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

Wednesday, December 26, 2007

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.

Friday, December 14, 2007

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.

Thursday, December 6, 2007

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.

Wednesday, November 28, 2007

To the Ward and back to CICU again. INTUBATED AGAIN

26/11/01 Skyla was having a really good morning. We were set to go to the ward at 430pm. At about 2pm she started having a few bradys (her heart rate and sats would drop right down). They continued and the Drs said she would still be ok on the ward as they weren't real bad ones. I was a bit worried but we still went. We finally got to the ward about 430pm and she started doing them every minute or so. Over the next hour or so she would of had close to 30 bradys. The nurse couldn't attend to her patients as she was unable to leave skyla. We phoned CICU and they said we can come back but not for about 40min or so. I was very glad to be going back as i was really worried about Skyla. We got back there (cicu) and they came more frequent and were getting longer and longer. She would stop breathing for nearly 20seconds at a time. They tried giving her a dose of caffeine as it is good for apnea in little babies. In the end they thought it best the intubate her again. So my little princess is back on the ventilator again. They think its another infection. So she is back on morphine and midazalum again. They then did a lumber puncture. They got the results for that and there was something there. It was a contaminated tap (had some blood in it) so they thought it best they start treating her for meningitis, just in case. The definate result wont be back for 48hrs. To be safe they started her on 3 doses of antibiotics to cover a range of things. They think she is septic. So she is on Cefotaxime, metronidazole and vancomycin (not sure of spelling). They also took out her pic line in case the infection was from that. Ventilator O2 30, peep 5, rate 30 and pc above peep 15. Morphine on 30

27/11/07 I rang from my room upstairs at 5am to see how she was. They said she was kind of stable and that she was a bit stiff as they had messed around with her so much that night. She remained pretty unsettled all day. She was very jittery. They thought they were little seizures so they did a EEG and a head ultrasound. They came back normal thank god. So there was no brain damage or anything. She also had to have another blood transfusion and they put in another arterial line. They stared her feeds again. 1ml per hour. Ventilator O2 50, peep 5, rate 30 and pc above peep 15. Morphine down to 20

28/11/07 Still abit twitchy today. They say she was awake most of the night. Wide awake lookin around. So she slept most of the day. Had a few temps today. Highest was 38.2 . Blood cultures that were taken yesterday were so far so good. Lumber puncture showed it wasn't meningitis. Blood gases were really good. They are still not sure what is wrong and might not even be able to find out. up to 2mls of milk at 6am. They are hoping to get to 4 to 5mls of milk by tomorrow so i hope she doesn't vomit otherwise they will have to put in another central line for the TPN and LIPIDS. The central lines increase the chance of infections so im hoping she tolerates her milk. The cardiologist came round to check her out. They said her heart sounds good but they would do a heart echo on her tomorrow or so just to have a better look. Ventilator O2 25, peep 5, rate 10 and pc above peep 15. Morphine down to 10 and milk up to 3mls at 6pm. So far no vomits. The Drs are hoping to take her off the ventilator within 24 to 72 hours. I hope my baby will be ok. She is one tough little girl my little Skyla. Keep fighting darling.

Sunday, November 25, 2007

Off to the Ward Tomorrow

25/11/07 This morning the Dr told us she might go to the ward today or tomorrow. How exciting but scary all at the same time. My little girl had a few vomits again today. Still off morphine. No withdrawals which is great. Still on 1ml of milk per hour though. They say it will take time. She did desat a little bit today. Went a little bit of a funny colour so we put the oxygen on her for a little while. Mind you hardly any extra oxygen at all though but it did help her. We didnt go today as no bed for her but if she doesnt play up and misbehave throughout the night we will probably head off to the ward tomorrow morning. YAYYYYYYYY my baby girl is getting better. Thats a pic of her proud big brother Blake. He cant wait for her to come home. He loves her so much.

