Merry Christmas

Wow we made it to Christmas without going into hospital. This time last year we were rushing from house to house and then to the hospital to see our baby on Christmas Day. But this year we got to have christmas at home with her. It was great. Normally we go somewhere else for christmas but this year we stayed at home and my family came over to our house. It was so much better and easier. We had so much food we have only just finished off the leftovers. The dog was really well fed over the last few days. I think she is sick of food now.
On Christmas day our baby decided she would sleep in until about 10am. Everybody had already opened their presents and Nimeesha had already ridden her new bike up and down the driveway about 1 hundred times!! When she finally did wake up to open her presents she was more interested in the paper!!
But all in all it was a great day and so far I think it's been 1 of the best Christmas Day's we have had in a very long long time.
Merry Christmas everybody and bring on the new year!!

Yay finally some results

Well we finally have found the answers we have been waiting 13 months for. The bronchoscopy revealed that Trinity-Storm has a very narrow trachea and her entry way into her upper right lung is also narrow. What that basically means is that she has to work extra hard to breathe and when she gets sick her airways almost completely close up. So when she had cardiac failure a few months ago that was because her airways were completely blocked. So we have arrived back home and she will be having CPAP (continuous positive airway pressure). This will be on whenever she sleeps longer than 45 minutes and especially at night. The pressure will open up her airways and help her to breathe easier. This is a trial and error thing to see if it improves the narrowness of her airways. They will review in 6 months time to see the difference. If that doesn't work then I'm not sure what they will do. But as she grows her trachea should grow as well. She has just 1 feeding tube now which is still the nasal jejunum tube. She has a video swallow test coming up and we will be able to see if it is safe for her to have a bottle. If it is then hopefully she will drink orally and we can get the tube out altogether. Initially the docs had thought that she was aspirating but on closer inspection it shows that she wasn't! So that is great news for us and her! The reason why she refluxes is because she has to work so hard to breathe. So every time she eats it kinda fills her up faster and she can't handle it so she refluxes. But this will hopefully improve in time. Everything is about time and waiting at the moment. But we have waited 13 months I'm sure we can wait a little bit longer.

Back to Starship

Well I haven't had much to update lately. My daughter has been well enough to keep out of hospital but now we are due back at Starship. We are leaving at 6.30am tomorrow, but it's just me, Antz and Trinz going. The 3 younger kids will be at Nana's and the 2 big kids will be at home. I can't imagine the state the house will be in when we return.
We are only going for 3 days this time, if everything goes to plan. She is having a bronchoscopy and CT scan done on Tuesday and has to be ventilated so we are hoping she comes off the ventilator straight away.
On Thursday her feeding tube was blocked so I had to feed her down her nasal gastric tube. On Friday we went to the hospital for a barium swallow test and the staff in the children's ward attempted to unblock her other tube. They tried for a few hours with no success so we had to get it pulled out. There was about 10 - 15cm of blockage. It was dried up hardened milk. They were going to put another 1 in which would take a few more hours to get it in and xray it etc, so we just said to leave it because the staff at starship can do it on Monday.
So at the moment we are hoping that she doesn't aspirate her milk into her lungs. So far she seems okay and we will see what happens in Auckland.
I will try and keep this updated while I'm at Starship to let you all know how she gets on.

Trinity-Storm 1 year on

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

Trinity-Storm has turned 1

Some recent photos of Trinity-Storm

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.

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.

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!!)

30th June 2009

Well it's been over a week since we've been home from the hospital, gee I wish that the children's ward at Keneperu was still open.
I actually thought that on the weekend just gone we would be heading back in there, but she has come right and is slowly getting back to her normal self.
She is due to have her hernia operation on the 22nd of July, which isn't far away now. Fingers crossed she keeps well in between otherwise it can affect her operation.
She is starting to want to play with toys now, well toys she can hold. She loves playing on the floor with her play gym. It's great because it has different toys attached to it and there are parts on it that make crinkly noises. She is a bit behind in her development, well everything really. Her feeding has gone back downhill since she has been unwell. She hasn't wanted to drink her bottle for over a week so everything has been going down the feeding tube. I think she is quite used to the fact that she can just lie there and she gets food. She lost a bit of weight in the hospital so she is still very tiny. She is currently weighing around 4kg, so yeah about the size of a newborn, well she actually weighs what my daughter Nimeesha weighed when she was born. I don't mind her being so small, it's just her development can be affected by her size. She isn't eating solids yet maybe we should give her some taro and coconut cream and she might fatten up!!!

19th June 2009

Well we are finally home after 8 long days at Ward 19. She had an xray today which showed her lung has inflated itself. I honestly thought we were going to be there for much much longer.
We will be going back in about 1 months time to get her hernia operated on and then hopefully we don't have any more of those hiccups. I just hope she is well then otherwise we will have to wait longer to get it done.
Well I am tired and it's been a long week so I will update this next week to let you know how our weekend goes.

18th June 2009

Yes well we have made Ward 19 our home for the next couple of weeks at least. We were told yesterday that it could take 2 days or it could take 2 weeks for her lung to reinflate itself. And at the moment her breathing isn't that great so we are nowhere near to going home. If all that wasn't bad enough, I gave her a bath today and what did I found, a hernia in her genital area. Immediately the doctor came and said it was very uncommon for girls to get it, but nothing is simple with my girl. He pushed it back in and it was fine, when it comes out we just have to push it back in. If it doesn't go back in then she will need emergency surgery, which at the moment she is too unwell so fingers crossed it stays okay. Mr Pringle will come and check it in the morning. Eventually she will have to have it operated on otherwise it can cause problems. Just when I thought all of her surgeries were over.
Sometimes I feel like I'm hitting my head against a brick wall!!! My kids haven't seen me for over a week now and they are starting to wonder whether or not I am going home. I spent quite a bit of time upstairs in the Ronald McDonald room today. I never knew we could help ourselves to the food up there. It's a lot better than eating 2 minute noodles for dinner. All I want is a home cooked meal and my own bed to sleep in. I might need somebody to swap with me for 1 night so I don't go insane. I am working on Saturday at the stadium so my Mum will come in and be with her, Antz has to referee on Saturday so he can't come in. At least I will get to go outside and be part of civilization for a few hours. Then on Sunday Freda is going to come in and I will go and watch Devante play league. He is playing just up the road from the hospital so at least my kids can come in after the game and see their sister.
Oh yeah and Swine flu is in the ward above us. Won't be long and we will probably all have it as well, Just another thing we don't need.
Anyway time to go and try and get some sleep before her next feed which she just mostly cries through and then cries for the next hour after it. Fun times!!!!

