Give us a break

ARGH!!! Things have gone downhill since my last post. Unfortunately Raffy caught a cold whilst in PICU. She was such a miserable little pumpkin and it was so hard to just watch her crying and grizzling in the cot. She was vomiting and had a temp as well. So now her recovery has been delayed because of this as they have had to put the CPAP back up to 10. The doctors and surgeons are still unsure whether it is her floppy airways or her narrow aorta which is giving her trouble breathing. I believe the plan is to let her rest on full CPAP for a day or so then to start weaning it again and hopefully we will some indication of which one it is.

The good news is that she is fully off any sedatives although the night staff give her some during the night if she is wakes up. I am not too happy about this and have spoken to our social worker and liason officer about it. The fact of the matter is that she is a 6 week old baby. She doesn't want to sleep all the time and she has her alert periods where she wants to be stimulated just like any other baby. I don't think it is fair to keep her drugged up so she will sleep. How many six week old babies will sleep from 7pm till 7am?? None that I know of anyway.

I got the fright of my life this morning when I went in. We are in room 3 and Raffy's bed is right in front of the doorway so I can see it as I walk down the corridor. Well this morning her bed wasn't there. I stopped at the central desk and asked where my baby is?? Nobody knew where she was. Luckily we found her still in room 3. She had been moved to another position in the room but no one had changed the paperwork.

Today is day 37 of our PICU stay so far. The time really is flying by to be honest. This whole expressing caper is getting on nerves and I can easily see why so many mothers turn to formula. I will keep it up though so I can start trying to breastfeed when we get up on the ward. They are fortifying my EBM with formula to give Raffy extra calories so we can fatten her up a bit. I actually thought it would be some special formula specifically made for this but in reality, it is just Nan HA Gold.

Anyway, I had better go and finish the washing and then wander back over to the hospital. I hope everyone out there is happy, healthy and doing well.

Peace out xx

Best week yet

We have had the best week. I am so proud of Raphaela and her fighting spirit and how far she has come in her short little life.

She is now down to three drugs. Dobutamine, which is helping her heart muscle, Fentalyn, which is a sedative and Heparin, which is helping resolve the clot in her leg. Once the clot is gone, the heparin will be taken off. As for the other two, well they are slowly being weaned although the doses are pretty small as it is. She is also given aspirin down her NG tube which helps keep the blood thin so there won't be any clots in her shunt.

As for the CPAP, this too is being weaned. If she can't come off it, it means that her aorta is still a bit narrow and she will have to have another surgery before her BCPS operation. If she does come off it, well I for one will be jumping for joy as it means we can move up to 7West.

And now for the super SUPER news.. I GOT CUDDLES!!!!!!!!! Can you tell I am excited?? LOL Raffy also gets to wear clothes now and has graduated to a regular cot as she doesn't need the heatlamp above to keep her warm anymore. She is up to 34mls of EBM every two hours as well. And her voice is slowly coming back which is fantastic. And did I mention that I got cuddles?? :)

I also got to spend two nights at home with Fred and the kids. One of the nurses here lives down in Rosebud so I can grab a lift with her when I want which is great. It was really good to spend some time with them as I have really only managed to make flying visits so far. I did fret a bit about being away from the hospital and Raffy though and called a few times to make sure she was alright. Tadhg had his first parent/teacher interview and is doing spendidly at school which was music to my ears and made me feel that we made the right decision by sending him this year. As for Clementine, she is just as cute as ever although she could lose some of the 2 year old attitude she has acquired.

S&P news: There was an Orbit in the parents lounge of the PICU today. I have never seen one IRL before so I stopped and had a good look at it. I think the owners thought I was a bit weird though. Can't say I really liked the look of it to be honest and I was a bit embarassed to ask if I could take it for a push to see how it went.. LOL

Thank you to everyone for all your support and well wishes. Fingers crossed that the next time I post, I will have some more fantastic news for you all.

The girl is grumpy

We have been having a good couple of days. Raphaela was extubated yesterday and put on CPAP. When I was told they would be using nasal prongs, I immediately thought of the thin type you see on tv shows and the like. I was obviously wrong as you can see from the pic. They are a monsterous pair and dwarf her face. Apparently these are the type they use on premmies in the NICU and they had to use them on Raffy because her delicate little nose is too small for the regular ones. As you can tell in the pic, she doesn't like them and is grumpy about it (although I personally think she is unhappy that they are making her wear such an ugly blue hat :p). The sad thing is that now the tube is out of her mouth, she can now cry but no sound comes out at all. Sounds like every mothers dream doesn't it?? LOL

One thing about ICU is that no matter how bad I think my situation is, all I have to do is just look around and I can see other families in bigger predicaments. We have four babies/children in our room at any given time and my heart went out to the parents of one of the baby girls last week. Their daughter was only 5 days old and they had to make the heart wrenching decision to turn off her machines and let her fly free. It made me realise how lucky I am to still have Raffy alive and doing well.