Saturday, November 24, 2007

Off Morphine

24/11/07 Had a good night until i came in this morning about 6am. No vomits all night but as soon as i get there, she vomits. And again and then a shitty nappy just in time for mummy. After the Dr rounds today we came back to find that they have turned her off morphine (Yay) hopefully she wont have any more withdrawals. And the nurse tells us that she is a candidate for the ward. If they get busy in there, she will be well enough to go to the ward. (fantastic but scary at the same time). She has 24hr 1 on 1 care here but at the ward its 6 kids to 1 nurse. So by that i think we will be at the ward before the week is out. Cant wait. We weighed her today. She now weighs 2.15kg. Lost a little bit but she has also lost the ventilator tube too. So she is going pretty good considering she isn't tolerating her milk. She is still on TPN and lipids whilst not having milk. The photo above sort of shows you how small she really is. Thats her dads hand pretty much covering her whole body and the other one is her whilst being weighed.

Turned blue

23/11/07 The specialist didnt come see her today. She has been vomiting again so feeds had stopped. She is having a contrast study today down at xray. Its when they put some dye down her NG tube so they can see by xray where abouts it goes too. Just to make sure its in the right spot. She has been breathing all on her own today but whilst down in xray they had to put in a new tube and it got a bit too much for her. As we were leaving xray they noticed her going blue as her heart rate stopped. They quickly gave her some oxygen. It took her a little while to get her colour back and then she did a massive vomit. It scared the hell out of me again. One minute she is fine and the next minute your going down hill. We came back to cicu and she was fine. Eyes wide open like nothing had happened. Cheeky little miss she is.

Cleft Palate

22/11/07 Got another curve ball thrown at us today, but this one she has had since birth but was never picked up. My little girl has a cleft palate. I was giving her a cuddle today and she yawned and i thought i seen a hole. Told the Drs and they had a look. i was right, it was. What else will be thrown at us. Skyla has been through so much. This means more surgery for her. Luckily as far as the Drs can see, it is not a real bad one but i am waiting to see the specialists to come and have a look at her. Hopefully monday.

Wednesday, November 21, 2007

Skyla's due date today, first bath, clothing and EBM

21/11/07 What a day for skyla today. Today was the day she was due to be born. She is 39 days old today. Look how far my little princess has come. Six weeks early, Two major operations, two infections, Five blood transfusions and extubated, all before her due date. What a fighter she is. You are so brave my darling girl. You were definately meant to be here with us. We love you so much darlin. Wont be long now and we will be off to the ward then home so we can be a real family. We had our first bath today. Skyla wasnt too impressed. Cried a bit but not too bad. I then got to put a dress on her. She looked so cute. It was actually a top but for her its a dress as she is still very small. We started back on breast milk today 1ml per hour. We just got to take it slow. Today she was on cpap (the mask) for 4hrs then off for a couple of hours. We got to be careful she doesnt wear herself out otherwise we may have t intubate again. Mind you she is doing really really well. Without any oxygen help her sats are pretty much staying on 100% most of the time. Tomorrow they are gonna try her without the mask so we will see how she goes.


20/11/07 My beautiful little girl was extubated this morning at 9 30am. I went home for the night thinking they were to extubate at 10am. I arrived at 9 15am to find the Dr setting up. Was just in time. Two big coughs then the tiniest little sound. She sounds like a little lamb. It is so cute. They put her on cpap just to give her a bit of help. She is going really well. We took the mask off her to give her face a little clean. She stayed on 95 to 100% sats without any oxygen for about 30min. Had the best cuddle without the tube in. It was great. She had her first ever cuddle with her big brother Blake. And boy did he love every minute. We also had our first family photo.

Monday, November 19, 2007

Not quite ready

19/11/07 I got to the hospital at 9am this morning. Her pressure support was on 2 then turned down to zero. She was doing really well. They gave her some steroids to help her lungs. She lasted for about 4 hrs breathing all on her own with the tube still there, it just got too much for her and she started struggling a bit. They decided it best they wait til tomorrow and try again. So hopefully all goes well tomorrow, about 10am they reckon. They will give her some more steroids at 6am. They have the bubble cpap ready for her just incase she needs a bit of help. The surgeons came round today and have decided to start her EBM (milk) on wednesday morning. Just hope we have no more setbacks.

