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

Skyla Manawa Temaipi 13/10/07 - 13/6/08
Click on pic of Skyla to go to beginning of her life story. Then scroll to bottom of page

Friday, December 19, 2008

What Name do you like best?

Just after everyones opinion on a few names i like. Not saying we will pick one of these as something else may come up. Out of them, there is one name that i really really like. Not saying which one though. There is a poll on the right. Please vote if you can. Thanks

Thursday, December 11, 2008

Our little boy sent from our beautiful angel SKYLA

Hi everyone, well i had my 18wk Morph scan today and everything is fantastic. They got a good look at his heart and all looks good. The sub chorionic hemorrhage that i had seems to have disappeared which is a big relief. They checked to see if he had 2 collarbones, i know that sounds weird but Skyla only had 1. Well he has 2. And no CDH!!! I am so happy. They also did some 3D pics of our little guy today. I ended up taking a photo of them with my phone. I am only 18wks 5days but the 3D pics turned out pretty good considering how early i am. There is two pictures of his face and an awsome one of him kneeling. It looks really cool, oh and a picture just to prove he really is a boy. LOL. They also cancelled the fetal echo that was planned for tuesday 16th Dec and made an appointment for Jan 20th, i will be 24wks by then so the cardiologist should be able to get a good look then but as far as they were concerned today, everything is perfect. Yay.

The closer it is getting to christmas the harder it seems to be getting. I am really missing my baby girl so much. Next Monday is my birthday too. Last year i had my little girl here with me and she was doing so well. We were at the ward and she wasnt even on any oxygen. We were thinking we were going home. God how i miss her so much. We love you Skyla. Thankyou for looking out for your little brother. I cant Wait til he is older so i can tell him all about his beautiful big sister SKYLA. What a brave girl you were and how strong you were. He will be so proud. We all are. Miss you bubba and we love you so much. Keep looking out for us up there. Cant wait til i see you again. Love mummy. xoxo

Friday, December 5, 2008

A Star In The Sky

Just after we lost our beautiful girl, 2 of my best friends got us a gift. They told me and Joe about it the day we buried Skyla. It is her very own Star In The Sky. Here are the co-ordinates.

Libra RA 15h 18m 38s D-13' 59'

Thankyou so much Jenni and Marissa

Thursday, November 27, 2008

27TH November- A Big Day

Today was a really big day for us, and a hard one at that. We met with Skyla's Dr and social worker at 1pm to get her autopsy report. It was still Pulmonary Hypotension episode which caused her to arrest. Although they didnt find a syndrome or genetic problem they still think she did have one but just couldnt put a name to it.
Now onto our news. We are having a BABY!!!!! And a healthy one at that. We had a scan today. I am 16wks 5days. I am due May 9th which is one day before Mothers Day. The stomach and everything is exactly where it should be. Yay no CDH. I am so happy. They still have to check the heart out in more detail but so far everything looks great. Now onto the sex, GIRL or BOY. I asked them and they are 90% sure we are having a BOY!!!!!!!!!! Now all we have to do is come up with a name for our little man. I told Blake today that he is getting a little brother. He was happy but i know he really wanted a sister. The first thing he asked me was "Is he Healthy". Thats all we want. Then he gave me the biggest kiss and cuddle. I knew the baby had to be healthy especially with a big sister in heaven watching over us all. Thanks Skyla, we love you and miss you so much bubba. Thankyou for sending mummy, daddy and Blake a healthy bubby. We love you.God how i wish our little girl was still here to make our family complete. As the days pass, it doesnt get any easier. I miss her so much. Having a new bubby on the way is never gonna replace our little girl. I hope it does help to ease our pain a little.

Wednesday, November 26, 2008

Back at Sydney Childrens Hospital

Tommorrow me and Joe have to go back to the Childrens Hospital at Randwick to get Skyla's autopsy report off her Dr. Finally. We know she had a pulmonary hypotensive episode which caused her to go into cardiac arrest but her Dr wants to go through everything with us and give us the final report. I have known about this since last week and as much as i want to get this over with. Im a bloody mess. I just know i will probably be crying through the whole meeting. I am dreading it. My emotions are all over the place. I will let everyone know how it goes tommorrow and if they found anything that i may not know about. I also have some other news that i will tell you tommorrow once i get back from the hospital. I am hoping my news that i have to share will be good news. Please pray that it is.

