The last day

After a very restless Friday night, I went over to the hospital at about 6am to sit with Raffy. Fred arrived just after 8am after organising Tadhg and Clementine at Nanny and Poppy's house.

The procedure was scheduled for 9am but we were given a couple of extra hours to smother Raffy with kisses and whisper positive words in her ear.

I was a nervous wreck and just had to try and occupy myself till the call came. Fred went over to Ronald McDonald House to do some washing. Derek (our nurse) rang me and let me know the Raffy was off ecmo and still alive. Her blood pressure seemed steady but she was in an extremely critical condition. I immediately rang Fred and he raced over to the hospital. I was just shaking like a leaf by this stage. We went in and saw her and it was just a glorious sight to see her without the awful ecmo machine next to her. We each took one side of the bed and just sat holding her hand and stroking her forehead. We stayed like this for quite a while.

Eventually her blood pressure started to drop slowly. When it got to 29, I called the doctor over to let her know and they put screens around the bed. I knew this was Raffy's final farwell and let Fred know as well. When her blood pressure reached about 20, the nurses started unhooking all the lines and tubes as quick as they could. They wrapped her in the quilt I had made for her and placed her in my arms as soon she would be gone. Fred ran out the room in tears. Strangely, I was quite calm which surprised me. So there I sat with Raphaela in my arms slowly dying. I told her what a brave gorgeous girl she was and that she was going to meet my mum now who would take care of her. I told her how much we all loved her and would miss her. I told her of all the other angels she would meet and have fun playing with. And then I told her that one day we will meet again and that I can't wait for that day but for now, she has to go on ahead of me.

Derek came over and listened to her chest and confirmed that her heart had stopped beating. He then disconnected the ventilator. I sat for a while longer still talking and kissing Raphaela. Fred came back into the room and he sat down and had a cuddle and kiss too. We eventually left her so they could remove all the lines, tubes, tape and close her chest up.

When we went back over to the hospital, she looked like a perfect sleeping baby. We gave her her first ever bath. We dressed her in a cute little outfit. We did hand and foot prints. We took lots of photos. And then with heavy hearts, we had to leave our beautiful princess behind.

Fly free gorgeous one

I will be back to write a full account of what happened yesterday but for now I just wanted to thank everyone for their support and well wishes.

Fly free our beautiful angel Raphaela. I know you will be safe and well looked after by my mum up above. All our love forever Daddy, Mummy, Tadhg and Clementine xoxo

Devastated

I am sitting here typing this in tears and just feel absolutely numb. Getting Raffy off ecmo didn't happen today unfortunately. They are going to try again at 9am tomorrow and regardless of how she does, they will not be putting her back on it so unless an absolute miracle occurs, our gorgeous girl will be going to heaven to play with the angels.

Our biggest challenge yet

Tomorrow is the day that they are going to try and get Raphaela off the ecmo machine. Tomorrow is the day she needs to show us how brave and strong she is and fight for her life. Tomorrow is the day that I will be crying. Whether they are tears of joy or tears of sadness and devastation I do not know.

If Raffy doesn't come off ecmo, they will leave her on it and try again in the following 24 - 48 hours. If she manages to come off, the following hours will be extremely critical. If she has another cardiac arrest before her second operation is due, they will be letting her go and we will have to say goodbye to our gorgeous girl.

Enough said!!!!!!!!!!

Out of surgery

I finally got the call from Igor late this afternoon at about 5.30pm. The surgery was finally over. He sounded very positive on the phone and managed to get everything done and was pleased with the results. I did have to wait another 1.5 hours before I could go and see Raffy as the anaesthetist had to finish up and then they had to get her settled back in the room.

She is looking fantastic considering what she went through today and is still surprising all of us with her resilience. Her whole body is being fully supported at the moment and she is also still being cooled to minimise any swelling in her brain. Fingers crossed she has a great night tonight.

As we have been in ICU so long now, I have formed some quite close friendships with various staff members. One of those is Lindsay. She is such a lovely lady, always bubbling over with laughter and happiness and will always liven up my day or cheer me up when we are having bad days. Lindsay had been sick last week so hadn't seen Raphaela and didn't know what had happened so it was a shock for her to arrive at work to find Raffy back on ecmo and in surgery. She even went into the theatre to check on her. Anyway, today she had bought Raffy a present in to work with her. It is the Alice in Wonderland book with a special message she had written in it just for Raphaela. Such a simple thing but it really touched my heart and I can't wait to read it to her tomorrow.

