Trinz and her sister and brothers

First cuddles with Daddy at Starship

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.

Trinz

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.

Trinity-Storm: Nearly Home

Trinity-Storm: Nearly Home

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 home straight away. I imagine we will only be there for a couple of days because she is doing so well at the moment.

9th September 2009

My daughter is now having drug withdrawals from all of her medications she has been taking and has only slept for about 2 hours max in the last 2 days. She is now off her ventilator and is on CPAP. She should be going to the ward over the next couple of days. When she goes to the ward 1 of us will stay with her overnight.
My kids are loving it up here and they actually like going to school. We took all of them to Kelly Tarlton's Underwater World yesterday. Nimeesha was too scared at first to go near the glass. The big sting ray's were scaring her. I had to go up to the glass and put my hand on it to show her. I think they are all feeling relieved because they have seen their sister and are close by to her with us all together. My mum is still here with us but she won't go home until we go home or until she knows she is better. Antz will fly home this weekend and then bring our truck back up here. At least then we will have a car here and can go and find a cheaper supermarket and take the kids to the Otara markets (we didn't end up going last weekend).
I just found out today that 1 of the baby's that Trinity spent her first few months with in Neonates died yesterday. She had brain injuries. It's so sad for those babies that don't deserve that, their attackers need to be put away for a very long time, but the reality is that most of them get away with it because they can claim they had post natal depression or try and plead insanity. They need to change the law when it comes to the killing of children. The ones that are really abusive always fall through the cracks.
But on a brighter note my daughter is improving every day and I can't wait to take her home.

5th September 2009

Well 1 week and 1 day later and we are still at Starship. My girl has had 2 really good days. She is not ventilated and is currently on CPAP. She is doing really well breathing and if she behaves today I get to have a cuddle.
We took Cassius to Auckland Zoo on Thursday and it was so massive. We were there for 3 hours but it still wasn't long enough!
Our friends Adrian and Brenda arrived last night with Devante and Nimeesha. They turned up at about midnight so we quickly took them up to see baby. They were amazed at the difference in her.
Tonight we are all going to the Vodafone Warriors rugby league game. Me and Antz got given 4 tickets so we only have to pay for 1 of the kids.
We are off to the Otara markets shortly to go and get some bargains.
I will update again soon.

2nd September 2009

Well another day and we are still at Starship hospital. The tests they did on my daughter have shown that she has a cold. But for her it is just as bad as a healthy child getting swine flu. It has really knocked her pretty bad. She is currently on some steroids to try and strenghten her lungs. But her last couple of x rays have shown her lungs have gotten worse and not better. Fingers crossed they improve by the weekend (it can take a few days to show any improvements). Her oxygen saturations today have not been that great so fingers crossed the steroids kick in soon.
I will try and keep this updated as best as I can. Thanks to everyone for all the support and kind wishes you have been sending to me and Antz and our family at this time.