Sunday, November 18, 2007


18/11/07 I left before Drs rounds today as we had Blakes Rugby League presentation. He got best and fairest for the third year in a row. Well done Blake. We got back to the hospital and realized they had weaned her ventilator nearly right down. I asked the nurse if there was a plan to extubate her soon. I was so excited as she said Monday or Tuesday. We asked the Dr when her came round and he reckons it is gonna happen tomorrow. YAYYYYYYYY!!!!!!! I am so excited. I just hope it all goes to plan and Skyla is really ready for this next big step. They say she might need cpap for 24hrs or so, (a mask giving her a little bit of oxygen) but the tube will be definitley coming out. Fingers crossed it happens tomorrow. I cant wait. I will definitley have lots of photos to upload soon. YAYYYYYYYYY

Getting better

16/11/07 Now that the feeds have stopped Skyla has stopped vomiting. They will keep her off milk for 7 days the Drs say. She has started antibiotics but when i came in today she was very unsettled. Because they had started her on oral morphine and then started to vomit she wasnt absorbing the morphine so she was very shaky all day today. My poor little girl is having withdrawals from it.

17/11/07 They removed her central line today and put a long line in her arm. She is back on the IV morphine so she should settle soon. They didnt wean her today as she was a bit unsettled. Didnt get a cuddle today as she had a busy day and left her to rest.

Friday, November 16, 2007

Our next challenge

15/11/07 I rang the hospital this morning to see how Skyla went through the night. They said that the feeds have been stopped cause she had lots of vomits but this time there was blood in them. Came straight to hospital. Drs think that maybe the NEC is back. (bowel infection) but they cant be sure. Did blood test, they came back ok. She did one poo. No blood in that. Her tummy seems soft and she has no temperature but they arent sure why the blood is there. Her xray showed a pool of something in her abdomen. So at the moment they arent real sure. The plan is to start antibiotics just to be on the safe side and no milk for a few days again, maybe 5 to 7 days. Hope she will be ok. We were so close again to leaving intensive care and then we go back down. Its so hard. The Drs did warn us she would go up and down but its hard coming so far and then this happens. Not sure when ill update next as will be staying at the hospital for the next few days.

Thursday, November 15, 2007

Lots of vomits

15/11/07 Started out a good day. Up to 4mls of EBM. Pc above peep down to 7 on ventilator. Hopefully only a few days from being extubated. The drs decided to re tape her tube as it is getting loose again. No rock this time. Started to give her morphine orally, down her nasal gastric tube today. Didn't go down well. Lots of vomits. She had about 6 vomits today. Stopped feeds for a few hours. Then went back to 1ml per hour. Going home for the night tonight. Hopefully when i get in in the morning there will have been no more vomits. Keep ya posted. I will try to update more often. Sorry just so tired when i do happen to come home.

Back on feeds

11/11/07 We started back on EBM today. 1ml per hour. Had a good day.

12/11/07 Milk still 1ml per hour. Pc above rate down from 12 to 10 on ventilator. Had 2 vomits, stopped feeds for a bit. Wide awake today.

13/11/07 One month old today. The time is going so fast. Came in this morning to find no Skyla. They had moved her down 3 bed spaces. I walked straight passed her and didn't even notice.

14/11/07 A sad day today. A little baby passed away through the night. Poor little bubba. It breaks my heart. It is so hard being in ICU. You see so much going on. As much as you feel for the parents of other children in there your just so grateful that your own child is still here with you. Its really hard. The Drs and nurses try there hardest in there. They perform miracles, but they cant save everyone. It must be hard for them too. But they do their job and get on with it. Its all they can do. Skyla up to 3mls of milk per hour. Weaned morphine down today. Weighed her 2.02kg.


10/11/07 Yay, i come in this morning to find my little girl on cpap pressure support. It means we are still on the ventilator but she is breathing on her own. The machine just helps to give her breaths that extra bit to make the breath a little bit bigger. Next is to extubate. Cant wait. Hopefully not too far away. She had another canular put in her right foot because she needs another blood transfusion. Weghed her today. She has hit the 2kg mark. WooHoo!!!!!!! We're getting bigger.

