Merry Christmas from Skyla

The Wiggles sing to Skyla

A Wiggly Christmas

25/12/07 Merry Christmas everyone. We spent xmas eve at home so that santa could come to Skyla's big brother Blake. He was so excited. We were up at 5am opening his presents and then we were off to see Skyla. Blake got really spoilt this year. PSP, nintendo wii, games, clothes, you name it he probably got it. Lucky boy. We arrived at the hospital about 7am. Santa had left a bag of presents for every child in there. Not just one present but five. Lucky little girl she is. Skyla had some visitors today. The wiggles came to see all the sick kids. It was so wonderful of them to take the time away from their own families to make our day so special. Thanks wiggles, it really did brighten our day. They even sang silent night to Skyla at her bedside. It was great. I dressed her up in her white dress. She looked so beautiful. Like a little princess. We weight her this morning, she was 2.38kg. She is gaining but very slowly. Skyla had a good day on xmas day. She behaved well. The plan is to start bolus feeds on thursday so we will see how we go there. I just hope she tolerates the milk.

Ward update

Sorry about the delay in updates. Been too tired when i do come home which is hardly ever. Pretty much at the ward all time.Skyla has had a really good 2 weeks at the ward. She has been behaving really good. About 3 or so desats here and there, mainly after a vomit. Yes she is still vomiting every now and then. Otherwise she is doing ok. The Drs reckon at least another month in hospital. Its such a long time. That means xmas in hospital, but oh well, we will get our little girl home soon.

To the ward we go!

11/12/o7 We headed off to the ward today. Bubba had a fantastic day. No bradys at all. No desats, she has been wonderful.

13/12/07 Her Dr came to see her today. He had a plan. The plan is: Start bolus feeds on Monday, wean morphine and clonidine and stop caffeine. Today she had an xray on her chest to see if the NG and NJ tube in her nose is in their right spots. He is also gonna get her to have a hearing test soon as she didnt have one at birth. Skyla is starting to get a bit constipated today.

14/12/07 Bubba had a few vomits today. A bit unsettled. They started her on some medication today as she is still constipated. Had bloods taken and had a visit from santa today. She got 2 presents. A hand painted wooden pull along duck and some winnie the pooh blocks for when she is older. She even punched santa in the nose. Cheeky little girl she is.

7/12/07 - 10/12/07

7/12/07 - 10/12/07 Skyla had an ok week. A few bradys here and there. Atleast one per day anyway. I run out of breast milk so as of 8/12/07 bubba is on Karicare, plus they will soon be adding extra calories to it to fatten her up. Thinking of sending her to the ward on tuesday 11th December. On the 10th Damien Leith, Australian idol winner 2006 came and did a little concert for the kids. I took Blake to it. He enjoyed it. All the kids that went to it will be on his up coming film clip to his song and will be on Tv as he is appearing on a saving babies series. After that we found out that Delta Goodrem was up at the starlight room. Skyla had her first walk out of ICU with a sats monitor of course. We went to the starlight room and had a photo with Delta. She pretty much slept right through it all. We also weight her. Currently 2.18kg.

Tummy Time video

This is Skyla's first time on her tummy. 5/12/07

Extubated,VPap, Full feeds, Tummy time and Physio

3/12/07 We were finally extubated this morning and put straight on to Vpap. (the mask). She coped really well. Hopefully they wont rush us out of ICU to quick this time. This time they are only gonna give her tiny breaks off vpap just so she isnt pushed too hard too soon, which is great.

4/12/07 Early this morning about 1am my mum ended up taking my son to hospital as he was vomiting and gastric and in alot of pain. They sent him home saying it was gastro. So because of this i cant see him for a few days as if i do i wont be able to go near Skyla. It makes it very hard. He seemed alot better this afternoon mum says. Hopefully i will be able to see him soon. He will stay my mum for the rest of the week. He is already driving them crazy. HEHEHE. Skyla is up to 10.5mls per hour. We weighed her today. She has lost some weight. She was 2.15kg now she is 2.02kg. So tiny.

5/12/07 Today Skyla stared Physio as she is always clenching her fists and also she doesnt get out of her bed much so we have to start moving all her joints. She was pretty settled during that which was good. Feeds up to 11.8mls per hour. She had her first sit in her bouncer today. She looked so cute in it. The belt to hold her in pretty much covers her whole body. She was very settled. She was off Vpap today for about 1.5hrs. Coped well. Sats stayed between 95-100%. Before we put her back into her cot she had her first bit of tummy time. She nearlly rolled her self. She was lifting her head up. She is so strong. Today we had visits from the NSW cricket team, The guide dog association brought in a lab and a pug dog for the kids and we also had visits from a mermaid, Superman, fairy princess and someone dressed as a starwars character. Oh i forgot. She now only has a NG and a NJ tube in her nose and that is it. YAY! We can wear clothes now. Mind you they are all huge on her.

29/11/07 - 2/12/07

29/11/07 - 2/12/07 Well it was a pretty long week. We didnt find out what had caused her to have so many bradys. They thought it was infection but nothing really showed up in her bloods. Then we got a bit of gastric so we were isolated for 2 days but ended up just being from her milk. She was getting better and better by the day. It was great to see her doing well again. We also got to full feeds this week which is wonderful. 8mls per hour. They tried turning her pressure support down on the ventilator but she wasnt having a bar of it. So they thought it best they leave her a few more days to extubate her again. Finally they said we will try on the 3/12/07. If she copes well over night.