16th June 2009

Well everybody we aren't going home in a hurry, we could still be at the hospital in the weekend. Today I actually went outside. I needed to go and get food that doesn't cost a fortune, so I braved the rain and went to the takeaway shop and the dairy. OH MY GOSH!!! It was so cold.
My baby is having a sleep right now, she gets really tired. I feel like I've had no sleep what so ever. She was up for a feed at 12 midnight and didn't go down to bed until 2am. Every time I tried to put her in her bed she would cry and cough and wake herself up. She just wanted to sleep on her tummy. Poor baby, it must be really hard to breathe.
She had some physio done on her lungs and I know how to do it for when we go home. It's pretty easy stuff really.
I had my Mum come in for a visit yesterday and then my friend Pania came in and brang us some dinner. I can't thank the people enough that have been there from Day 1 helping us out, it really means a lot. As for the others well they know where they can shove it. Thanks for all the nice comments and get well wishes for her as well they mean a lot.

June 14th 2009

Well we are still in the hospital. She is improving but her breathing is still too erratic for us to go home. We have had to move rooms so that a sicker baby can be closer to the nurses station. I suppose that's a good sign. Fingers crossed we go home tomorrow.
I am quite upset at the moment because people in my extended family think that it is funny to abuse me and talk about me behind my back. They are saying things about me that aren't true and some of them are true but what does it matter to them. So what if my family struggles from time to time and asks for help from others. I think they would struggle too if they were a family of 8 and living on one income and had a very sick child like mine. We don't always ask for help because we try and do things on our own, but when we do oh my gosh the knives start coming out and it's all my fault. The thing I don't understand is why they direct things at me and never at Antz. Maybe because he will tell them exactly where they can shove it!! Anyway I think that those people that are gossiping need to get a life and stop trying to ruin mine and have a bit of compassion for our situation. It's not like we've had it easy in the last year and they certainly haven't been there to help. Thanks to all of those that have helped us out you don't know how much you mean to us!!
Anyway that's my moan for now, I'm sure once I get home there will be more dramas.

12th June 2009

Well I am posting this latest message from Ward 19 of Wellington Children's Hospital. Unfortunately my daughters lung has collapsed again and she also has an infection in her lung. We came in yesterday and it looks like we are here for the long haul. She is doing remarkably well considering the circumstances. We were here just over 2 weeks ago with the same thing. She seemed to come right so we were sent home. Well because she had bronchiolitis they said the cough would last for quite some time, so she has been unsettled and quite grumpy for a few weeks now. She is having iv antibiotics and is having fluids. Her milk intake has been reduced, which she is not happy about at all. We have the same room from the last time, so I've told them to reserve it for us!! We are bound to be in here a few more times over the winter season. Roll on summer weather I say!! Fat chance of that happening.
I felt really sorry for my son Cassius yesterday, it was his birthday. I did however manage to make him a cake and cook him butter chicken for his dinner. I think he was quite happy with that. I told him we will do a proper birthday with his friends in a couple of weeks. Touch wood Trinity is okay then.
Until later that is all my updates for now, so feel free to come and visit us over the weekend, I am going to be rather bored!!!

we went into hospital on Wednesday with what we thought was pneumonia, her right lung had collapsed. They needed to keep an eye on her and make sure her heart rate didn't drop and to monitor her oxygen requirements. She had to sleep with her right side up so her lung could have a rest. By Friday it had corrected itself and we were allowed to go home. They kept doing blood tests and wanted to keep us in there a bit longer but I asked why and they couldn't answer. So I politely told them that her father would be coming in and they'd end up having to call the police to restrain him. They gave me answers after that and let us go.
I came home to a house full of people because Antz had organised his granddad's unveiling for Saturday. Family from Auckland and Gisborne had come down and half of them stayed at our house. My sister came to my house and watched her so I wouldn't have to take her out. The weekend went really well and all I can say is I'm glad it's over!

my girl in hospital

Hey well I know it's been a while so here is the latest.
Our whanau is now living in a 5 bedroom house right in the heart of Cannons Creek! And I mean right smack bang in the middle. We are just by the Mobil. It's an awesome place, there is plenty of room for all of us. There is even an area for a bbq, which means we now have to go and buy one. That must be our xmas present this year.
My baby girl has had a few colds since we were discharged from the NICU. Over the last week she has had another cold. What turned out to be a routine check yesterday at the hospital showed suspected pneumonia. We were okay 2 go home with antibiotics. Today we went back and it turns out her right lung has collapsed! This is all from her being bottle fed. So for the moment no bottle feeds and everything down the tube. We have been admitted to Wellington hospital ward 19. We will probably be there for the next few days.

3rd May 2009

Well it's been a while since I updated the blog so I thought I'd better write.
Me and my kids have just come back from Kaikoura, my grandmother died on Tuesday 28th April from cancer. She was such an awesome grandma I couldn't ask for anybody else. She loved everybody so much, and she came 2 all of my kids christenings no matter if she was sick or not. It's a shame she won't be there for Trinity-Storm's one. I know she will be watching over her though. I'm going to miss her so much.
What a mission that was 2 try and get all of my family down there. I travelled down with my 2 sisters, all of their kids and my brother. On the way back my Mum and Dad were with us. It was nice 2 be able 2 take my kids 2 our marae, only Devante had been there before. We caught up with our cousins that we haven't seen for so long. The plan now is to have a get together in Wellington.
Trinity is doing great, she is getting hungrier now which is a good sign. She is sleeping better, sometimes through the night. She got heaps of tests coming up and hopefully she'll come off the oxygen soon.

After a bath

9th April 2009

Trinity-Storm had a check up today with the paedeatrician. We went back to the neonates for the check up because the next clinic is July. So far so good for her. They've made some appointments for her, chest x-ray, head scan, heart scan, blood tests, reflux test, sleep study. You name it she's having it. I suppose hospital visits are goin to be a huge part of her life.
I had to go to the chemist again today. Her medicines aren't cheap, we also get her milk from there as well. These things soon add up.
The other thing I forgot to mention is that when the doctor reviewed her today he said she should never have been sent home when we took her in to get checked on Monday. She apparently had some kinda virus which could've been potentially fatal for her! He was not happy at all. I'm glad Antz wasn't there because he would have got angry and turned into the hulk. But she is a lot better now and is fighting off her flu.