7/11/07 - 9/11/07

7/11/07 Had a good day, 02 down to 25%, peep 5, breaths per min 15, and pc above peep 7 on ventilator. Making progress which is good. Still off feeds

8/11/07 What a naughty girl our Skyla has been through the night. She has pulled her nasal gastric tube out twice during the night. Nurse Sian had to be the big meany putting it back in. Just kiddin Sian, I know it had to go back in. Later on in the day whilst having a cuddle we realised her ventilator tube was a bit loose, so they had to re tape it again. They had to give her Rockaranium (not sure on the spelling). A muscle relaxant. Next thing we new Skyla had turned pale as a ghost. the ventilator stopped working and they had to bag her. So scary. It happened so fast. They got her colour back and she was fine but they ended up having to bag her for about 20min or so.

9/11/07 Awake most of the night again. Having a good day nice and settled. Weaned morphine down again. Start back on EBM (expressed breast milk) on Monday. Drs happy with her and that infection is alot better.

Tuesday, November 6, 2007

Another blood transfusion

5/11/07 Had a settled day. Her haemoglobin was low again so we had to have another blood transfusion. Her 4th one so far. Bought her a head band today, it looks so cute on her. Her xray this morning showed more improvement, so she is beating this infection slowly. They said it might take a while. At least we are moving forward.

Her beautiful little face

4/11/07 Had an xray this morning. Its looking a bit better already. The drs put in another central line today. This time in her groin. They had to give her some muscle relaxant so she wouldnt move and they also changed the tape around her tube. I finally got to see her beautiful little face. Its only taken me 22 days. She is so beautiful. God, she look like her father. After our cuddle today we weighed her again. Now she is 1920gms. Wow we are nearly hittin the 2kg mark. Look out u ova hundees shes a comin. (for you fellas in NZ)


3/11/07 What a morning its been. Well our little princess has had 10 brady cardias thoughout the night and a blood transfusion. She also has a temp of 39. They think she might have an infection, but dont know where its coming from. Today is gonna be a very busy day. They started out by taking out her stitches from heart surgery, took out her central line near her neck. They also took out her lines in her hand and put one into her foot. They then decided to give my little girl a lumber puncture. My poor little baby. She has been through so much. They did xrays and thats when they found out she has a bowel infection which if it gets worse she may need even more surgery. They have now stopped all feeds for about 10days. Put her on antibiotics and turned up her ventilation. What else could go wrong. Then they said that they needed to get blood. They had 3 attemps in her foot then 3 in her hand and still couldnt get any. They finally got it on the inside of her elbow. My babys a bloody pin board. It breaks my heart seeing her go through all this. What more can a little bubba take. She should still be inside me for another 3wks.

Full feeds

1/11/07 More settled throughout the night. No brady cardias today. Few vomits though. Milk stopped for a bit. Milk back to 3mls per hour.

2/11/07 Good day, had a little cuddle. On full feeds today. TPN and lipids off. 8mls per hour.


31/10/07 Had a few more brady cardias throghout the night but had a settled day. No cuddle today. Im a bit scared too after yesterday. 1 vomit today. Rate of ventilator down from 12 to 10.

Brady Cardia

30/10/07 Come down this morning. The nurse said she did the biggest poo. It was everywhere. She should have given that one to daddy ay. Milk up to 7mls now. Had a cuddle. It was going good until she decided to turn a bit grey on me. It scared the life out of me. The nurses put her straight back in bed and her sats started to drop. They gave her a suction which seemed to bring her sats back up which was fine. She had a few brady cardias which is when her sats and heart rate drops real low. The Drs think she is having withdrawals from the morphine they have given her. They put her on some anti withdrawal medication.

In Incubator

29/10/07 Weighed her again today as we thought they made a mistake about her weight. She weighs 1840gms now so she has put a little bit on which is good. Up to 5mls of milk now. Were getting there slowly. Had a 2hr cuddle today, loved every minute. We moved into an incubator today. Its alot warmer for her so it should help her to grow. I will put some photos up soon. Had a really good day. Nice and settled.