And a BIG thank you to Bron, Vanissa and Deb for the very welcomed care package that arrived today. It was such a lovely surprise and certainly brightened my day :)

Well I am off to get a massage :) (one of the perks of living at Ronald McDonald house as they provide lots of stress relieving things like this for free).

So much going on

WOW.. we have been on such a rollercoaster the last few days. Raffy was doing so well on Tuesday so I decided to go home and see Fred and the kids that afternoon and stay the night there. I got back to the hospital late Wednesday afternoon hoping that Raphaela had been taken off the ventilator and put on CPAP but it wasn't to be. All the pressures and the rate were down to the minimum so it was looking good. The noradrenaline had been stopped and the midazolam and fentynal (sedatives) were also being weaned. The play therapist had also been in my absence and left me black & white flashcards, books and a portable DVD player to play classical music to Raffy. We were also the lucky recipients of a gorgeous quilt made by the Victorian Quilters. This is a group of ladies who makes quilts and deliver them to the children throughout the hospital. I really want to get involved with this once we are out of hospital.

Then I got a call at 7am Thursday morning from our nurse saying that Raffy had pulled her ventilator tube out at 3am that morning and had struggled with breathing on her own. She WAS breathing but apparently it was quite laboured so they quickly put the tube back in. The decision was made to send her for a bronchogram which is where they put dye down into her lungs to coat the airways and take an x-ray to see how her airways are. The bad news is that she has bronchomalacia which is a fancy way of saying that she has a floppy airway. The good news is that it is a mild case and only the left side is affected. Hopefully slower weaning will help strengthen this up. As Raffy needed to be awake for the bronchogram, the doctors decided to stop one of her sedatives and cut the other down to minimum. This was effectively making her go cold turkey (like a drug addict) and she had a very unsettled night as she was having withdrawal symptoms. After trying to get her to sleep with Valium with no effect, they eventually started her sedatives back up this morning so she pretty much slept all day today.

Her PD cathetar was meant to come out today but as her tummy is still a bit distended, they decided to do an ultrasound first to make sure it wasn't clogged and not draining properly. I think we were forgotten about cause it is now 10pm and they still haven't been to do the ultrasound. Hopefully they will be around first thing in the morning so we can find out what is going on.

The cardiac surgeons have their big indepth meetings on Monday mornings so I am hoping that they will decide on the next course of action for Raffy as there was still some concern that her breathing issue is connected to her heart and the patch they put on her aorta.

At the moment I feel like we turn one corner and are then met with another brick wall. I can honestly say that this is the most emotionally, physically and mentally draining thing that has happened in my life so far. Raffy turns 1 month old tomorrow and has had to endure more in that short time than most people do in a whole lifetime.

Up and down

Raphaela has been going up and down the last few days. Her chest and PD drains were taken out on Saturday and she was doing extremely well. The sedation and the ventilator were both being reduced and the adrenaline and noradrenaline had both been turned off completely. They were even talking of taking her off the ventilator and putting her on CPAP the following day.

Unfortunately she took a turn for the worse on Saturday night. Her tummy swelled up again which made them put her back on the noradrenaline and turn up the ventilator as her blood pressure was going crazy. Her feeds were also stopped. I was so disappointed when I went in Sunday morning to find this out as I feel we are going nowhere at the moment. The PD drain was re-inserted not long after I got there. Luckily they managed to put it back in the same hole it came out of so at least that is one less scar for her. Raffy remained stable for the rest of the day which is good.

This morning was a new day and the weaning process has started all over again. So once again the sedation, ventilator and noradrenaline have all been getting reduced throughout the day. She is tolerating this very well. The PD drain is still in and will stay in for a few more days so we don't get the same problem again. I even managed to convince the doctor to let her start on feeds. Once again she is starting at 2mls per hour but I am just happy that she is getting anything at all.

Fingers crossed she has a brilliant night tonight and that each new day brings us closer to moving up to the ward.

