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.