Having a bath in a bowl!

Having a bath in a bowl!

7th April 2009

For the last 4 days Trinity-Storm has been unwell. She has got a cold and is just miserable. We had 2 take her back into Wellington hospital yesterday to get checked. Lucky for us she was fine and we didn't have 2 stay in there. She is still sick and we just have 2 monitor her and make sure she's okay. But she's a fighter so she will get through it.
I hope you all got a copy of this weeks womans weekly because our story is in there with some awesome photos.

big sister feeding little sister

1st April 2009

Hey everybody. Yes I know it's been so long since I've updated my blog, but there has been a lot happening. First of all I will just start by saying that my daughter finally came home on the 24th of March. I can't thank everybody at the neonatal unit enough for what they have done for my daughter, without their hard work and dedication she wouldn't be home with us.
Our house has gone from being a 5 person household to an 8 person household.
Antz's ex-partner died on the 14th of march (Nimeesha's b'day) so we did the only thing we thought was right and have taken the kids into our care. So as you can imagine we have a very busy household and we will be applyng to get a bigger house. Fingers crossed.

11th March 2009

Okay well I am now a walking zombie after Antz and I spent a very tiring night at the hospital. The plan was to stay with her in our room but she wasn't stable enough for that to happen. So we just had to be there for every feed. We were still up at 1am so we both did that feed and by the time we went to bed it was nearly 3am. I got up just before 5am to do that feed and went to bed about 6.30am. Antz got up just before 9am to do her feed and I slept until 10am. It takes a good couple of hours to feed her because first she attempts her bottle and then whatever she doesn't drink is put through a feeding pump which goes down the tube in her nose. Then she has to be upright for a while after her feed because she has severe reflux. Her tummy gets so sore and she is constantly straining. I feel so sorry for her because there is nothing really that we can do. She is having medication for it so that does help a little bit.
I must admit the nurses on night duty are absolutely bonkers!!!!! Hahahaha just joking girls. You have to find some way of staying awake, so they just do what they have to.
It seemed really weird being there during the night and I think Trinity was confused as well.
We learnt the safe sleeping techniques and how to do CPR on a baby today. Fingers crossed we never have to use it.
A young girl that had left the hospital a couple of months ago was there yesterday, her boy had come back for his hernia operation. It was good to see them, he has grown so much and she is doing really well. She is an excellent mother.
That's all for now I am too tired to think of anything else to say.

10th March 2009

Hi everybody I know it's been so long since I have posted anything. We have been so busy I barely even get time to think. My daughter Nimeesha is nearly 5 so we have been trying to sort out things before her big first day of school. My little baby Trinity-Storm is nearly ready to come home. They told us last week that she can come home next week (16th March). It's exciting but scary at the same time. I have kind of gone into panic mode because we didn't have a lot for her, in terms of car seat, bassinet, pram etc. But it's okay because I sorted all that yesterday and she has brand new everything. I need to get a big oil heater for our living room as well, I have a pellet fire but I need to keep the temperature in our house the same. We have small oil heaters for our bedrooms but nothing for our living room. I don't have drawers for her either so if there is anybody out there that can give us some drawers please do!!
I have so much to do at my house in terms of cleaning and organising space. My mum is going to come and help me out and so is my sisters and sister in laws. I think I'm going to be over cautious with her for a while until I get used to her being at home.
We have to do the cpr course and learn how to put her feeding tube down her nose and how to work her oxygen. yes she is coming home but we will have her on oxygen and on a feeding tube. She cannot drink normal formula milk and is on pepti junior which is specially made for her because of her malabsorption. We will be bringing home a whole pharmacy of medications so I am going to need to keep them all separate and in a safe place.
The thing that I am going to find the most stressful is the visitors. It's going to be hard explaining to them that they can't just turn up when they feel like it. If they have been around people that are sick they can't come and visit because I can't risk her getting sick. I am going to be isolated from people for a while, but that's okay as long as my daughter doesn't get sick.
Antz and myself are rooming in the hospital tonight with baby in the room with us. We have to make sure we can cope with her and get used to a night without sleep!!! AAAAHHHHHHH!!!
I know for the first couple of weeks I won't be sleeping at all anyway.

23rd February 2009

Today was a big day for my little girl. She had her eye test at 7am and when I arrived at 10am we went down to the Nuclear Medicine department for her HIDA scan. It looked quite funny because it was a bed that an adult would lie on for a MRI or something similar, and there was this tiny little baby on the end of it. She was really good, she was starving but she behaved. Whoever invented the dummy is a genius. I don’t know how I survived all of my other 3 children without using 1. The test took ages but it went really well and they seemed to be pleased with it. They had to squirt some stuff into her veins and then look at her liver through a special camera. It looked really cool and it kinda looked like the milky way with lots of little dots.
When I got back I was told that she was going to have laser surgery for her eyes tomorrow because they were getting worse. 1 was worse than the other so they needed something done now rather than wait. It wasn’t new information we knew that she would probably end up having this it was just a matter of when. It will be done at around 7.30am so I definitely won’t be going in for that.
I know she will be in very capable hands so I won’t have anything to worry about.

22nd February 2009

Today I went in with Aunty Freda and Uncle Steve and Antz stayed home to cook tea and hang out with the kids. Yay a break for me!! It has been nearly 1 month since they have seen baby, so it’s their first visit to the new unit.
We were there in time for her feed and to do her cares, so Aunty Freda got to feed her a bottle and I completely stripped down and changed her bed. She drunk about 20mls for Freda and was wide awake which was really good.
We were there for about 4 hours and baby was really settled and calm. Typical of her to behave for her aunty and uncle and misbehave when we are there.

21st February 2009

Yay it’s the weekend at last. My feet hurt from working last night and I’m tired because I didn’t go to bed until after 1am.
We all went in again and the kids took in their mp3 players and their drawing and colouring in books. Devante drew a picture of a zombie and gave it to Corinne and told her it was her self-portrait. I don’t think she was too impressed!!
We finally caught up with the doctor today. Trinity’s bone scan was fine and there is nothing wrong with the length of her bones and her poor growth is a metabolic and nutritional issue not a bone one. Phew! At least we can rule that out and they can work on getting her bigger and stronger. There is still some tests to be done to rule out cystic fibrosis. She is having an x-ray test on Monday, it’s not your typical x-ray though and it takes about 2 and a half hours. The patients are supposed to lie still for the procedure so I don’t know how that is going to work with her.