Her eyes are open

Well after a stable couple of days, I can say that Raffy is finally showing some improvement. Her BP and oxygen sats have been great so they have started weaning her off some of the drugs. The muscle relaxants were stopped yesterday so she has been slowly waking up and even opens her gorgeous eyes for me (as you can see in the pic). The clot in her leg is also getting smaller which I was pleased to hear and there has been no sign of infection in her blood cultures for the last 4 days although they are keeping her on antibiotics for the time being just to be on the safe side. They have also been scanning her brain daily to make sure there is no brain damage and everything is perfect in that respect. And she has started back on EBM this morning. Once again, it is only 2ml per hour but we will slowly be building this up.

On the down side of things, an ultrasound yesterday showed that she has an enlarged liver. Apparently the Prostin she was on to keep her alive before surgery kept an extra duct open. Sometimes this happens and sometimes it doesn't is what I have been told. Anyway, because the extra duct has been kept open, extra blood is being collected into the liver making it enlarged. This is not life threatening and the doctors are not concerned about it at the moment but it may be something that needs to be addressed in the future. Overall, things are certainly looking up so I have a renewed sense of hope. I can't wait for her chest drains to be removed though. Hopefully this will be in the next couple of days seeing as they are only draining 1ml every 4 hours or so.

And one for the pram lovers :) The nurse we had today is 19 weeks pregnant and is not finding out the sex of the baby. So we got talking about what she had already bought and what she was going to buy. So far, they have been given a cot, changetable, car seat and bouncer secondhand from her SIL but she said she insisted on buying a new pram. I asked what sort (of course.. hehe) thinking she would say a beema or steelcraft or something so I nearly fell off my seat when she said a Cammy!!! They were tossing up between that and an MBU so I was pretty impressed and we spent the next hour talking about the pro's and con's of lots of different prams (they had certainly done their research so she knew a fair bit). It whiled away the time and made for a pleasant afternoon :)

Another day is over

Raphaela had a rough night last night. For some reason, maybe because her oxygen sats and blood pressure were good, they decided to stop the muscle relaxants so she was fluctuating all night. They started the muscle relaxants again this morning so she has had a relatively stable day. She had an echo done this morning which is showing that her heart function isn't the best, but it isn't the worst either. There is also some leakage from around the patch they put on her aorta which isn't good. The doctors will be keeping an eye on this as they may need to open her chest again to repair it. It feels like we take one step forward and then two steps back which is so frustrating but as Roberto (doctor) said to me today, "she is doing everything right but she is doing it in her own time and on her own terms."

They have stopped her feeds for the time being as since her chest was closed, her tummy didn't seem to be tolerating them too well so her dietician (yes she has her own dietician.. LOL) came down to see how they could up her calorie/fat intake. She is back on her drip of Lipid which is basically fat (as far as I understand) but I am hoping they will start her feeds again soon. I am having nightmares about the ladies from the formula room calling me to tell me that I am taking up too much room in the freezer with all my bottles of EBM.. hehe

Her chest is closed

I have been very slack over the last few days and haven't been writing purely because we have just been waiting till today to have Raphaela's chest closed. It didn't happen as planned on Friday as she was still carrying too much fluid around her little tum tum. This would have caused too much pressure on her heart and lungs if they had of closed it so the decision was made to wait till Monday.

So once again, Yves came into the ICU and operated on our little girl. He washed out her chest cavity, changed her central line to her groin and finally closed her chest up. Raffy is looking a bit pale now but her oxygen sats have improved a great deal even though they reduced her drugs. Her blood pressure could be a bit better but the next 48 hours is critical for her and she is going to be sedated and muscle relaxed so hopefully it will start improving after that time.

Her next hurdle is to reduce her drugs even more then start the weaning off the ventilator. One day I might actually be able to give her a cuddle again!!!!

I got to take a quick trip home last night to catch up with Fred and the kids. Gosh it was good and the staff here even commented on how much better I looked after a good nights sleep. (They only have single beds in Ronald McDonald House for some reason so I haven't been sleeping the best whilst I am staying here). But the biggest surprise was waking up this morning to a cup of tea and poached egg on toast for breakfast. Thanks Fred ;)

We are currently on Day 13 of our PICU stay and I am hanging out to be moved up to the ward. I feel useless at the moment as I am not confident enough to even change Raffy's nappy because of all the drainage tubes coming out of everywhere. All I can do is sit there and pat her head or the top of her arm as they are the only bit free at the moment.