Sunday, October 28, 2007

Skin to skin cuddles and daddys 1st cuddle

28/10/07 Skyla had a sponge bath today. She loved it. Her hair went all fluffy. She has so much black hair. Got a good look at her eyes today. At the moment they are blue grey. Hope they stay that way. Her milk has been increased to 3mls p/hr and she is absorbing it. Thats daddys girl alright. The told us we could have a cuddle today but this time no pillow. Skin to skin. I was so excited. The nurse said i go first to warm her up then daddy can have a go. It was beautiful. It was the closest i have ever been to her. Its only taken 15days. Sooner than i thought really. She was so peaceful, lying on her tummy on me. Her heart beating against mine. I loved every minute of it. So did she by the look of her. Then came daddys turn. She looked so peaceful with Joe too. It didnt take her long to settle either. I could tell he didnt want to let her go. We took lots of photos of our special moment today. I will upload them next time im home as i have to get back to the hospital soon. I dont like leaving her for too long. Her weight at birth was 1710gms, now she is about 1470gms, so we lost abit of weight. Hopefully once she starts feeding better she will start to stack the weight on. Oh i almost forgot, we did her foot prints today. Couldnt do her hands as they are all taped up at the moment. Hopefully soon though.

2wks old today

27/10/07 My little girl is 2wks old today. Had a good day until about 9pm that night. Her saturation levels started to drop. They did a few suctions then she would be fine and then next minute she would be struggling again. They did a blood gas. Her carbon dioxide was a little high so they gave her a bit more oxygen. She was still havin trouble so they ordered an xray just incase her lung had collapsed. That was fine. It turned out to be the probe on her. She kept bending and straightening her leg. So it was just the machines playing up when she would move. Cheeky little girl she is. Nearly giving her mummy a heart attack.

My First cuddle

26/10/07 I got my first cuddle with Skyla today. I really needed that. Ive been really down lately. All the stress and worrying and my milk is still not really there. I held her for 3hrs. It was the best 3 hours ever. even though it was on a pillow, it was great. She went straight to sleep. It was the calmest i have seen her. Joe changed his first shitty nappy today. Ha ha, he cant say he cant do them now.

No More Nitric

25/10/07 YAYYYYYYY. One machine down. No more nitric. Skyla was totally off the nitric machine today. Although she is now off it they will still give her a similar drug called Sidenefil which she will take orally. She had a little vomit today. The drs put it down to them havfin a little poke at her belly.

Party Day at the Hospital

24/10/07 Last night i had slept at home for the first time. Not that i had slept much. I rang the nurse once or twice through the night. Sian said she was fine which was good. We arrived at the hospital to find Skyla with her pirate patch on as the icu theme was pirates. She looked so cute. Blake got to have the day off school and dressed up too. He had an awsome day. The police came and gave him a hat and tattoos, the navy also gave him a hat. He got to pick out the best dressed pirate out of all the nurses in icu. He chose Kat as the winner. Kat looked so cute. For doing that they gave him a thankyou gift. Jenga game and a chess game. Spoilt ay. Skyla had another good day. They weaned her nitric down to 0.9. They put her milk back down to 1ml p/hr as the surgeon didnt think she was ready for more milk. Had the hiccups today. Asleep for most of the day.

Tuesday, October 23, 2007

SKYLA day 6 to day 10

19/10/07 Skylas hernia operation was cancelled to due to an emergency of another little bub. They say it will probably be over the weekend or monday at latest. She had her drain from her operation the other day removed today. She needed some muscle relaxant to do that as they needed to stitch up the hole. They also put a central line near the top of her chest which will make it easier for the drs to give her what drugs she needs during her operation. Had her daily xray. Drs say her left lung still looks pretty good. Daddy got to clean her eyes and put drops in, i got the nappy change. (surprise surprise). No more sunbaking for my little princess. They took the lights off her today.

20/10/07 We come down early to see Skyla this morning. They had to up her morphine as she was very restless over night. Other than that she had a pretty good night. OPERATION TOMORROW @ 12PM unless an emergency turns up. I got to clean her eyes today and put lip moisturiser on her beautiful little lips. weaned her oxygen down again. Slowly getting there.

21/10/07 OPERATION DAY. I had the worst sleep that night, i am so scared for my little girl. I couldnt stop crying all morning. My little princess went off at about 12:45 for her operation. The drs said it would take about 2-3 hours but the actual op would take about 45min to 1 hour. Most of the time is spent setting up and getting her organised. We waited in the waitng room. It felt like it took forever. Finally the dr came in to tell us everything went well. They did have to put a patch in as the hole was a very big one. She had stomach, small and large intestines, spleen and liver all up where her left lung would be. I was surprised by how everything was there but the fact that she has so much left lung is amazing. My little girl had done so well. Im so proud of her. The drs did say to expect some downers as they normally can get pretty sick after this kind of operation.