20th February 2009

Today was your typical Wellington day, pouring down with rain!! So Antz didn’t go to work because he probably would’ve drowned in the rain.
We were in there for most of the day so we got to give baby a bath and spend quite a few hours with her. Nimeesha helped give her a bottle and pick out her clothes.
The genetics lady and the dietician were in the unit looking at baby’s notes and skeletal scans. We didn’t end up catching up with them because they took too long and we had to get the boys from school. Hopefully we can just find out from the doc’s on the weekend what the findings were.
There is rugby on tonight at the stadium so it’s my first night back at work. It feels strange going to work after not working for so long.

19th February 2009

Today we had our visit and then Mum rang me to say my cousin and Aunty from Levin were down. I just told Mum to take them in because we had been in. Mum said Trinity had just had her feed and was awake and upset with her reflux and the nurse wouldn’t let Mum pick her up. So I’ve told Mum if that happens again to just pick her up and tell them to ring me if they have a problem with it. I could understand if she was asleep but she was wide awake and upset.
The doctors were there while mum was there and they were trying to work out what to do because baby isn’t growing fast enough for them and she gets tired easy when she is trying to have her bottle. It’s easy to see why she gets tired. She is still so small. We still haven’t caught up with the doctors so hopefully we can on the weekend.
There was a nice article in our other local newspaper today, the Citylife. It was really nice and I’m glad it came out the way it did. There was a person I forgot to thank though, that was doctor Jeremy Tuohey. He was the doctor that did my scan and picked up the placental problems in the first place.

18th February 2009

We all went into the hospital today. The kids just spend all their time walking in and out and finding cups to get drinks of water.
One of our friends that was in the old unit was back for their son’s operation. It was good to see them and see how much he had grown in a few short weeks.
Corinne was calling us all trouble as usual and Antz spent more time in their room than in the room with baby. And he says I talk a lot, whatever!!!
Baby was a bit unsettled when it was time for us to leave because of her reflux so we left her in the nurses capable hands.

February 17th 2009

Today is darts day so I took my Mum in again. She got to have a nice long hold with her. She hasn’t had a hold of baby before so today was her first time. She kept asking me if I wanted a hold but I just let her have her. I get to hold her every day.
She was good today, didn’t complain too much after her feed, but it helps with her dummy because it makes it not as sore when she has her reflux.
My daughter has been having quite a few tests lately but we couldn’t get any answers as to what they are for and why, hopefully tomorrow we catch the doctors on their rounds so we can ask them.
There was an article in our local newspaper the Kapi Mana today, so I took in a copy for the nurses and doctors to keep. Everybody has been texting and ringing and commenting on the nice article and picture. It’s the first picture actually of me, Antz and baby by ourselves.

16th February 2009

Today me and Nimeesha caught the shuttle van in from Keneperu Hospital. She was buzzing out all the way there because it wasn’t our car and she got to sit right at the back by the window that opens. Then she was freaking out even more because the shuttle van door opens by a push of a button. It’s amazing what amuses kids. It was really nice going in by shuttle though because we got dropped off right outside the building and didn’t have far to go at all.
We got there in time for her 1pm feeding so Nimeesha held her while I gave her the bottle. She had about 10mls and then decided she was tired. So the rest was through the NGT. She had her feed and then for about 1 hour afterwards I had to hold her up because she was sore from her reflux. She didn’t vomit at all but you could see it was still very sore. My poor girl. She has started having medication for it, but it’s not just going to make it go away in a day or two.

15th February 2009

Sunday, visiting day for the kids. All of our kids haven’t been to see their sister for quite some time now so we thought we’d take them all in. They all got to have a nice long hold of her as well, my 4 year old Nimeesha buzzed out because she was holding her without me helping.
The kids enjoyed the new unit and it was nice to have them in the lounge right next to the room instead of outside the unit. At least we can see if they are behaving or not. Oh and of course by daughter got taken into the staff room by Cheryl to find the stash of chocolate. She was very impressed. I think the new unit is a lot friendlier for families to visit, it may not look it but it is quite cozy and relaxed.

14th February 2009

Well today is valentines day!!! Oh how sweet, whatever!! We haven’t really ever done the whole valentines thing before so this year was definitely not going to be any different. We did go out to watch rugby at the stadium so I don’t know whether that counts as a date. Thanks Classic Hits for the tickets!! It was a stink night of rugby but an awesome night out.
My daughter is just chugging along and doing her thing. We went in before we went to the rugby to bathe her and give her her feed. She got a bit too tired trying the bottle but at least we made an attempt. She has about 10mls and then tuckers out so the rest of her feed is by NGT (nasal gastric tube). We just have to keep persevering with the bottle, the sooner she takes it the sooner she comes home.

13th February 2009

Well it’s Friday the 13th today, but we have had no bad luck what so ever. My daughter made page 3 of the dominion post and then I was interviewed on Classic Hits Radio Station. They just wanted to talk about how special she was to be the first baby in the unit and how little she started out in life. They have also emailed me the audio of the interview so I can keep it to play for her when she is a big girl.
We have so many people to thank for her survival. When we were only given a 50% chance of her surviving we never thought we would ever get to day 105! She certainly has attitude and is a fighter but without today’s technology and equipment she wouldn’t even be with us today. Thanks to everybody that has played a huge part in her life.
I know that when she is older and hears all the stories about her, she too will be so grateful for her “storm” of a beginning.

12th February 2009

Today is what I will call “Trinity-Storm’s Day”. It was the scheduled move for the new unit today and my daughter was the star of the show. There was film crew and newspaper reporters everywhere. They couldn’t move her down the corridor because they were all in her space. We weren’t allowed to go in until all the babies were finished so we only got to see it on the TV and in the papers. You can go onto the TV 3 website and have a look at the old news footage and see her on there. Me and Antz also got interviewed later that afternoon when we went in to visit her. So we got a bit of fame too, but it was all about her. She was the first baby to enter into the unit and she did what she does best, she had a bradycardia in the new link tunnel so everybody had to stop until she decided to breathe again. That is so typical of her to make everybody pay her all the attention. She loves attention my little bubba.
The Kapi Mana newspaper also turned up along with the dominion post to interview us. So next week she will be in the Citylife and Kapi Mana newspapers. My daughter is making sure her presence is known to everybody. Well right from the start she has always been our little performer.

