31st August 2009

Well we have had a few rocky days and we are still not out of the woods yet. Because her lungs were so underdeveloped when she was born she was always going to have lung problems, hence her chronic lung disease. Some babies grow out of it as they get bigger and some can't cope because they are so small. My girl is super small but she is still hanging in there, and isn't about to give up yet. As her lungs are working harder her heart has to work extra hard. Over the months her heart has been working so hard to keep up with the pressure in her lungs so it has started to deteriorate. She actually went into cardiac arrest on Saturday night and we nearly lost her. They can't guarantee she won't do it again but she is getting drugged up on so much medications to prevent it. She is being kept fully sedated because any sudden movements or changes can trigger another episode off. At the moment she is stable and is coping okay. So for now we are happy with that but we are waiting for more tests and results to be done.

Starship Hospital

Well what a week! Here I am up in Starship Hospital in Auckland. My girl was admitted to wellington hospital on Monday with a collapsed lung yet again. All week her oxygen had been dropping quite low but they couldn't figure out why. Thursday they put her onto cpap because she couldn't cope. She kept on going blue quite a few times. I knew something was wrong. I was up in the Ronald McDonald room when a nurse came screaming in there. I was running so fast I nearly tripped over her! She had gone into respiritory arrest. When I grabbed her hand there was no life whatsoever. I text Antz and just said come now. He rang me and I was screaming at him. He was there in about 5min. It took them 4min to get her breathing again. We were taken to ICU where they ventilated her and kept her sedated. The next day starship flew down to get us. Me and my Mum came up and Antz will come next week. She is stable for now and today she will have lots of tests done to see what's wrong. The staff here are great and I'm happy we have a room to sleep in and 3 meals a day.

August 19th 2009

Well here we are back at home. We've been home for 2 days and it's been great! She has got back into her routine of sleeping all night!!!! But why do I still feel tired? She is on a different kind of formula again and is having solids. It's so funny watching her try and eat because she kinda rolls her tongue when she eats. She also thinks that she has to put her hand in her mouth, so you can imagine how messy it is when she eats. Oh and the food all gets up in and around her oxygen prongs.
I had a very busy weekend while my Mum stayed at the hospital. I was helping out with the wellington rugby league senior finals on Saturday and then Devante's team was in the finals on Sunday. It was a great weekend but very very tiring.
On Saturday Antz's uncle Tupuna Akavi passed away. Very very sad. So he has been busy cooking at the marae every day so the only time we see him is in the morning. We don't even see him come home at night. To top all that off yesterday morning Uncle Tupuna's sister, Aunty Tepua passed away. Very very sad days for the Akavi whanau.
I just wish I could be up at the marae helping out in some way. I haven't even been able to go up there. Me and my girl haven't left the house since she came home. I'm sure the family will understand.
My girl will be having a camera put down into her lungs when she is better to see why she keeps having bronchiolitis and why her lungs keep on collapsing. She has been in about 4 times this winter with the same thing. She may also need to have an operation for her reflux. Just when I thought operations were over for her.

Ward 19

Well here I am again in Ward 19 of Wellington Hospital. My daughter had her hernia operation no problems what so ever and here we are 3 weeks later with a severe case of bronchiolitis. She started getting a cold just over a week ago and we thought she would shake it off like she has done so many times before. But this wasn't to be so. My mum was watching her as I was out at rugby league at the premiers grand final, I was actually volunteering and working on the main gate. I had a text from my Mum saying they had rushed her into Wellington hospital because she was rolling her eyes back in her head, vomiting her feeds up and had no wet nappies. She was so breathless and turning up her oxygen was doing absolutely nothing. So they did an xray which showed her lungs had collpased. They put her onto midline CPAP, which is like taking 2 steps backwards for her. She hasn't been on that since she was at the neonates.
Anyway it is now day 5 and she has been put on Wellington CPAP which is 1 step closer to going home. Her oxygen requirements are slowly coming down and she needs to behave to be home by the weekend.

23rd July 2009

Well we are home after a very short stay in the hospital. Her surgery went ahead yesterday as planned and she had a spinal anesthetic. She was great, she was moving her legs around not long after the surgery and hasn't really complained much at all. She seems to be her normal self and hasn't needed much pain relief at all. She was just tired because we had to share a room and she didn't get much sleep as she kept waking up listening to the other babies cry. When we came home she slept most of the day and was very glad to be with her crazy family and in her snuggly warm bed.

Sunday 19th July 2009

Well my girl had her pre assessment for her hernia operation on Friday. It was a very long process, it took about 1 hour for the anaethetist to read her notes! Anyway there are 2 ways that they could give her anaesthetic, 1 is spinal (kinda like an epidural) the other is general. If she has spinal she is still awake, able to stay on her oxygen but she can move around her arms and I don't think she'd like it at all. If she has general she will need to be ventilated again, they are worried about how long she will be ventilated afterwards before she can go back onto her oxygen. If she gets ventilated then she will need to go back to the neonatal unit. I don't mind if she goes back there though because at least I know she will get the attention she deserves, unlike in ward 19.
We go in on Tuesday night and her operation is scheduled for Wednesday afternoon. We will probably be there for a few days so she can recover properly.

9th July 2009

Just a quick update for everybody. Trinity-Storm has a cold and her stats have been going up and down over the last week. We went to Wellington Hospital on Monday night because the community nurse was a bit worried about her breathing. They did an xray and it was fine so I told them we were going home, they were trying to object, but if she was fine then there was no reason to stay. She got swabbed for swine flu because all the kids that go into the hospital have to be checked. So far no results have come back but I highly doubt she has it.
So far she is still well enough to have her op, we have a pre assessment check next week, so at the moment her operation is going ahead as scheduled for the 22nd.
It is great at the moment because it is school holidays, so there is no rushing to get kids off to school and no need to take her out anywhere. In this weather you just want to stay at home anyway. The 2 big kids have been great with the little ones and today they have taken them to the movies. Antz has been off work because of the weather so it's good to have him home as well (most of the time!!)