22/10/07 Skyla did really well after her operation. They even weaned her oxygen down again. My little girl is amazing. She is my fighting princess. Her blood gases were good again. She was wide awake today, kicking her legs and throwing her arms. She doesnt like to be touched much, she gets really angry and all her machines start beeping but then she settles and everything is fine.

23/10/07 This morning when i saw Skyla her nurse said that they had weaned her nitric down from 6ppm to 3ppm. Hopefully tomorrow she will be off that machine and taking a similar med orally. Skyla started taking my breast milk today through the nasal tube. 1ml per hour. After 8 hours she had tolerated it really well so they upped it to 2mls. As long as she tolerates it they will keep upping it. They weighed her today, 1750gm. so she has put on about 40gm. Atleast she didnt loose any. Not like there is much to loose anyways. She is tiny. They also weaned her oxygen down from 30 to 28 and her breaths per minute from 50 to 40. The drs are very happy with her.

Thursday, October 18, 2007

Baby SKYLA 13/10/07

Eyes wide open for her mummy

Just after heart surgery

Skyla's Here

Well our beautiful little girl made her entrance into the world via emergency c-section on 13/10/07 at 308am weighing 1.7kg, 46cm long and 6wks premmy. The reason i had to have emergency c-section was because i hadnt felt her move for nearly 24hrs. She was immediately intubated and put on a ventilator. Daddy says she had her eyes wide open, legs kicking and trying to fight off the Drs. Thats our little girl alright. She is our little fighter. I didnt get to see my beautiful lil girl until about 2 30pm as i was recovering from my c-section.

14/10/07 Today she had
chest xrays we were told that not only did she have the diaphragmatic hernia and the vsd, which we already new about but Skyla also has a coarctation of the aorta which requires surgery on her heart prior to the hernia operation. although that meant bad news for her, the good news is that Skyla has alot more of her left lung than the Drs antisipated which is fantastic. She has been doing really well. Skyla has been stable, even trying to breath on her own. Going by her chest xrays, it just appears to be intestines and a little bit of stomach up in her chest. We are then told our little girl will have her heart surgery on 16/10/07 at only 3 days.

16/10/07 I come down early to see Skyla before she heads off for surgery. I got to clean her eyes and change her gorgous little bottom for the first time. It is so so hard not being able to hold our precious little princess.. She is so beautiful. Dad (Joe) just makes it in time to see her before she heads off for her first battle. I was a mess, its so hard to see such a little baby on her way for heart surgery. It was the longest couple of hours of my life. At 11 30 we get the call that she is on her way back to CICU and that everything went great. Skyla is stable, they even weaned her oxygen down. She come back with a chest tube in to drain the fluid. She even got strawberry shortcake band aids over where the incision was made.

17/10/07 I come down early in the morning at about 6 20am to find Skyla open her eyes for her mummy for the first time. They were so beautiful, i couldnt help my self but to burst into tears. Happy tears of course. Sian her nurse said that she had down well over night. She did need a little blood transfusion but she said that that is normal after heart surgery, other than that she was doing really well. Later on that night they noticed she was looking a little jaundise so she was placed under the lights. Later on that night we had a visit from Alex Baby George's mum. George is still up in the ward but doing well. It was great to finally meet her as i had been following there journey with CDH. I was discharged from hospital yesterday but as i dont want to leave her they have given me a room two levels above my little girl which is great. Only a short walk from her.

18/10/07 Today i come down early again to see my little girl under the lights with her sunnies on. (working on her tan already) As tomorrow will be her hernia repair operation they will take out her central line which has been stitched into her belly button will be removed. Later on this afternoon some time they will give her some muscle relaxant so they can put in another central line just near her neck i think so it will be ready for tomorrow. Please pray for my little girl for her next big operation. I will try to keep you all updated as much as i can as i am staying at the hospital. I ducked home today to grab some things and thought i better update it as some people dont even know i have had my beautiful little girl. I will add some photos soon too. Thanks for all your thoughts and prayers. Our little girl is doing really well.

