital when I was pregnant with Alex and we spoke to a surgeon there.  He told us that they once had 43 CDH babies survive in a row but then they had 4 or 5 die.  I hoped we would be part of that ‘lucky streak’ but we werent.  Our baby died and we have now become a statistic.  It just sucks. 

Going back to work November 20, 2007

I am officially on 12 months ‘unpaid’ maternity leave which finishes in March but Ive been fortunate to be paid all my accumulated annual and long service leave at a reduced rate of pay so financially it hasnt really hit us.  This runs out at the end of December so I know it will be a struggle unless I go back to work.

My boss phoned me yesterday to ask me what my intentions were for returning to work.  I told him that I did want to return to work but am not sure when.  We agreed I could work part-time doing 3 days a week and job sharing with someone else.  I really dont know how I’m going to leave Dylan for even those 3 days.  First of all I am still breastfeeding so that in itself presents a problem because although I have tried to bottle feed Dylan doesnt seem to drink much from a bottle.  Secondly I’m just going to miss him so damn much.  I dont know if I should return to work at all but the money is good and I think it will be hard to find something part-time that pays as much but is the money worth it when I am going to miss out on so much of Dylan growing up?  Ive loved being at home with him even if it does send me a bit loopy sometimes. I am really dreading going back and know Im just going to hate it.  Its almost an hour drive to get to work so thats also a big turn-off.  Anyway I have decided that Im not going to think about it much more for now. I told my boss I would phone him before the end of the year to let him know when I would be back so I have at least another 4 weeks to think it through.  

I am buying a couple of lotto tickets this weekend and hoping that I win so I dont have to worry about work anymore.  Wish me luck!

Some photos…. November 18, 2007

Dylan learning to sit on his own.  He hasnt quite mastered it yet but he is getting there.  

Some more recent photos I downloaded.

Santa November 17, 2007

You know how sometimes there are things you couldnt wait to do before you had children.  I used to stand at the shopping centre and watch the kids lining up to take their photo with santa and couldn’t wait for the day that I had a child of my own and I too would be lining up and waiting for our turn with santa.  Well today was the day.  Funny really because Ive always hated christmas.  Not what christmas represents but all the christmas traditions as well as the running around, busy shopping centres and general craziness surrounding christmas.  Christmas means so much more to me now that we have children.  It started to mean more to me last year because it was the first christmas without Alex but even though it was a sad time we were able to share in some christmas traditions with him.  Each year the cemetery where he is buried hold a service to remember all the children. They sing christmas carols and we place messages for our children on little decorations to hang on a big christmas tree that they place in the childrens section of the cemetery.  It was really beautiful last year.  They also gave us lanterns and last year we went to visit Alex’s grave afterwards and although it was quite dark (the service is held in the evening) it wasnt the least bit scary.  They are holding another one this year and although we are off to Sydney for the weekend and we get back that afternoon we might just make it in time to go again.  I cant wait.  

This year we have Dylan in our lives too and I’m enjoying and looking forward to Christmas again. It was our turn today.  Our turn to visit Santa.  JP was even more excited than I was.  Quite cute really to see a man excited about santa. When we got there there was huge line so we went and had some lunch, did some shopping and went back at the end of the day when it was quieter.  Dylan was having a good day today.  He was happy most of the day even though we spent 6 hours in the shopping centre.  When we put him on santas knee he looked up at him and just laughed at his beard and we got a great photo.  As we turned away I think Dylan got the fright of his life because he thought we were leaving him with the big scary santa and he started bawling.  When you think about it…santa is pretty scary looking.  Its no surprise that babies cry when they look at him.  EVEN I get scared when I look at him.  I think I may have traumatised him for life.  I dont want him to hate christmas like I did growing up.  Maybe thats what happened to me.  Maybe my parents took me to have a photo with Santa……

Unlucky number 13 November 13, 2007

Its exactly one year ago today that we found out about Dylan’s heart condition.  Some people say that the number 13 is an unlucky number and it has definitely proved to be for us.  We also found out on 13th October 2005 about Alex’s CDH so we try not to schedule any doctors appointments or check-ups on the 13th anymore.  13th October 2005 and 13th November 2006 are days I will never forget.  I cant begin to explain the feeling of being told that your unborn child has a birth defect and that he may or may not survive.  My world collapsed.  If I had to pick the worst days of my life those two days would be it. 

