i remember the first time i saw my DS#1 he was 18 hours old and heading in to surgery. one of his nurses commented to me how big he was compared to the other babies in the bay with him, they were all VERY early premmies and he was triple the weight of some of them having been born at 42wks.

i felt so alone while in hospital recovering, i was moved to a private room, i couldnt bear to hear other babies crying, didnt talk to anyone while i was there except about julian, our friends were great for the first few weeks but most of them dropped off the scene and we never heard from them again, i cryed the whole way home the day i was discharged and had to leave him there, my mum drove me home and as soon as she left i drove myself back and stayed most of the night, wondering corridors etc untill DH came on got me.

this was our routine, 7am DH would go to work, i'd go to the hospital, 6pm DH would finish work and i would pick him up and drive back to the hospital, we would stay till 1am, 1 hr drive home, sleep then do it again.
so julian spent 45 days in NICU, had 2 major surgeries while in there, i finally got to hold him at 3 wks old.

im unsure whether im "over it"???? i go through phases (like now) when it really bothers me and i cant stop thinking about things that happened, but most of the time i dont think about it.

Julian is 8yrs old now, he's up to double digits for the number of surgeries that he has had and only a few of those have really worried me. DH and i have had to become really desensitised to the emotions that occure when ur child is in hospital, in reallity we have to hold it together for him, at his age now there is alot of fear involved, he knows to much about hospitals, pain etc, and also there have been times when a quick decision has to be made and if we are emotional while dr's are explaining things we cant make that decision properly, dont get me wrong, we always show emotion to Julian, positive, always positive, but we dont lie to him.

anyway, i dont think that him being in NICU back then effects my relationship with him now, he loves to talk about it and look at pictures of himself in a humidicrib, im glad i can answer his questions about things, but it sticks with me for so long afterwards.....

id love to hear from anyone else who has had a full term NICU bub.

i know im not the only mum on here who has been in this situation.

sure, of course you can ask,

Julian surgeries while in Nicu were,
#1- repair of a mylomeningocele (repair of spinal cord)
#2 - insurtion of a shunt ( drains fluid from brain to tummy)

then after nicu up to 1 yr

#3 tenotomy (cut tendons in the feet)
#4 shunt revision ( this was the one that caused damage)
#5 shunt revision ( only two weeks since the last one)

then had 4 orthopedic surgeries in yr 2

in year 3 had 8 surgeries, long hospital stay again (one of those was also life threatening, we actually asked for another dr opinion as the first dr was completly incompotent,)

at 4 years old he had none

at 5 he had 5

and b/n 6 and 8 yrs he has had 14 surgeries, all orthopedic, all on one foot, and that is still ongoing.

next year there are three planned, but DH and i havent decided if we will go ahead with one of them, we still have a few months to decide on that one.

so sorry to hear about your son, im not sure what to write but i can only imagine how you must feel every day, what surgery did zac have? hope you dont mind me asking...

thankyou so much for sharing zac's story,
you have done a wonderful job with your web page and keeping his memory going,
heartkids is a fantastic organisation and it sounds like you have a very supportive family.

Reading your story was very sad.
How is Julian now? I bet he is such a brave, spirited and amazing little boy.

My second son was flown out of the hospital where he was born the same day. I did get to see him in the huge neo cot thing they transported him in, but we didn't meet and I didn't get to tell him I loved him. Three days later I got to meet him properly in NICU at the Mater Mothers Hospital in Brisbane. I was transported down there with the RFDS also as a patient and stayed on the mothers floor. It was so nice being in the same hospital as him even though he was 2 floors down. At 2.8kg he was the biggest kid in there also because the others were all early prems. I wish I had taken photos but at the time the last thing I was thinking was to get out the camera. It was horrible being in hospital without my baby and it was also horrible that no one sent flowers or cards because they were too scared to. No one wished us congratulations either.

A few days after that a bed became available for him in Special Observations on the cardiac floor of the childrens hospital which is across the road so he moved again. After being 800km's away to start though, it was nice to have him in the hospital next door!! Elliot had his first surgery about an hour after he arrived in Brisbane. I had to consent to it over the phone because my son and husband were still in the air on their own flight to Brisbane. I was like a zombie and did not understand my sons condition nor did I understand what I was consenting to... but I knew that it was to save his life so I told them to do whatever they had to do and that was the height of my understanding at the time.

He had his second surgery at 7 days old and he spend the next 6 days in PICU with an intensive care nurse one on one around the clock. His 3rd surgery was at 5 months old - but that was more like a ''procedure'' then a surgery. It was still under general but not via the chest but rather via a catheter and into the heart that way. He is having another open heart surgery though in the coming months.