Kristy and Joe

Sunday, October 7, 2007

Baby Shower 6th October 2007

Well yesterday was my baby shower that my mum and sister put on for me. Although i didnt get much sleep the night before (i was woken up at 330am and couldnt get back to sleep) i had a fantastic yet exhausting day. I had all my wonderful family and friends around me. We played some funny games. The dirty diaper game was the best i reckon. I couldnt stop laughing. The nappies looked gross and so real. There was so much food that mum had cooked, although there was so much left over, but at least Joe was on hand to polish most of it off. Skyla got so spoilt. She got so much stuff. She got heaps of beautiful clothes, her first pair of Nikes (so cute), towels, blankets, teddies, blankets ect. Have a look at her photos. Thankyou so much to our family and friends for joining us for my special day and for all the wonderful presents we received. They were great. Thankyou.

Tuesday, October 2, 2007


Had our fortnightly checkup today. Skyla now roughly weighs in at about 1534gms. I was hoping she had put on more than that but at least she has put weight on. Judging by the way Skyla has been kicking me lately, she is certainly getting stronger by the day. Its like she doesn't sleep. She kicks and moves all day long. I love it though, its the best feeling.
We also had our intensive care tour of the children's hospital today. As usual, i got upset. The reality of it all is getting too close. Its scary not knowing how its all gonna turn out. I didn't get to meet baby George today, but the fantastic news is that George is now out of intensive care and has moved to the ward. The little guy is getting better by the day. Yayyyyyyy..... Hopefully ill still get the chance to meet him and his family. It would be good having someone to talk too thats been through what i have to go through. Back to my ultasound, Skyla still has stomach and bowel up, liver down. Amniotic fluid index has come down again. So at least our baby girl isn't having trouble swallowing which is great. At my next visit i think we will make a plan as to when we will have our baby if she doesnt come by a certain date. I think it will be about wk 38 or 39. Its getting close now and im really starting to get scared. I hope its gonna be ok. Well better go now. Thanks everyone for your thoughts. We will keep you updated on Skyla's condition.

Wednesday, September 19, 2007

3D pictures

Our beautiful little baby girl SKYLA
My fists are up mummy and daddy. Im ready to fight this .
Her stomach and heart.

31wk checkup

We went back to hospital yesterday 18th sept. Our baby girl SKYLA is coming along ok. Still her stomach and bowel up in chest but we already new that. Her amniotic fluid index has come down to 23cm which is a good sign (was 25cm). Skyla's estimated weight is now 1321gms. So she is slowly putting on the weight which is great.

We will be booked in for our tour with the childrens hospital NICU at our next visit on the 2nd Oct. I cant wait to meet the beautiful baby George who is the other CDH baby at the same hospital. I got some 3D pictures of Skyla which i will upload shortly and i also have a photo of her hernia. It shows the stomach next to her heart.

Kristy, Joe n Blake

Friday, September 14, 2007

last few weeks

The ultrasounds have noted that the stomach and intestines are sitting up in the chest cavity where her left lung should sit. By doing this her heart has been pushed right over to the right side of her chest cavity and has caused her left lung with little room to grow.

The longer Skyla stays inside of me the better it will be for her as it gives more time for her lungs to grow and to function. Thats what it comes down to really, how big her lungs are and how well they function.

Growth wise, Skyla is growing ok for a baby with CDH. At my 28wk scan she was measuring about 1080gms.

My next visit is on the 18th September. Until then, take care everyone. Please keep us in your thoughts.

19wk scan

>>>>>> our baby girl at 19wk scan

Thursday, September 13, 2007

CDH Baby

Hi there, i am currently 30wks pregnant with a baby girl. Her due date is 21st November 2007. We have decided to call her SKYLA. She was diagnosed at our 19wks scan with a Congenital Diaphragmatic Hernia (CDH) and a small Ventricular Septal Defect (VSD). The Drs have given her a 60% chance of survival. We decided to continue on with the pregnancy with the hope that our little girl would fight this with all she can and pull through.