I have read on the internet that by 8 months old 90% of babies can sit unsupported.  Although Dylan can sit for a few minutes in front of his toys he still falls over if we arent there to catch him so strictly speaking he isnt sitting unsupported.  With everything I am hearing lately about different developmental delays in children I am starting to worry that Dylan may not be up to speed with his milestones.  Apparently he should be crawling but he isnt doing that either.  Should I be worried yet ?  We see the maternal health nurse at the end of the month and I know she is going to say something about it.  I sometimes wonder if the month he spent in hospital when he was born (virtually on life support) has slowed him down a little. We are being assessed by the Royal Childrens hospital in a research project they are conducting on developmental delays in children undergoing heart surgery in the first few weeks of life.  Dylan has already had one assessment and will be having another towards the end of the year so I guess the next assessment will tell me more. 

I think my little monster has woken up because I can hear him blowing raspberries in his cot.  Just another lovely habit he has picked up in the last week…..

Feeling better November 10, 2007

Ive had a nasty cold this week which has meant that I have struggled to get out of bed and doing the simplest of tasks such as feeding Dylan or changing his nappy were a real struggle.  Thank god mum lives with us and she was able to help out and allow me to sleep when I needed to so I could recover and regain my strength.  She truly is a godsend.  I still have a cough but am feeling much better.  Dylan has had a cold too but seems to only be mildly affected and his snotty, runny nose doesnt seem to bother him nearly as much as it bothers me. 

My nephew has been out of hospital a week now.  He is also doing better.  He is eating again and gaining strength every day.  He is still not walking properly but Im sure he only needs a few more days and he will be running around again as before.  The only problem now is that he is quite scared of people but that is hardly surprising.  He had nurses and doctors jabbing needles at him for a week and for a 2 year old it can be quite scary when you dont understand why they are doing it.  

JP and I went out for dinner with friends tonight.  I didnt want to go because I am still feeling pretty crappy but it had been planned for months and we had already organised mum to babysit.  It was great night.  Its nice to go out and not have to worry if Dylan is crying, needs to be fed or changed or just entertained.  As much as I missed him for those couple of hours it was nice to be doing something ‘normal’ again.  Its not like we went too far (I’m trying to sound like a responsible parent here!).  It was just a little restaurant across the road.  I didnt want to stray too far just in case…Anyway this couple we went to dinner with are really quite interesting. We always have plenty to talk about.  Tonight the topic of Synesthesia came up.  I had never heard of it before but its a condition in which one sense (for example, hearing) is simultaneously perceived as if by one or more additional senses such as sight. Another form of synesthesia joins objects such as letters, shapes, numbers or people’s names with a sensory perception such as smell, color or flavor. The word synesthesia comes from two Greek words, syn (together) and aisthesis (perception). Therefore, synesthesia literally means “joined perception.”.  She asked me what colors certain letters were and I could immediately come up with colors for the letters she mentioned.  Funnily enough they were the same colors that her daughter sees when she thinks of those letters.  Quite bizarre really.  They think their daughter has synethesia because she pictures colors for letters and days of the week etc and ‘hears’ movement.  Ive done a little reading of the internet and its really quite interesting.  Maybe there is an explanation for my mixed up brain after all. 

Not much happening…. November 1, 2007

Dylan now has 4 teeth with a 5th tooth soon to make an appearance.  He slept 11 hours last night which was quite surprising since he hasnt slept through the night for a long time.  We had a couple of good months where he was consistently sleeping through but when he hit 6 months he started waking for feeds during the night again.  Although Dylan had a great nights sleep JP and I did not.  JP kept waking me every hour to ask me whether I thought Dylan was sick.  He wanted to wake him but I wouldnt let him.  Eventually at 7am this morning I had to wake him because even I was starting to get worried.  Well – he is fine.  He has been eating, pooing and sleeping like a champ.  Today for the first time ever he rolled from his back to his stomach and back again.  He has been rolling to his stomach for awhile now but could never roll back but today he did.  He is also getting up on his knees.  Can you tell I’m excited ? 

My nephew is still quite sick in hospital but showing small signs of improvement.  He still has diarrhea but he is staying awake alot more and has even managed to eat a piece of toast and keep it in.  I will be going to visit him tonight.  The doctors asked whether there were any other bowel problems in the family.  I remember when Alex was operated on to fix his diaphragm that the surgeons saw something on his intestines that they said was not life threatening but may have needed to be fixed sometime in the future.  We chose not to allow them to do an autopsy after Alex died so we dont have the exact name of what it was but Im pretty sure I remember them saying that he had a meckels diverticulum.  It doesnt sound like my nephew has this but I will give my sister this info to tell the doctors just in case.  It seems like he just has a very severe case of gastro and he just became too dehydrated which is why he is taking so long to recover.  They have tested him for all sorts of things including leukaemia but fortunately everything has come back clear. 

It has occurred to me that I havent got any pictures up yet of Dylan so I will try and add one now.  Forgive me if it doesnt show up.  I am new to these spaces and am still working my way around.