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.

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.

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.

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.

EXTUBATED! EXTUBATED! EXTUBATED!

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.

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.

PLAN TO EXTUBATE TOMORROW

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.

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.

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.

CPAP PRESSURE SUPPORT

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.

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)

INFECTION

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

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.