Skyla, Our Angel in Heaven

Below is our tribute to our beautiful little girl, SKYLA MANAWA TEMAIPI.
We love you and miss you so much hunny. You will be forever in our hearts. Not a day goes by that we dont think about you. I dont know what to do without you bubba. I miss you so much. Its so hard baby girl. But I know that your in a better place now darling. No more drugs, tubes or pain. I hope your having fun up there my little angel. I can see you now, running around in your beautiful dress chasing all the butterflies with all your friends. I love you Skyla. I cant wait til the day when my time comes to see my beautiful little girl again. I hope you will be there waiting for mummy. Until that time comes honey, just remember we will always love you.
Aunty Tash left a little note at your grave with some beautiful flowers. Ill read it to you. To Our Beautiful Princess
Fly high Skyla,
To the clouds above
Not too high Darlin,
We need your love

thankyou

21/06/08 I want to thank all who came to celebrate Skyla's life with us yesterday. It was a special day and we felt blessed to have so many family and friends with us on the day. A special thankyou to all Skyla's wonderful nurses that came. I couldnt believe how many of you came. It really showed how special our little girl was to so many people. For everyone else that couldnt make it, i know that you were all there in spirit, thinking of us that day. Thankyou. Thankyou for everyones flowers,cards and comments on her blog. She really bought so many people together. I havent got everyones addresses to send out thankyou cards so i just want to thank everybody from the bottom of our hearts.

Kristy, Joe, Blake and our little angel in heaven Skyla xoxox

Skylas funeral arrangements

Kristy and Joe warmly invite family and friends to attend Skyla's Funeral Service, following an overnight Tangi at the Uniting Church at 41 Coleridge St Riverwood. The sevice will take place on Friday 20th June 2008 appointed to commence at 12:30pm in the West Chapel, Woronora Cemetery, Linden St SUTHERLAND. Buriel will take place in the adjoining Karinya Childrens Section.

Thankyou for everyones thoughts and prayers. It means so much to us all.

Kristy and Joe

OUR LITTLE ANGEL

My sister took this picture of my beautiful girl after she had passed away. She sent it to me last night. I couldnt believe it when i seen it. I thought it was my eyes playing up on me. Can you see the shadow around her body. The angels came to get her and take her to heaven. Your an angel now SKYLA. No more pain my beautiful little sweetheart. We love you so much hunny. We are gonna miss you so so much darlin. We love you.

We are still working out the funeral arrangements today and ill let everyone know asap. We just dont know when she will be released as they will be doing an autopsy on tuesday so it may take a few days. Thankyou for everyones prayers, love and support. It means so much to us at this heartbreaking time in our lives.

Skyla Manawa Temaipi 13/10/07 - 13/6/08

13.6.08 I dont know where to begin or even how to write this. Our beautiful little girl lost her fight today, Friday 13th June 2008 at 10:15am. Today she grew her angel wings and became the perfect angel. She was so strong and so brave. Skyla you were a true fighter hunny bun. You fought and fought right to the very end. Today you were 8mths old to the day. You arrested again darlin and they tried and tried to get you back but it was just too much for your little body to take. They tried for 40minutes honey but it was just too much for you. After that they stopped bagging and resusitation on you and then they gave you to me. You passed away in mummys arms. It was so hard but im just glad that you had your mummy there with you when you got your angel wings. We had 8mths with our beautiful girl. They were the best 8mths of our lives. We were so lucky to have had you in our lives. Mummy, daddy and Blake and all your family and friends will never ever forget you Skyla. You will be in our hearts forever. We loved you so much Skyla. Your at peace now darling. Spread your wings and fly.
I just want to thank everyone for all there love and support through out this. It really meant alot to all of us. thankyou.

I will update again soon with Skylas funeral arrangements once its all set into place.
Kristy, Joe and family

Still having the occasional desat

9/6/08 On the 6/6/08 Skyla was moved to isolation as they thought she had gastric as she was having lots of runny poos. They did a few stool samples but they came back negative. I think its a combination of teething and antibiotics. She was moved back to her old bed space on the 8/6/08 as they were clear. She has still been having the occasional desat and needing bagging. She has had 4 more episodes since the 6/6/08. Sats in the 60s and 70s. They still seem to be with a poo and sometimes with suction. I have been learning to do the trachy tapes everyday and Skyla had been coping well with them but lately she has been going dusky and we are having to turn her oxygen up to anywhere from 30 to 60 and sometimes we have to give her a O2 breath of 100%. When she is settled she is on O2 25%, peep 6, rate 6, and pc above rate 6. It is slowly coming down which is great. You just never know with Skyla. One minute she is great and the next she is needing to be bagged as she totally flips out and has a episode. Its so scary. I just wish all these lung problems can just vanish and for her to be healthy so we can have our baby girl home with us. Skyla wil be 8mths on Friday 13th of June. Thats 8mths my little girl has spent in hospital. Its so not fair. She had her first tummy time session on friday. Her first one in a really long time. She didnt want a bar of it. Absolutely hated it and started crying. On Monday 2nd june her weight was 5.26kg. Thursday 5th june it was 5.1kg. We weighed her today and she weighed an amazing 5.57kg. I couldnt believe it. She had put on so much weight. We did put her milk up from 28mls p/h to 30mls and we increased her calories from 28 to 30. She has been pretty positive with her fluid balance but she doesnt look puffy at all. Her tummy is a bit distended though but i think that has to do with all the wind she has. She definatly takes after her father in that department. HEHEHE. Thanks for your prayers, please keep them coming.

