She finally made it

Wow what a year! My baby has finally turned 1. What a rocky road we have had to get this far. I never even imagined 1 year ago that we would've even made it to her 1st birthday. It's been such a journey for everybody involved in her life, but especially my family. My kids have been through so much with their little sister and they understand so much more than what we think. Right from the start they have been there, they have cried at times because it used to upset them. When I showed Nimeesha (my 5 year old) the little video I had made she started crying. She said it was just so sad. Their sister means the world to them and if anything happened they would be so devastated.
Her birthday was a good one. We didn't have everybody there we would have liked to. A lot of the family had flus and chicken pox so it was just the people that weren't unwell. She managed to stay awake through most of her birthday and conked out towards the end. I think she was wondering why there was so many people looking at her but they weren't dressed in blue scrubs or had doctors coats and stethoscopes.
Antz was great and he thanked everybody for all the help and support they've given us and he thanked our kids (and made them cry!). The kids have probably been through the most this year. Getting shoved around from person to person, getting dragged up to Auckland, not seeing me or their sister for sometimes weeks.
I want to thank all of the people that have helped us out this year and haven't judged us as parents, because we couldn't have been able to do what we needed to, to be with Trinity-Storm without the help of others.
She is still a very fragile baby and will probably be like this for the next few years, so please bear with us if we ever turn you away or turn down family events. It was so hard going to starship and watching her fight for her life, she fights for her life everyday, but that was especially hard when we were so close to the heavens gates. All of the praying and thoughts that everybody sent her definitely worked, and the fact that she is a fighter and will never ever give up.
I LOVE YOU MY DAUGHTER AND SO DOES DADDY, WE WILL NEVER GIVE UP ON YOU AS LONG AS YOU NEVER GIVE UP XOXOXOXOXOXOXOXOXOXOXOXOXO

October 17th 2009

Well it's been a while since I've updated the blog and people have been asking me how she is. So far since our last hospital visit she has managed to stay well enough to be at home. She keeps on getting a cold but it comes and goes.
She is putting on weight slowly, she is now 5.035kg so just over 10lbs. She is 2 weeks away from turning 1 so she is still very small.
Developmentally she is doing 5 month old things so that is quite a big step for her. She is trying to move around on the floor so it won't be long and she will be crawling. I'm not looking forward to that because she will need oxygen tubing extensions and that can hinder the flow of oxygen to her. That also means she will need to be watched very closely because she is so small she is going to fit in small spaces. But at least we can follow the oxygen tubes to see where she is.
The other kids are happy to be back home and going to school. They miss the ronald mcdonald house school though because of how relaxed it was and the 1 on 1 attention they used to get.
We have slowly started to unpack our boxes from when we moved in here. Over the next week it should be all done then we can park our car in our garage and won't be tripping over boxes in the hallway.
We are also planning Trinity-Storm's 1st birthday and baptism. It is going to be very small in comparison to my other kids 1st birthday's. 2 of the kid on Antz's side of the family have got chicken pox at the moment so their families won't be able to come. Even though it's 2 weeks away they may still be carrying the virus and we can't risk anything with her. People just don't understand that her immune system is basically stuffed. I don't care if I sound mean because my daughter's life is more important than somebody else's feeling. Like it or lump it I say.
I will post some more pictures after her birthday

25th September 2009

After only 2 days of being at home with our little girl we were heading straight back into Wellington Hospital. She had a really runny nose and had a cough. They wanted to make sure she didn't get worse and to keep a close eye on her.
The consultant in Auckland told us to keep her oxygen on half a litre but the nurses kept trying to turn it down. I had to explain it over and over again why. It is too fast too soon to turn it down she will get sick all over again.
The good news was that the doctors said her lungs were doing great and she didn't have any wheeze in her chest.
On Sunday the 27th we were allowed to go home again and so far so good. She still has a runny nose and a bit of a cough but isn't as bad as the last time. She is really enjoying being at home and I'm glad it is school holidays because we can just lock ourselves in the house.
I've told everybody that they need to ring first before visiting. No kids allowed. No colds, coughs, sneezes. Some people don't understand why I'm being so picky but my daughter's life depends on staying well. A simple cold is enough to kill her and I saw her die twice and I am not about to see it again.

Home 22nd September

Well after the weekend and trialling my baby on NG Feeds (feeds going into her tummy via a tube down her nose) the doctors decided that it wasn't going to work for her and the safest thing to do was to feed her with the NJ tube (further down into her bowel). Today is also the day we were flying back to Wellington.
After packing up all of our gear we left for the airport around 11am. It was just me and baby that were flying back and Mum, Antz and the kids had to drive back. The flight was pretty good but Trinz didn't like the landing. We got back to Ward 19 of wellington hospital and it was like we had never left. The doctors and nurses were so happy to see her and couldn't believe how great she looked. They asked if we had given her fertiliser because she had grown so much.

The next day she was doing so well that we were discharged with a lot of medication and told to go back if we were worried.

Saturday 19th September

Yesterday we had a meeting with the Consultant in charge of Trinz care here at starship hospital. It was really good and he answered all of our questions. We asked him about her outgrowing her lungs. His reply was that to his belief if she was going to do that she wouldn't have even survived neonates and wouldn't have been able to come home. If she had survived neonates and came home she wouldn't be on low flow oxygen but on cpap. So that was a huge relief to us to hear that.
She is going to be coming back to starship in about 3 months time to have a bronchoscopy done, where they put the camera into her lungs to have a look and see the extent of all the damage that has been caused by her infections and pneumonia etc etc.
If all goes to plan over the weekend we will fly home on Tuesday. Well not home but we will go back to Wellington Hospital with a whole list of new medications to keep her well.

Nearly Home

Well it looks as though we may be going home sooner rather than later. We have a meeting with the doctors tomorrow to discuss her plan of where to from here. We spoke to a team of doctors today that were really helpful and the main question that Antz wanted answered was about her lungs. He asked them about her outgrowing her lungs and he said if she was going to do that she wouldn't have even made it out of neonates. So that was some good news for us. So our plan is to watch her over the weekend with the food going back into her tummy and not into her bowel like it has been for the last 3 weeks, to see how it goes. If all goes well then she will probably stay on the feeding tube that goes down to her bowel. This will stop any chances of the milk getting into her lungs and hopefully keeping her clear of any chest infections that she may get.
But we will be going back to Wellington hospital and not