Slowly we go

Today has been a good day. Raffy's chest did not get closed but it is on the cards for tomorrow which is what I pretty much expected as she is still carrying a bit too much fluid. She is travelling along slowly but surely. Everything is going right for the moment (touch wood!!!)

When we first entered ICU after Raphaela's first operation, I wondered how the nurses and doctors can carry on and laugh and joke amongst themselves when they are surrounded by such sick children. Now that we have been there for 9 days, I can't imagine it any other way and join in with the laughter and jokes (I am feeling like part of the furniture these days).

I am also looking back on the time when we were first told there was a problem with her heart and I remember thinking 'Please let it just be a hole in the heart' as they are just so easy to fix these days. Now I see parents whose babies have a hole in their heart and for most of them, their whole world is crumbling because of this news when all I can think 'Gosh I wish it was that easy for us'. I feel really selfish when I do think this but when I think of what we have already been through and what we still have to go through, the green eyed monster rears its ugly head in my mind.

Raphaela is two weeks old and her medical history is already 2 inches thick which equals 1 inch for each week of her life. Pretty impressive for a newborn don't you think?? hehe

And for those of you who have never seen me before (as I am camera shy!!), that is me in the picture with massive bags under my eyes and all :P

More bumps in the road

Well after being on such a high yesterday, I was bought back down to earth at lunch time today. Because Raffy had been on ECMO for 6.5 days, she has an infection in her blood caused by the blood going through all the plastic tubing for so long. This can be treated with antibiotics but it will delay her recovery.

On top of that, last night they were having trouble with her central line so the doctor in charge tried to insert a new one in her leg. Apparently they couldn't get it in and now she has a clot in her leg so they have upped her dose of Heparin to try and dissolve it.

The doctors are also worried about her being on morphine for so long and the associated withdrawal symptoms so they are going to be putting her on a new drug (can't remember the name of it) which will also allow them to hopefully stop the muscle relaxants as well.

For some reason her blood pressure will drop every so often which causes her oxygen sats to drop which in turn means they increase her dose of Noradrenalin for a short time. We are all hoping this irons itself out sooner rather than later.

Tomorrow is the day they decide if they will be closing her chest or not. I have my fingers crossed that they will but I won't be too disappointed if they don't as she is still obviously having some issues.

On a lighter note, to any S&P'ers reading this, the pram spotting at the hospital is very dismal. I have seen a few Cammy's, a few MB's, some Baby Joggers and a Dazzle. There are lots and lots of Valco's, Steelcrafts, Beema's and cheap umbrella strollers though.

This girl is going to turn my hair grey!!!

31/05/10 - 01/06/10:

Monday morning rolled around and I was over at the hospital bright and early. Today was the day they were going to try and take Raphaela off ECMO again. They were also going to be checking the shunt.

This time they would be doing the surgery right in the ICU room. One o'clock came around and the team assembled to start so I was ushered out the room. I got a call at 3.45pm to say that they had been unsuccessful in removing her off the machine. Yves did have to change the shunt though. The original one was 3.5mm and her new one is 3mm. He also changed the position of it so now it is in the centre of her heart instead of the right hand side.

After the call, I was starting to feel really defeated. I knew that if Raffy doesn't get off this machine, she has no hope of survival. The doctors were baffled as her heart was functioning perfectly so they had no idea why she wouldn't come off it. Feeling a bit lost and down in the dumps, I ended up going home to Rosebud for the night so I could see Fred and the kids and bolster my spirits a bit.

Tuesday morning I got a call from Clancy our nurse saying that they are going to try again to get her off. I was told they would be finished about 12pm-ish so was going to time my arrival back at the hospital to coincide with this. Next thing I know, Igor rang me at 10am to tell me that she had come off the machine without a problem. My heart just soared and I was grinning from ear to ear. The next few hours would be critical though. I quickly got everything together and set off in the car for the hospital. I arrived just after 12pm and raced to PICU to see her. She looked absolutely marvellous and there is so much room around her cot now that dreaded machine has gone. Raphaela remained stable for the rest of the day. Her blood pressure dropped slightly which in turn made her oxygen sats go down also but it soon rectified itself. I am so proud of my gorgeous girl and now that we are over this little hump, I pray that the rest of her recovery is alot easier.

If all goes according to plan, her chest will be closed in 48 hours and then the ventilator will start to be weaned. I am looking forward to the day where we can move out of the PICU and back up to ward 7 West.