Another CDH angel, Baby Gretchen Falhaber, born 12th Nov 2008 passed away 21st Nov 2008 Her CP is BabyGretchenFalhaber Please send some love and support to her family at this sad time.
Another CDH baby born, Johnathen Alexander born 18th Nov and placed on ECMO the following day. Please keep him and his family in your thoughts and prayers.

Friday, October 31, 2008

Heaven gets another Beautiful Angel

Reese Renee Kostjuk30/10/07 - 30/10/08
Heaven recieved another beautiful Angel on 30th October 2008 at 3pm
Reese was taken to heaven on her first birthday. Born on 30th October 07 with CDH. Spent her whole life in hosptial. A fighter til the end. Please pray for her beautiful family at this sad time.

Sunday, October 26, 2008

Blake is doing the Guard Of Honour for the Rugby League World Cup Australia vs New Zealand game

Just a quick note, i have some exciting news about Blake. Tonight is the opening ceremony of the Rugby League World Cup and Blake's rugby league team has been chosen to be in the Guard of Honour for the Australia vs New Zealand game. We are so excited. What an honour. I will try to take lots of photos and update whan i can. Dont know if they will show him on the TV but he will be wearing his Hurstville United clothes which are blue and white. Photos to come. Keep a look out for him. Im sure Blake's little sister will be looking down and will be so proud of her big brother.

Thursday, October 16, 2008

Our Angel Is Watching Over Us

On Monday 13th October, Skyla's Birthday, my mum and dad went down to our holiday house as we are getting new tenants for the house. On the Tuesday 14th October they headed off into town to do a few erands. To get into town they have to drive on the highway. On there way, they were doing about 90km p/hr when all of a sudden a car coming the other way spun out of control doing about 100km p/hr and right into them. They had no time to move out of the way. The car was ridden off as was the other car. They were both ok, thank god. My dad seriously thought that that was it. Their time was up. He cant believe they escaped with no injuries. The other driver was a 23yr old who escaped serious injury too. They were so lucky. Thankyou bubba so much for watching over nanny and poppy. You really are our guardian angel. Love you hunny. Miss you so much. Love mummy

Wednesday, October 15, 2008

Tuesday, October 14, 2008

Balloon Release Skyla's Ist Birthday


Your family Skyla, we miss you so much bubba. We love you. Happy Birthday Princess

Your family back in New Zealand Bubba, They love and and miss you

My cousin Karen's kids Aimee and Brendan from Perth WA releasing balloons for our angel. Thankyou

My friend Amanda releasing balloon for our princess, Thankyou

Jen, Ryan, Shane, Jens mum, a family friend and Skyla's best friend Matilda releasing balloons for our princess, Thanks guys

This balloon release is from Babies in the Sky friend Vicky and her beautiful Angel Aubrey, all the way from Crown point, Indiana USA. Thankyou so much

Monday, October 13, 2008


Today is your 1st Birthday SKYLA, how i wish it were different. We were meant to be having a beautiful party hunny, lots of presents, lots of fun and laughter, lots of babies and friends joining in on your special day. So far all mummy has done is shed tear after tear after tear. I miss you so much. I cant believe its already been 1 year. Its been 4mths since you left us. Thats already been half your life without us. Its not fair.
Yesterday we did a little balloon release for you at the cemetery because nanny, poppy, Aunty Tash and Zaya couldnt make it today. I hope you enjoyed your balloons. We were planning on coming out to see you today at 12pm but Blake has school today, 1st day back after the holidays so we will be coming to see you at about 4pm. Sorry we cant make it sooner. We will be bringing lots more balloons. I bet you and your little friends cant wait for more balloons. They are so much fun. Also some friends and family that couldnt make it have done there own balloon release just for you. I told them to take photos so mummy will put them up as i get them. You will love them. I hope that your friends and family have thrown you a big party in heaven my darling. I just wish we were there with you. I just want to hold you and kiss your beautiful face again. We are so sad without you. As i type this i can hardly see the computer through all mummys tears. Well i hope you have a good birthday today darling, im sure you will have lots of fun with your friends and i cant wait to see you when we get there. We love you baby girl. We miss you so much.