11th February 2009

Tomorrow is the big moving day for the unit. They are moving to the brand new part of the hospital which is all rather exciting. We got to go over and have a sneak peek of the unit, oh my gosh it’s so amazing. Anyway I was paid a visit today by some media people and they want to alert the media about Trinity. She has the privilege of being the first baby that will go over to the new unit and because she is over 100 days old they would like to let everybody know about it. I was absolutely fine with that of course. My baby is going to be a superstar!!
They also had like a little closing ceremony or like a closing blessing of the unit today and we were part of that. I held Trinity, 1 nurse had her monitor and another with the oxygen tank. It was rather special that we were a part of that ceremony. It is going to be kind of sad to leave the old unit but it’s a big step forward in my baby’s life and we can only look forward to bigger and brighter things in the new unit. We don’t plan on being there for long but long enough to enjoy the new surroundings. I know that so many more babies are going to be able to benefit from the new unit and I know the staff will continue to do what they do best. I can’t thank them enough for what they have done for my daughter and family.

10th February 2009

Well what a surprise to see my daughter after a few days, she is in a big cot and is now off the cpap and is only on low flow oxygen. She has been having attempts at a bottle which is good because I’ve given up expressing and the whole breast feeding. 3 months is a long time to express and I just can’t do it any longer, I’m tiring myself out too much. She’s had all the good stuff for the first 3 months so I’ve done what I can.
Anyway when she heard my voice she dropped her bottom lip and was doing a bit of a sob cry. She missed her mama. I got her out for a nice long cuddle and she kept giving me the one eyed look while poking her tongue out. We also made the big move from Room C into Room 6. Wow I can’t believe we are in the numbered rooms now. It’s a big step for us.

6th February - 9th February 2009

RAGGAMUFFIN!!!!! Well what can I say awesome weekend awesome concert! I am going back again next year for sure.
The hospital staff informed me that my daughter was very well cared for by her aunty and uncle, they were scrutinizing every thing they were doing to her!! They actually called them watchdogs!! I think her uncle is very protective of her. So look out anybody that hurts her when she is older. On Sunday the 9th baby actually turned 100 days old. Her uncle got to have a hold of her but only because he moaned that her aunty got a hold the day before. They should feel privileged because they are the first ones in the family to get a hold.
I just want to say a special thanks to them for looking after her, it was a bit of peace of mind for us to know that she wasn’t left on her own.

5th February 2009

Well all my daughter did today was sleep. We got there before her feed and she was asleep. Then she had her feed and she was asleep. She did open her eyes a couple of times and then she had a bit of reflux so she woke up had a bit of a gag and then went back to sleep. Rather boring isn’t it.
Tomorrow Antz and I are running away for the weekend. We are going to Rotovegas!!!! We are going up there for the Raggamuffin concert. I’m excited I cant wait. This will be our only chance of escape before our little princess comes home. We have left our daughter in capable hands with her aunty Freda and uncle Steve. They will go in every day and visit her for us.

4th February 2009

Well not much has changed from yesterday, she is just doing her thing, sleeping eating and growing. If she goes well then soon she will be on the low flow oxygen and off cpap. Which will mean she goes into a big cot like a big girl. She is 96 days old today so she is an old girl. Well the other baby that was born before her has finally gone home, so she is the oldest baby in there at the moment.

3rd February 2009

Well my little big girl had an attempt at breast feeding today. It was rather funny because she was absolutely starving so she couldn’t get it into her mouth fast enough. She worked herself up so much that she got tired. She coped really well on low flow oxygen though and was on it for about half an hour. I just have to keep trying with her and see how she goes. My milk supply is pretty low, well actually we ran out of milk for her today, so they have to start giving her pepti junior milk. This is partly digested so it is a bit easier for her to tolerate. Whatever I can get out I take in every day and she has that in between feeds.

2nd February 2009

Okay I have been slack with the whole blog thing lately, but I don't seem to have any time to do anything at the moment. After 3 months of travelling backwards and forwards it can get a bit tiresome. But hey we do what we need to do because we love our daughter.
Anyway today is her official due date and she is finally out of the isolation room. She is doing extremely well considering what she has been through and now we are just playing the waiting game.

28th January 2009

My little angel was looking a lot better today. She has managed to rub her chin and in doing so has rubbed off some of her sores. It’s okay though because it’s the dried up bits.
She is now weighing 2168gms or 4.7 pounds. She is on about 21ml of milk every 6 hours and is steadily increasing. She had some more time off her TPN today which is going really well. Once her levels of her cpap go down they are going to try and put her on low flow oxygen for about half and hour and try and feed her a bottle. She is sucking fine but they have to make sure she swallows okay. Fingers crossed this all goes well!!
I’m on cake making duties again tonight, we have to take a cake in for her reaching 2kg. Well they actually said 2 cakes, 1 for each kg. She is nearly at her due date so I think the nurses might get some special goodies from us next week.

27th January 2009

Today is darts night so I went in and took my mum for a visit. She hasn’t seen her since her surgery and she said she has got so big. She got to change her pooey nappy, Hahahaha I told her I’d make her do it!! That’s what nana’s are for isn’t it?
Anyway today she was a lot more settled and her sores are drying up and healing really well. She had 1 hour off the TPN today and coped nicely. Her milk intake is now up to 19ml and increasing every 3rd feed by 1ml. I really don’t think I’m going to be able to keep up with her at the rate she is going.

26th January 2009

Back to work for Antz today, and because he was working late I dropped off the kids at mum’s (it was my nephews birthday over there anyway) and I went in by myself. Baby has now reached 2kg. Her weight was 2000gms exactly!! I guess that means another cake!! They are cycling her on and off her TPN to give her liver a rest. Today it was off for half an hour tomorrow possibly 1 hour and they will gradually increase it to see how she copes. Last night she had a really crappy night as babies do, and was awake most of the night. She was a little bit irritable when I was there, so all she wanted to do was suck on her dummy. It is taking her a while to get used to her dummy because she associates anything put in her mouth as something bad. We just have to keep trying and get her used to it.