I totally understand about being desensatised. Nothing shocks me anymore and sometimes I feel like a bad mum because I think I should feel more emotional then I do. For example, my biggest struggle is that I use to be upset for DS1 when he had his immunisations 3 times a year and like any mum it use to make me feel sooooo sorry for him and cry. DS2 was having 2 needles in his leg every day for about 3 months and I felt nothing. He cried every time/every day for the first few weeks and I didn't feel like I did when having to take DS1 3 times a year. I don't understand why I feel like this... all I can put it down to is desensitisation. I am scared that something will happen to Elliot on the table during his next OHS but as far as the actual procedure goes.... it's more of a been there done that feeling that I just want to get over with rather then what I figure most parents would likely feel in the same situation. Anyway... I can't explain myself properly but I do know what you mean by that.

Well, my post is getting a bit long but I wish you all well.... I certainly don't have any advise but I hope there comes a time when Julian is as ''repaired'' (I understand our kids are never cured) as he can be and all this is over for the poor little guy.

Yes, I so so so know what you mean!! A perfect example is that DS2 has bronchitis at the moment.... it's only the second time he has been sick but when he does get sick he goes all out and does it in style!! His first cold landed him in hospital for 5 nights!!
Yesterday we took him to the GP re the coughing and he freaked out and directed us straight to the ER because DS kept turning blue. I know that turning blue is a likely result of his current heart condition and I guess the coughing is putting an extra load on the already compromised pulmonary artery.

Anyway... we were send home from the hospital and our cardiologist told us that turning blue is fine and to expect more of it. I am pretty cool and calm about it because they are, but when I told a few of my friends they were like HOLY COW... how can you be so calm when you are talking about him going blue!! They said ''I would be a total mess if it were me!!''

The other day I mentioned to the girls at Mothers Group that our docs talked about the possibility of Elliot entering into right ventricle heart failure.... the girls couldn't believe that I could talk about it so calmly!! Sometimes I can't either but I guess I just know that all that can be done is being done and there is no use getting hysterical about it IYKWIM.

Maybe it's all part of being desensatised.... I think when these things become ''normal'' you just get use to it. Maybe like you said, because you worry ALL the time, it's exhausting and on a regular day there is just nothing left.

Our case wasn't anywhere near a severe as ^^ but DS was born full term (3.9 kgs) and was taken into SCN after 3 hours due to breathing issues. Once taken to the SCN they found his blood sugars had dropped too low also.

He stayed for 5 days in the SCN on a drip for the blood sugars, and numerous other cords for his O2 stats, breathing, and Antibiotics. He has a chest x-ray at 3 days old and they found shadows on his lungs. They ended up telling us that he "probably" had developed pneumonia in the womb, but there was no real answers for his issues.

The thing that I still vividly remember is having the BIGGEST baby in there. They put DS on the smallest wall in the nursery on his own, with all the prem bubs on the other wall. My hardest day was when they were ready to transport one of the bubs to a new hospital, but something happened first and they started resus in the space beside DS.

We've had one surgery since then at the Mater hospital, which wasn't related to his initial problems, but I still wonder what it's like to spend that 1st night in hospital with a full term bub.

hope elliot and brayden are well and didnt have to stay in hospital.

i think that no matter how long or short a nicu stay is, or how complex the condition/s that the kids have any hospital stay is trumatic for the whole family. and it can happen to anyone, i've just finished reading your blogs and they were wonderful, not only to document what you can for your own and family/friends sakes to stay informed but also to raise awareness,

im gunna try and start a blog for my family and friends, just havent got around to it yet. i find that with two special needs kids i am constently repeating myself,

DH and i have had many many talks over the years on how to raise the kids, we are very open about their conditions and have chats about things in normal conversation with them, as far as they are concerned they are normal kids, they want to do the same things as everyone else and we do our best to help them achieve that, we are constantly thinking outside the square and working around problems. for example, this year julian wanted to go rock climbing, easy enough except that he is paralised from knees down and extremly poor muscles from waist down. he did manage to though and once i get my blog going i'll put the video on there.

any way thats all from me for now,

Wow Lisa, 3 in NICU... how incredibly difficult that must be for you - then and now. Your babies chose you because your so strong. Hats off to you, your an inspiration.

Wow, shouldn't they be contacting you? That is very easy to forget otherwise, they should be on top of it IYKWIM. Hopefully you can get in January.... good luck with it and keep us up to date.

most of the kids appointments i can book when leaving the last one, but dannika's renal dr doesnt do scans at the hospital she goes to so i have to get them done at julians hospital. then just to make it more interseting for me julians hospital only book up to 3mth in advance and dannika has 6mthly scans so i have to remember to book them in. or completly forget which is what i did this time.