Kristy

Another Rough Night

6/6/08 Skyla had another rough night last night. At 11pm she dropped her sats again and had to bagged. She was blue and mottled. They had to give her a IM dose of midazalum to calm her down. She did it again at 6am. Same thing, mottled, blue and had to be bagged again. Sats 50%. They gave her another IM dose of midaz. Again it was after a dirty nappy. Her temp got up to 39.3. They have also upped her dose of clonidine from 5 twice a day to 10 three times a day. They are hoping this will keep her nice and calm. They have also started her on a dose of oral antibiotics just incase she is brewing something. Please pray she isnt as she is impossible to get a line into her, especially if she gets alot worse. Please keep the prayers coming for Skyla, she really needs them again.

Turned blue and more temperatures

5/6/08 I had gone home last night as Skyla had been having a great day. I called her nurse this morning at 6am and the said she had a good night but has been partying since 4am. Wide awake and thrashing around. I arrived at the hospital this morning at about 7 50am. Just as i pulled in to the car park i received a phone call from Skyla's nurse she had through the night. I freaked out when i heard her nurses voice. I new something was wrong straight away. Before she could really say anything i just said "is she ok". Our nurse Gail said "yes, but she did just have one of her blue spells". She had a dirty nappy (Skyla cant stand a dirty nappy), and went blue and mottled. Sats had a trace in the 50s. Wasnt a good trace but she was definitely blue. She was bagged for about a minute. She was given some chloral hydrate (sedative to calm her down). I arrived about 30min after it happened. When i seen her she was pretty agitated and crying. As soon as she seen me she smiled and calmed down. Her sats then were 100%. I could only stay with her for a minutes as the Dr rounds were just about to start. I didnt want leave but i had too. The rest of the day she was very unsettled and she then had a temp of 38.8. She was given panadol and it came down to 38 and pretty much stayed there for most of the day. I am really worried she is brewing something again. Please pray that she can just stay better and for these temps, blue spells and infections can stay away. She has been through so much in her little life. She doesnt need anything else. Please keep Skyla in your thoughts and prayers as she still needs them. Thank you

Her Ist outing out of ICU since Trachy

3/6/08 Today is the beginning of gold week. A major fundraising event for the hospital. All this week we will be having lots of celebrities come to to the hospital to meet all the sick kiddies. It really puts a smile on all the kids faces, even the parents. Today we had visits from HI 5, sponge bob square pants and Brian McFadden. I was lucky enough to have a photo with him. He was really nice. As they didnt come in to ICU, they were unable to meet our brave little girl. At about 2pm i got some great news. They said Skyla was able to go for a walk in her pram. I nearly cried. Her only time in a pram was for about 10min on xmas day and thats been it, and she was asleep for that. I was so excited. As i didnt have my pram at hospital, we used the ICUs pram and off we went. We first went around ICU twice then we were allowed to leave ICU for the first time in a long time. She was wide awake and looking around. She was loving it. Even though we only ventured out down the corridor, it was great just being outside the ICU. I pushed Skyla and the nurse had to push the ventilator next to her. Its hard work but so worth it. We even bumped into sponge bob. Skyla wasnt interested in him one little bit, but oh well. We sure did have fun.

Improving Again

1/6/08 Skyla is getting better by the day. She does still have lots of secretions though. Other than that, there are no more temperatures and major desats. She does desat now and then but that is because she is needing a suction. She did have a canula in her hand but was taken out yesterday as it was leaking and her hand swelled up. She is now on oral antibiotics though her gastrastomy tube in her belly. They plan on stopping them on tuesday. Her vent settings are O2 30, peep 6, rate 12 and pc above peep 8. We are hoping to get her off the rate soon which will then mean she is on cpap pressure support. We weighed her the other day and she is now 5.2kg, 11.44 pounds. She is putting on weight but not as quick as we would have liked but at least she is moving forward. She is now on 28mls p/hr of elecare. Up from 26mls p/hr.