25th January 2009

Sunday!!! No such thing as a sleep in when the kids are waking you up before 8am!! We had a visit today from Antz’s grandson. He is 15 months old and is Trinity’s nephew!! Funny to think she is an Aunty. She must be 1 of the smallest aunties’ in the country.
Baby is still in isolation which is quite nice, they said they’ve picked out our new room in the new part of the hospital with a mini bar and an ensuite. Sounds good to me. It will be nice to be in new surroundings. Hopefully we aren’t there for too long and can bring our baby home.

24th January 2009

Trinity has now been moved into the single room, so we get to have our own sink and can hide away where nobody can see us. Her bottom is really sore but it is starting to dry out which is good. The sores are getting spread from her rubbing her face and ;putting her fingers in her mouth. We think they are most likely from the tape that is used to stick the tubes etc on her face. She had a little sore before surgery and has most likely just rubbed it and irritated it and made it get infected and spread.
I tell ya if it’s not one thing with her it’s something else. My girl is actually 85 days old today or you could say 12 weeks old. It is getting so close to her term date. I can’t believe how fast time has gone by.

23rd January 2009

My daughter is still in isolation and the tests they did have come back showing nothing. So in the meantime she is still having antibiotics and we still aren’t having visitors, we could have people in but it just makes it easier when we don’t. I hope she hurries up and gets better because we haven’t had a cuddle with her since before she had her surgery, so that’s a few weeks ago now. She will be missing her mummy daughter cuddles. Well I know I do. I just want to pick her up but I can’t.

22nd January 2009

Well today I got a phone call from the unit. It was a bit unexpected. Trinity has got some sores on her face and it has spread under her chin and on other parts of her body. They aren’t sure what it is so they’ve put her in isolation so that other babies don’t get infected by it. When we got there she was still in the same place but they’ve put up a white screen. Anybody that goes in must wear a gown or an apron and gloves. Well that’s what the sign said. But it was just me and Antz so we had to just wash our hands every time we entered in and out. It’s not as bad as it makes out. She is still alert and having feeds and doing what she normally does, like pulling out tubes but she just has sores on her face and body. So for the meantime we aren’t having visitors until she gets better.

21st January 2009

Today I went in to see baby early. I got there around 1.30pm hoping for a cuddle but she was still a bit sore and unsettled. She was in her big bed, but no clothes, too many cords and drips everywhere so it’s a bit too hard to put clothes on her. Her dad got there after work, and he was just about yelling the whole place down. He was so happy to see his girl in a big bed. The nurses had thought I’d tell him but I was good and I kept quiet about it. Do you know how hard that was???
She is doing well on feeds and is slowly increasing by 1ml every 12 hours. Her weight is steadily increasing. She is now 82 days old and is weighing just over 3 lbs.

20th January 2009

Today I went in around lunchtime and I took my mum in, I know it was outside of visiting hours but we thought we’d risk it. Of course she was allowed in. Baby was good but in a little bit of pain, she is still having morphine and pamol. She was due for cares so I made my Mum do them. I thought she might have a nice stinky nappy but she didn’t. Well you just wait Nana you’ll get plenty of them!
Another one of our friends left today to go back to Nelson. I couldn’t help but cry when she left, she was crying too. I know that when we leave they’ll have to mop the floor because there will be so much tears. OOO I can’t wait for that day. But hopefully we will catch up with them when they come back up for their baby’s operation.
Something exciting was also going to happen today after I left, my baby was going to be put into an incubator without a lid, that means she will be put in clothes and look like a big baby. I haven’t told her daddy we are going to wait and see what he says when we go in there. Trinity’s other mate was also going into one, they like to do things together.

19th January 2009

Today is Wellington anniversary day. It’s just another day for us traveling to the hospital. People always ask us if we go in every day or why we go in every day, well those are really stupid questions. Our daughter is just as important to us as all of our other kids, and while she is still in hospital we will still go in there. What kind of parents would we be if we didn’t go and see her. She is the most important thing in our lives right now and until she is home we will not relax.
I would like to thank all the people that leave comments on the blog, even though I don’t respond I do read them. Support is the biggest thing for us, without everybody’s help we couldn’t do what we do.
Anyway when we arrived today we took another cake in, this was called the poo cake. It was banana though, we thought we better not make a chocolate one! Our little girl had apparently pulled out her ventilator tube last night! They left her to see how she would cope and she has gone straight onto Wellington cpap. She thinks she can just do everything by herself now. She has also started back on her feeds again, and they aren’t slow feeding her like before. At the moment she is on 2ml every 4 hours. But they won’t increase her feeds too much until they know she can cope.

18th January 2009

Well I am going to call today “S” day, it stands for S**T. We got a phone call just after 11pm last night to tell us that our daughter had finally opened her bowels and did a number 2’s. You don’t know how excited we were, I think the nurses were all so excited as well which is why they rang us. They rang again 5 minutes later to say she had done another one. 11 weeks is such a long time to go without having one which is why we got so excited. Now we know her surgery has worked and she can poo on her own.
When we went in the nurse from last night had saved it for us in a little jar, how nice, but unfortunately I threw it away. I don’t think it would’ve lasted long in the house before it became rather smelly.
Before we left we did her cares oh and lucky me I got to change her nappy and to my delight she had done another poo just for me.

17th January 2009

Today we took Cassius and Nimeesha in to visit their sister, Nimeesha hasn’t been in since before her surgery.
She was rather funny today she was lying on her side so her big sister couldn’t see her plasters. That’s all she wanted to go in for. Anyway she just kept on putting her hand up over her eye. I kept moving it and then she kept putting it back. Little madam that she is.
We left early because they were having another attempt at putting her iv drip in. Hopefully it’s all gone to plan.
She is due to have another x-ray, her first one showed no gas, so lets hope she gets gas this time.

16th January 2009

Well not much has changed from yesterday. They have had trouble with her iv drip so they tried to replace it with no success. My poor baby.
Her weight has soared up to over 1700gms so we shall see how much she loses next week. We think she is really about 1500gms.
We had a look at the plans for the new hospital and were trying to decide what room we wanted. Hopefully in 2 weeks time we get a tour of the new unit. We can’t wait to move over there, it looks so much bigger and there is also a couple of lounges for the parents to relax in with their visitors and they will actually get to know each other. Only 27 more sleeps to go until the big move.

