Waiting again

30/05/10:

Since the initial surgery, Raphaela has also had another one done to unclip the shunt they inserted and have an internal echo. She has pulled up quite well and currently they are just letting her rest herself up for the big challenge tomorrow of weaning her off the ECMO. She is behaving herself and her body is showing signs of improvement although they are now worried that the shunt is too big as too much oxygen is going to her lungs and not enough to her body. We will find out tomorrow whether they are right or not.

Raffy has lost most of the puffy look she came out with from the first surgery and is looking more like herself every day. I can now look beyond all the tubes and machinery and see my gorgeous girl again. She now squeezes my finger when I place it in her hand and sometimes she will even open her eyes for me and we will have a gazing contest with each other. I do find it a bit freaky that she can open her eyes and look at me when there is a big gaping hole in her chest and I can see her heart pumping. She started on 1ml of EBM an hour and is currently upto 4mls per hour. I can't wait till she is a bit better and can try breastfeeding as I am not liking all this expressing although I must say it is quite easy with an electric pump.

The nurses here are so fantastic and take all the time in the world to explain everything to me. They are so compassionate and are taking the best care of my baby girl.

Surgery Day

25/05/10

Well today is the BIG day of Raphaela's surgery. They took her off at 8am and it felt like my heart was being ripped out. I got out of the hospital and just cried as I didn't know when I was going to see my baby again. Our surgeon was Igor and he had told me approx 6 hours for the surgery and that he would call as soon as he had finished.

I took the VLine down to my sisters house to pick up their spare car so I had transport whilst at the hospital. Then I drove to our house to see the kids and Fred before I had to go back to the hospital. We still hadn't had a call by 4pm and I was starting to think the worse. We ended up calling the hospital numerous times but all they could tell us was that she was still in theatre. By 6pm, I was crying constantly although I was trying so hard not to for the kids sake. We still hadn't had a call by 7pm so I made the decision to drive back to the hospital so I was close by. It was an hour and a half drive and I have no idea how I made it in one piece as I was just a mess. I was nearly there when the phone finally rang just after 8pm and it was one of the doctors telling me to go the theatre reception so he could talk to me. I seriously thought he was going to tell me that my baby girl had died so when he told me she was still alive but the operation was a lot more complicated than first anticipated, I just broke down then and there. He told me that they still had a couple of hours work to do but I would be able to see her in ICU after that.

Finally at 11.30pm I was allowed to see Raphaela. She had come out of the operation on ECMO which I so didn't want her to do but at least she was still alive. I stood by her bedside crying and touching what little part I could for quite a while. I knew she was stable and in safe hands for the night so I finally went back to the house at about 12.30am and fell into a troubled sleep.

Waiting for surgery

21/05/10 - 24/05/10:

The next few days pass relatively peacefully. We are waiting for confirmation of Raphaela's sugery. The whisper is that it is scheduled for Tuesday 25th but these things can always change so I wasn't pinning my hopes on anything. Fred had to return home to look after Tadhg and Clementine so I was at the hospital by myself from now on. We opted not to bring the kids to stay at Ronald McDonald house as we have been trying to keep their lives as normal as possible and this includes Tadhg going to school.

Raphaella is going great. Dr Christian Brizard came around on the ward rounds and asked why she wasn't feeding yet which was a surprise to me as the other doctor had said she can't have any food. In the end, Christian made the decision to start her on EBM and by the time she went off to surgery, she was actually on 9mls per hour. She was very good at sucking on the bottle but it was making her heart work too hard so they put an NG tube in for her feeds and she did alot of sucking of the dummy in the meantime. As we were waiting a few days for the surgery, I got so many cuddles and kisses in whilst I could. I really enjoyed this time as I knew it would all be changing very soon.

Transfer to the RCH

20/05/10:

It is day 2 of our family's journey of having a heart baby. This morning she was taken to the Royal Children's Hospital by NETS. She looked so tiny in such a big capsule and it broke my heart to have to say goodbye so soon. I was stuck staying at Monash Medical Centre until they decided I was ready to go. Luckily that happened in the afternoon and we soon got to join Raphaela at RCH. On our way there, our social worker from RCH rang and said they have a room at the Ronald McDonald House for us. This was fabulous news as it is just across the road from the hospital so to be so close was absolutely brilliant. We went and visited Raphaela and got many cuddles in although it was a bit scary with her two IV's. I was worried one of us would knock one out. At this point, she was still on a starvation diet as the doctor didn't want her having any EBM whilst she was on the Prostin.

The start of the journey

19/05/10:

Today was the day we welcomed our much wanted little girl into the world. Raphaela Georgette was born at 2.22pm weighing in at 3.258kg. She was 53cms long and had a head circumference of 35cms.

I got a quick cuddle before the waiting team of doctors whisked her off to ICU to start her on a drip of Prostin. This drug is what was keeping her alive until her first open heart operation which is part of the Norwood Procedure. Our gorgeous girl was born with major heart abnormalities which are double outlet right ventricle, hypoplastic left heart syndrome, hypoplastic aorta arch and multiple ventricular septal defects. She will have to undergo a series of 3 operations if she has a chance of survival.