When we were in room 4, there was a 5yo boy called Ali in the bed next to us. He was born with a healthy heart but a few months ago he got an infection in his heart. He was flown down from Sydney to await a heart transplant. He slowly deteriorated and was put on ecmo to wait for a heart to become available. Unfortunately a heart never came and sadly Ali passed away a few days ago. Once again I am so thankful that we still have Raphaela with us and am praying that she can pull through this latest crisis.

This whole experience has really opened my eyes to what is important in life. I want all of you to give your kids extra cuddles, tell them you love them and please don't sweat the small stuff.

Another decision made

Today was just a whirlwind for me and my head is still spinning from it. My day was taken up with meetings with surgeons, doctors, the liason officer and our social worker.

The decision was made for Raffy to go back to surgery tomorrow try and fix her leaky valve, open up another part of her heart with another patch, change the ecmo canula's from her neck back to her chest and finally to try and repair the veins in her neck where they had to put the ecmo in the emergency. What a day my poor girl will have.

They did an ultrasound on her head this afternoon and there is no bleeding which is great and they couldn't see any damage done but she will still have to have a CT scan before they can say for definite. One thing I have found out is that from when she had her arrest to being put back on ecmo, her blood pressure remained quite stable which means that the blood was still circulating around her body which is a very good thing. Raffy is retaining alot of fluid so she is getting that puffy look again. She has been trying to open her eyes for me but it is hard for her to do at the moment.

Tomorrow is going to be a very long day for me. Raffy will be taken off at 8am for the surgery so I am going over at about 7am to spend some time with her beforehand. Hopefully she will be back at about 3pm but you never know what to expect really. I will update as soon as I can to let everyone know how it all went.

Off topic: They have a parents lounge in PICU. It is quite comfortable with lots of lounges, dining table and chairs, miniature kitchen and flat screen tv. Anyhow, it did have a DVD player in there as well but would you believe someone stole it!!!!! I mean seriously, how low is that and what a pathetic person he/she is. I couldn't believe it.

It couldn't get any worse

OMG.. I don't know where to start.

Thursday, Friday and Saturday were all great days full of cuddles and laughter. When I went over to the hospital on Saturday night at 6.45pm, our room was closed off so I asked the nurse at the desk when it will be open again. Raphaela's nurse came out and told me that she had taken a turn for the worse and needed to be re-intubated so would once again be on full ventilation. I waited in the parents lounge and once they had done that the nurse came and got me so I could go in and see her. An echo (utrasound) had been done in the meantime and her heart function was very poor. As she only has one ventricle to pump, it just wasn't coping with the job it had to perform. A few hours later, another echo was done and this one showed that her heart function was back to normal as it had been for the past few weeks. I thought the crisis was over so at about midnight, I returned to the house for bed.

Oh how wrong I was.

I got a call this morning from Raffy's nurse. I can't remember alot of what she was saying as she had woken me up but I do remember her saying 'Would you like to come over??' I didn't think it was that urgent because she asked me if I would like to come over instead of please come over straight away. Anyway, I threw some clothes on and raced over to the hospital. In the 3 mintues it took me to get over there, Raphaela had gotten even worse and had a cardiac arrest. I was immediately taken to a private room and sat down with Igor (surgeon) and two other people. Igor quickly told me the situation and asked me to make a decision. I had to decide whether to let Igor put her back on ecmo or to let her die. I was trying to comprehend what the hell was going on and then to be asked to make a decision like this. It is every parents worst nightmare. I had three pairs of eyes just looking at me waiting to hear my decision. I blurted out 'Lets get her back on ecmo' and Igor was literally running out the room to go and do it.

I rang Fred and explained what was going on. He organised himself and the kids as quick as he could to come up here, stopping to drop the kids off at their nanny and poppy's on the way. I think he was a bit shocked at it all too as he had only been here on Friday and had seen how great she was looking.

After things had settled down, the doctor took Fred and I into the meeting room for a chat. He sounded very pessimistic about the whole situation. That is one thing I have noticed here, one person will be very positive but the next will be negative. Anyhow, he explained to us what was going on and the fact that everyone is quite worried about Raffy now having severe brain damage. This is also a big worry to Fred and I also but we won't find anything out for a few days until she can have a cat scan.

And here is the ironic part of the story. This whole episode has been caused by an infection that Raffy has caught from being in hospital.