15th January 2009

Today was D day!! Dentist day!! I hate the dentist so much. I had to go back and have my stitches removed and a filling done for my middle top tooth. I was dreading it all week, but when they actually did it, it didn’t really hurt much at all. It was a deep prick in my gum which lasted about 20 seconds or so and that was it. I’m just glad it’s all over now and I can concentrate on stocking up my daughters milk supply. If she is anything like her brothers and sisters then she is going to love her food.
Only I went in for a visit today because I was already there this morning. We were supposed to have a rugby league meeting tonight but it was getting too late.
Anyway baby will have an x-ray tomorrow to see if she has any gas in her rectum, nice ay!! If she does then we are 1 step closer to getting her fed and on cpap again. No rush though I want her completely settled and ready to handle it.

14th January 2009

Our little girl has been putting on weight and losing weight so we are not quite sure what her actual weight is now. Once she has recovered and started eating again then we can get a true reading of her weight. She had a little cry tonight when we got there, but apparently she had been behaving all day and decided to play up when we got there. Nothing unusual for our little madam.
We spent quite a bit of time tonight visiting other babies, well we always do, but tonight we were saying goodbye to one of the young mums that we have come to know. She was getting ready to head back to Palmy any day from tomorrow, so just incase we didn’t see her again we sat with her for a while. It is really hard to be a parent of a baby in the neonates but to be a young parent is extra stressful, so we just wanted to make sure she was okay and keeping on the right track. Good luck to her and her baby and hopefully we can catch up with them in a few years time.

13th January 2009

Well my girl is doing remarkably well considering what she has just been through. She is getting a bit swollen which is to be expected. It is so nice to see her tummy even if it is swollen, and how nice to be able to open her incubator without the smell of poo!! She must’ve gotten so used to it that it would’ve been normal to her. All this time that she has had her bag on, we’ve never cleaned it out or changed it!!! Hahahaha what a shame!!!
Her daddy opened up the side of her incubator and stuck his head in to give her a kiss, I snapped him out and apparently it’s not the first time he’s done it!! Naughty daddy! We didn’t expect her to be awake when we went in but she woke up and eyeballed us for about 10 minutes. She didn’t really move much but enough to make her iv drip not work!! That’s just typical behaviour for her. She’s got to be able to play up and be naughty somehow and she always manages to find a way.

12th January 2009

What a quick day today has been. My son had his check up so we were planning on getting to the hospital at around 10.30am. Trinity’s surgery was scheduled for some time in the afternoon, so Antz was going to finish work and then try and get there before she went in. As I was picking up my Mum from Tawa I received a phone call saying to be there by 10.30am as there was an opening in theatre so baby was going in early. We rushed to the hospital I dropped mum off with Cassius at the fracture clinic and then I raced around to the other entrance of the hospital. I was stuck in traffic outside of the hospital where they have put the new lights and my phone rang. They were going to meet me in theatre because baby was all ready to go. I finally parked the car and ran to the lifts with the phone playing “in the jungle the might jungle the lion sleeps tonight” (that’s my message tone) people thought I was a bit crazy. I got to the lifts and was waiting for what seemed like forever. I was nearly about to run up the stairs from level B to level H when a lift opened, 1 lady got in and then got out saying “oh we can’t go in there it’s a patient” well to my delight it was my daughter going up to theatre, I jumped in and off we went. I signed a couple of consent forms said a quick hello and goodbye to her and then she was straight in there.
I went back down to the fracture clinic and Cassius was all over and done with by lunchtime so we went and waited for his sister. It was only about half an hour when Mr. Pringle cam out and said it was all done. He was very happy with the procedure.
Baby was very sore so they sorted out all her morphine and antibiotics for safe measures and her ventilator. That took a while so we went and got lunch came back and then had a quick visit and then left. There wasn’t much we could do so we just let her rest.
I rang before I went to bed and they had put a catheter in so she could wee. She was very relieved they said after that. My poor baby. It’s now recovery time and it’s going to take a while but we are so glad that she has finally had this surgery.

11th January 2009

Well today I got another nice long cuddle and Nimeesha kept bugging us for a cuddle. So just before we put her back into her bed, Nimeesha sat on my knee and we both held baby. It only lasted about 5 minutes and then Nimeesha had had enough.
I haven’t been too well the last couple of days, I think from having my tooth out and just been generally run down. I’m starting to get a cold and I don’t want to get sick otherwise I can’t go in and see baby. So as I was holding baby I was kinda nodding off to sleep, it didn’t last long though as we had to leave.
Tomorrow is going to be a very long day for us. I will be taking Cassius for his check up for his leg and then we will have surgery in the afternoon, so another long and tiring day for us at the hospital. Fingers crossed we get the surgery done this time.

10th January 2009

Today my daughter was in an older style incubator which looked like something off Doctor Who. She was quite smelly so we gave her a bath, and then a nice long cuddle. Antz and Nimeesha were on Christmas tree removal duty!! If you have ever been to the neonates around Christmas you will know what I’m talking about. The whole hallway from the lift going around into the reception is lined every year with Christmas trees. They are in pot plants with cement so each one weighs around 40kg. So you can imagine lifting all of those. Nimeesha had the card to open the door so she was the boss for a little while.
The ward is getting full at the moment, it is now got 42 babies!! It won’t be long and we will be over in the new hospital. We don’t plan on being there for long, my aim is to have my daughter home before Nimeesha turns 5 on the 14th of March.

9th January 2009

Well I rang the neonates around 10am and everything was still scheduled to go ahead for some time in the afternoon. We arrived at the hospital by lunchtime and baby had already had a sponge wash and had been nil by mouth since 5am. We got her out for a cuddle because it would be about another week before we got one. We had her out for about an hour and then were told maybe surgery would be about 2 or 3pm. So we put her back and went downtown to get some lunch. While we were out we got a call saying that theatre had rung and they would call for her around 3.30pm. So we headed back to the neonates only to be told it would be around 5.30pm. Because I have had a tooth that has been killing me for ages, the coordinator from the neonates rang the dental department and explained the situation and asked if I could be seen. We got over there around 4pm and by 5pm I had my tooth pulled out. It has been bugging me for about 3 - 4 weeks, and it was such a relief to have it out. But it was so sore getting it done.
Anyway we got back to the neonates just after 5pm and then Mr. Pringle came in to tell us that he was calling surgery off for today. He was getting too tired and by the time they would finish would be well after 9pm. So the plan is for it to be done on Monday afternoon. He was so apologetic for wasting our time but we would rather have him wide awake then half asleep, but it wasn’t a waste of our time because I finally got my tooth out.