Happy 1st Birthday
We wish we could see your beautiful face
We wish you were here today
We would laugh, play and sing Happy Birthday
Tearing the wrapping paper off your toys
playing with all the girls and boys
Just learning to walk, we'd see
But all these things aren't meant to be
You're spending your birthday in heaven above
So, all we can do is send our love
Release some balloons, take flowers to your grave
To celebrate your birth and the life they couldn't save
Try and try as they may
You're not with us today
We hope heaven throws a party so grand
And helps us all to understand
Today as we recall your birth, we smile
And be happy you were with us for a while
A life short-lived, gone too soon
We sing "Happy Birthday" as we send a balloon
We send it up and far away
In hopes it reaches you today
For with it we send a wish with love
Have a Happy Birthday In Heaven Above...

author unknown

Tuesday, October 7, 2008

Skyla's 1st Birthday, Balloon Release

In less than 1wk it will be my baby girls 1st birthday. Monday 13th October she should of been turning 1. I should be organizing a big beautiful party for her and buying her lots of beautiful presents. Its not fair. I miss her so much. The closer its getting to her birthday, the harder it seems to be. We have decided that we want to do a balloon release for Skyla. It will be on the 13th October at 12pm. It will be in the Karinya Children's section of Woronora Cemetery at Skyla's grave. As it is a Monday i know people may not be able to get the day off so feel free to come on Sunday if you like. We will be there about 1pm. To those people that are unable to attend, some people have mentioned that they might do their own little balloon release. I thought that was a fantastic idea. If you do that can you please take photos and send them through to my email please so i can put them up on the site. My email is . Thanks.

Sunday, September 14, 2008

3 months Angel

Yesterday marked 3months since our beautiful little girl went to heaven. It is still so incredibly hard. It only feels like yesterday she was here. We miss her so much. I think about her nearly every minute of every day. The only good thing is that i know that she is happy now. Free from pain and suffering. We will always love you bubba. You are forever in our hearts. I hope you are happy up there Skyla. Love you and miss ya darlin.

Love mummy xoxoxox

Sunday, September 7, 2008

Happy Fathers Day, Daddy

To My Daddy

A gift for you on Fathers Day,
What on earth could it be?
I know the gift you really want,
Is to once again, have me.
Or perhaps the gift of understanding,
To make sense of a senseless loss.

I'm sorry, my dearest Daddy,
But for those gifts, you must talk to the boss.
The gifts that I can give today,
Are memories, both sad and sweet.
From the touch of your hand on Mummy's tummy,
To my tiny little feet.

Remember the joy you felt inside,
When you found out you would be my Daddy?
The great big smiles upon your face,
You were over the moon, you were so happy.
Remember when you felt me move,
The wonder and love you'd feel?
Remember it today Daddy,
It just might help you heal.
Remember the little cuddles we had,
And the moments that we shared.

Remember my little nose,
And the colour of my hair,
I love you dearest Daddy, you know that this is true.
Just keep your memories of me alive,
And I will always live in you.

Author unknown

I love you daddy, I miss you so so much. I know that you came to see me today, with mummy and Blake. Thanks for my beautiful flowers.

Love your little angel
SKYLA MANAWA xoxoxoxoxoxox

Thursday, August 21, 2008

Heaven gets another Angel

William Ethan Morgan 19/08/08 - 20/08/08
I am deeply saddened this morning as i woke to an update that baby William Ethan Morgan had lost his fight against CDH. Please pray for his beautiful family as they grieve for their precious son. It brought back so many memories of the day my beautiful girl SKYLA became an angel too. We really need to find a cure for CDH. CDH is devastating. We have lost too many babies in the last three months. Skyla, Seth, Daniel and now little William. We have lost too many over the years. Life is just not fair. Please also pray for baby girl, Elliott Arcile Reed . She too was born on 19/08/08 and is begining her fight against CDH.

Monday, August 4, 2008

My New Blog


For those who do not know i have created a new blog.
It's about my family trying to move on after the loss of our precious little girl. I will try and update when i can but at the moment i am having trouble moving forward. It is very hard. People keep telling me she is at peace now and in a better place. I know that, but she should be with us. I feel like i failed her, i couldnt protect her and save her. Im so sorry hunny. Sorry we are not with you anymore. We miss you so much. I wish i could see you in my dreams. Daddy says you and him play together in his dreams nearly every night. You have no trachy or feeding tubes and you're in your beautiful butterfly dress. You talk, laugh and play with daddy. I wish you could come into my dreams. I just relive that day over and over. We love you darlin, and miss you so so much.

