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

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.