operation cancelled again

31/1/08 Well tomorrow was meant to be her fundoplication and gastrostomy operation, but was once again cancelled because now skyla has wet lungs and pulmonary hypotension and the fact that she hasnt put any weight on. She still weighs 3.22kg. The dr said today that we will do the opeartion in a few weeks depending on her lungs and heart. She had a heart echo the other day which showed the hypotension and she still has a small VSD. It also showed her coarction of the aorta that was repaired still has a narrowing in it so she will eventually need another operation to inflate a balloon in there. At about 8mths the dr said. It is one thing after another. Its never ending. So atleast another 8wks in hospital i reckon. She was a bit unsettled today. She is still on cpap. A peep of 6 and in a ltr of oxygen. We took her off it this afternoon with no nose prongs and she sat on 97 to 100%. The funny thing is when on cpap she sits on 90 to 94% sats. (Work that one out) strange ay? We left her off for 1hr. She did really well. We put her back on before she started to work really hard. We had a visit from little George Cartwright, his twin brother Angus and there mum Alex. Alex bought me Blake and Skyla a present. It was so sweet of them. Skyla got a monkey toy rattle. It is so cute. George picked it out himself. Thankyou guys, Skyla loves it. I have been trying to upload pictures but for some reason the computer wont let me. Its really annoying me. Ill keep trying. So stay tuned for them.

ICU update

20/1/08 Skyla seems to be getting worse with her reflux episodes. They are happening nearly every couple of hours. Tomorrow we are going to meet with the dr and surgeons about surgery. Im pretty sure she will have surgery this week. She really needs it, she is in so much pain. They will do a LBO first. Thats where they put a camera down in her airways just to make sure it definitely is the reflux and not something more. If it proves that it is reflux, then they will continue on with the operation. They are also going to nick her tongue tie. Hopefully that will help her to suck her bottle easier. Not that she has had the chance to try it yet. Fingers crossed she takes to it well. It will be harder too because she also has a cleft palate. Other than that she is going pretty well. She now weighs in at 3.1kg. She is now 14wks old.

Meeting Kylie Minogue

14/1/08 Skyla is still in ICU. She is going ok. Still having lots of reflux episodes. She is roughly having 3 to 5 episodes a day, ranging from 5min to hours. We were cheered up a bit today with a visit from Kylie Minogue. It was pretty exciting. She is sooo little. She looked great though. Im still waiting on the professional pics. In them she has her arm around Blake. Wait till he shows his friends at school.

to the ward and back to ICU again

6/1/08 Skyla made it back to the ward today after spending 6 more days in icu. On sunday 7/1/08 she did it again. At 10pm she aspirated again. From 10pm til about 10:30 she was working really hard but calmed down for 10min or so. Then she vomited and it started again. She was screaming and gasping for breath. It wasnt until about 11:30 until the ICU drs came in. They took her straight to icu. Once there she continued to desat and scream and was working really hard. They put her on bubble cpap. She was fighting it. Her nose was bleeding, her mouth was bleeding because she was so unsettled. The next morning they put her on vpap. She was much more settled with that. Since then she has starting doing bradys and still desating. They are trying to wean her oxygen. She has come down from 2ltrs to .25 of a ltr. We tried her off the vpap today (9/1/08) but she just drops her sats straight away. Tomorrow they are gonna do a contrast study to see where her NJ tube is actually sitting, to make sure its in the right place. I just wish she would keep her sats up. Its been 90 days in hospital today (10/1/08) 65 of them in ICU. Her journey is one hell of a rollercoaster. She goes 1 step forward then 2 steps back. It is so hard. I just wish we can take her home. It wasnt meant to be like this. We should have our baby girl home with us. For her fundo operation she needs to be at least 3.5kg. Skyla now weighs 2.95kg. Hopefully she will start keeping her sats up and off oxygen so we can go back to the ward. A step closer to the door.

Back in ICU, Her 3rd admission

1/1/08 Skyla had a bad day today. She aspirated into her lungs after she vomited and had trouble breathing. I really thought i was gonna loose her today. It was the scariest day of my life. They started giving her oxygen but she kept dropping her sats. She turned blue and was blotchy all over. They hit the emergency button for a code blue. ICU came in and they managed to stabilize her. There was about 7 people in there working on her. The staff from the ward and ICU were fantastic. Without them my little girl wouldnt be here today. Skyla is now in ICU on CPAP. Luckily she didn't need to go back on the ventilator. They think we will be there for a few days to a week as long as she goes well. She is one tough little girl. They had 3 people holding her down as she was trying to fight everyone off. She is now 11 1/2 weeks and weighs 2.58kg. She is still very small but she is so strong. Must be the maori blood in her i think. Thank god she is a fighter. They have decided to take out her NG feeding tube and put in a NJ which goes further down past her stomach as she has really bad reflux. They will leave her with that for a while so that she will grow better and will probably have another operation to stop her reflux in about 6 to 8 weeks i think. They still have to discuss it but that is pretty much gonna be the plan. At least we will be able to bring her home on the NJ feeding tube. Its a bit daunting but at least we will have our baby girl home with us.