Thursday, July 24, 2008

Skyla's Results

Today i rang Skyla's pediatrician to see if her autopsy results were in. He told us the main reason she passed away was from a Severe Pulmonary Hypertension episode which then caused her to go into Acute Heart Failure. He said her Lungs were small but not small enough that they were incompatible with life. Her Lungs showed patches of infections but not from a new infection. They were still healing from her older infections. It showed that she didn't have severe reflux. Her Kidneys were fine but her Liver was very swollen but that would have been caused by her Cardiac Arrest because all her blood was rushing to try and save her brain and heart. We wont get the final report until September i don't think. It will go into alot more detail and we will be having a meeting at the hospital so they will go through everything with us then.
Today i made an appointment to go and see a councillor, don't know how it will go but i guess it couldn't hurt. Last night i really lost it. I was in bed watching TV and i just started bawling my eyes out. I must of cried myself to sleep because next thing i knew it was morning. I wish i could dream about her. Instead i re-live the day over and over and over. The worst day of my life. Friday 13th June 2008.

Prayers need for my friends baby ZAC. He is in ICU where Skyla was. He is a very sick little boy at the moment. He has Wiskott Aldrich Syndrome. He has No immunity and a blood disorder. Today he is meant to be having Heart surgery. Please send some prayers his way. His blog is There is a link to his site in babies blogs on the right.

Friday, July 18, 2008

Two More Angels In Heaven

The last few days have been tough. Life is just not fair. Two more CDH babies got their angel wings. I was following there stories throughout Skyla's journey. Baby Seth was born a week after Skyla had passed and little Daniel was 7mths. It is so heartbreaking seeing other parents going through what we went through. CDH is devastating. Life wasnt meant to be like this. With all the hard work of researchers, surgeons and critical care teams the mortality rate of CDH only has a survival rate of 50%. I cant wait til the day when there is a major breakthrough and no one has to watch their child go through so much pain and suffering. Some babies do survive this horrible birth defect, but some people including us have to suffer the loss of loosing a baby to CDH.

Baby, Seth Van Dyke, 25/06/08 - 16/07/08

Baby, Daniel Bradley Gallagher, 14/12/07 - 17/07/08

They were both two strong little boys, now ^angels^ in heaven with our little angel ^SKYLA^. I hope your having fun with your new friends hunny. We love you and miss you more and more everyday.

Sunday, July 13, 2008

One Month Already

13/07/08 Today, it's been one month since you got your angel wings. It has gone so quick. You would have been 9 months old today hunny. It only feels like yesterday you were here with us. We miss you so much. I thought i was dealing with loosing you ok but the truth is darlin, i cry my eyes out everyday. I think of you all day everyday. Your all i can think about. I just want to be able to hold you, smell you, cuddle and kiss you again. I know that your not in any pain anymore up there in heaven, but i wish you were here with us, with your family, where you belong. We are lost without you. It just doesnt seem to be getting any easier. It seems to get harder everyday. We came to visit you today. Mummy and daddy bought you flowers. I hope you liked them. We seen that you had a visitor during the week. Someone bought you some yellow flowers and a pink teddy. The teddy was cute. I wish they left a note, as i have no idea who they were from to thank them. It was lovely. I hope your having fun up there baby girl. We love you and miss you more and more everyday.

Love mummy, daddy and Blake

Thursday, July 10, 2008

Blake's Tribute to his Beautiful Sister SKYLA

Blake made this video for you Skyla. Mummy helped. Blake was so proud of you darlin. He misses you so much, we all do.

Love your big brother BLAKE

Wednesday, July 9, 2008

The Day Before You Became An ANGEL

These were the last photos i took of my beautiful little girl SKYLA MANAWA TEMAIPI. They were taken the 12/06/08. They day before we lost you. You were going so well darlin. Mummy hadnt taken any pictures of you and me in a while. Im so glad we took them that day. My last photo of you and me i was kissing you. The other photo its like you were saying goodbye. I miss you so much baby girl. Just remember we will always love you. You will be in our hearts forever. I hope you are watching over us up there. I cant wait til we see you again. We miss you

Love mummy, daddy and Blake

Monday, June 30, 2008

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

Saturday, June 21, 2008


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

Wednesday, June 18, 2008

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

Monday, June 16, 2008


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.

Saturday, June 14, 2008

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

Monday, June 9, 2008

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.


Friday, June 6, 2008

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.

Thursday, June 5, 2008

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.