8th January 2009

Our daughter is now weighing in at 1515gms!! Yay, it may not sound big but that is big to us, considering how little and delicate she was. I finally got a cuddle today after nearly a week without one. She is a lot easier to maneuver around, that sounds a bit funny doesn’t it. But you would know what I mean if you had seen all the tubes and cords and how small she was.
The nurses rang Mr. Pringle up for us and he has booked her into theatre at midday tomorrow. So if all goes to plan she will be stitched back up and hopefully it all works out okay. We are confident things will go to plan, so tomorrow will be another long day for us again.
If I don't post on here for a few days then don't panic and think anything has happened, it'll just mean I'm tired and haven't got time to do it, altough I might take my laptop into the hospital to give us something to do while we wait.

7th January 2009

Well our little girl has now reached 1475gms. That is really big to us considering she only weighed 440gms when she was born. We are now on day 68.
We finally met up with the surgeon, Mr. Pringle and yes he wants to close her stoma back up to get her gut working properly. He does have concerns that it may not work or it may leak, but we will cross that bridge when we come to it. We trust him as he is an excellent surgeon. If all goes well he is looking at having her surgery done this Friday. If not it will be next week, but he wants it done sooner rather than later.
We also met up with Dr Dixon the genetics lady. She is concerned that her upper arms and her upper legs are short. She should have done what they call catch up growing by now. That means she should be weighing what the other babies are. She has put on weight but not enough. But she has had things happening that have affected this. For instance her stoma, her heart and everything else she has had. So the plan is to have a skeletal study done when she reaches her due date which is the 2nd of Feb.

6th January 2009

Well we missed the surgeon and apparently the genetics doctor wants to catch up with us. She wants to discuss her short limbs and find out our family history. I’m going to blame everything on her dad of course!!! So our plan is to be at the hospital by 4pm tomorrow and meet up with the surgeon and the doctor.
We took another cake in today for all the fabulous work that the nurses are doing for our little girl. It was chocolate today, I think next time I’ll have to make 2 and share 1 out with the parents.

5th January 2009

Well I may as well pack up our house and move into the hospital. Today my son Cassius had an appointment at the orthopedic clinic. His appointment was at 10.15am and we had to be there 15 minutes early. We were there at 10am and were told at 11am that we had to go and get an x-ray done. So that was another half an hour wait for the orderly to come to take us to x-ray. By the time we had the x-ray done and got back to the clinic and saw the doctor is was about 1pm. We had to get a covering put over his cast to make it stronger because he is going to start moving around more. We finally got out of the clinic and went up to see baby at around 2pm.
The surgeon was looking for us but we had missed him. I am hoping that he is wanting to close her stoma up. We will try and get there tomorrow by 4.30pm to see him. Other than all our other dramas our baby is doing really well and just chugging along as she does.

4th January 2009

Sunday, well today is a bit of a slow day because we all didn’t get to bed until after 3am. Our friend decided he wanted to have a drink with Antz for the first time, so we had a very entertaining night.
Our daughter Nimeesha came in with us for a visit and was getting spoilt from the nurses. She was allowed to go into the staffroom and choose what chocolate she wanted to eat. They have taken a shine to her because she is very helpful to them, so I think that’s why she really likes coming in with us.

3rd January 2009

The weekend again already. Baby is back on feeds again, having 1ml per hour for 3 hours and then 1 hour rest. Fingers crossed it goes okay and she can have some more. It’s hard to imagine such a small amount, but her tummy has taken quite some time getting used to the kai so it is a very slow process.
I got another nice cuddle with my girl today. She always laughs or smiles when she sets her machines off because the nurses always tell her to behave. Some of the nurses that haven’t worked with her before are quick to turn her oxygen levels up and down, but if you just leave her she generally gets herself together and corrects her levels.

2nd January 2009

Our baby is now weighing in at 1350gms and growing quite nicely. She has tripled her birth weight and we have nearly reached 9 weeks. I can’t believe it’s been that long. It seems like only yesterday I gave birth to her.
As I had said on Monday she was a bit unwell so today she was having a blood transfusion. It had finished but the were keeping the iv line in her arm incase she needed some more blood or some medication.
I got another cuddle today and she was quite unsettled so we had the dummy on hand to give her. I think she wanted a feed because they have been stopped. Her output into her stoma bag was too much so they needed to stop feeds for 12 hours. They are going to try her on the special baby formula they have there to see if that makes any difference. Mr. Pringle will reassess after that to see what he is going to do regarding closing her stoma up. We can’t get it closed up if it’s not working properly otherwise her tummy will be back where we started. It’s always 1 step forward and 3 steps back. But it seems as though we are always on that 3rd step backwards.

1st January 2009

HAPPY NEW YEAR!!! Wow I can’t believe it’s 2009 already, another year gone and dusted. Today is actually mine and Antz’s anniversary, that’s 9 years we’ve been together now and 2008 seemed like one of our toughest years with everything that has happened to us. But we are confident that 2009 will be a good year because we will get to bring our little girl home from the hospital.
We were having dinner at my mums house today so all the kids were there while we went into town. I got to give her another cuddle today and she was so wide awake. She was looking at us all as we were talking and then setting her machines off. We said to her don’t be naughty and then she would smile. She knows how to get those nurses working. She’s quite the character and the nurses love her, especially Paula who we call Aunty Paula. She came in to see her because she hadn’t seen her for a while. She opened her eyes and eyeballed her. It was quite funny.
Our daughter looks really good now and we are so happy she is doing well. We can ‘t wait for the weeks to go by so we can bring her home.

31st December 2008

New Year’s Eve!! Today we got in to town after lunch so we could get a nice long cuddle. We hadn’t really made much plans for tonight knowing that we have to come back into the hospital and we didn’t really want to do it with a hangover.
When we walked in I got a bit of a fright, I couldn’t see her little hat and her cpap setup so I thought the worst. I thought she had been put back onto the ventilator because she wasn’t coping. BUT to my surprise she has been taken off midline cpap and is now on Wellington cpap. That means she just has prongs up her nose instead of the snorkel looking set up. She is a big girl now and won’t be long she will be joining her mates in the next room.
She was kinda smelly too and hasn’t had a bath only a sponge wash so we gave her a nice bubbly bath. Her big sister Nimeesha was there to help us as big sisters do. She also washed her incubator for the nurses. After her bath I gave her a nice long cuddle and she was all tuckered out so she slept most of the time. Her weight today was 1300gms.