Today I had a phone call....

From a lady called Helen who is our Cardiac Liaison Nurse at GOSH.
She was lovely and explained a lot to me and gave me a lot of information over the phone. I had to note it all down so I would remember it all to tell Ian, so now I will just transcribe my note to here so then I won't forget bits when I speak to anyone about it as hopefully you'll read it hear :)

Helen is our Cardiac Liaison Nurse and she is there to support us through everything :) operations, interim, home checks and anything in between.

She explained to me that after the first operation there can be complications, but she will be teaching us what signs and symptoms to look for and monitor. She will also give us life support training before Emily can come home so that should she stop breathing or anything equally as horrible, we will be able to provide life support until an ambulance/help arrived.

Helen told me that when we bring Emily home, GOSH will lend us some equipment for home monitoring. Helen will train us how to use the machine and will be making provisions for home monitoring for us.

She reassured me that if I end up giving birth in Peterborough, when it was time for Emily to be transferred to GOSH, there would be a special team of doctors and nurses in the ambulance and organising the transfer. Helen did also ask me to prepare myself that should I give birth in Peterborough but then be unable (for medical reasons) to travel to GOSH with Emily that Ian could go with Emily and I would have to follow. Hoping this won't be the case but it is a good thing to be prepared and to know that this could happen.

If I am induced in London then this will happen at UCH, which is close to GOSH. If the induction path is decided on then we will get to go meet the team there and have a look around.

Helen told me about the family accommodation at GOSH. We know that for the worst part there will be accomodation for both Ian and I. Once Emily is recovering from the first surgery and when is on a normal ward (not intensive care or high dependency) then they can only guarantee accommodation for one of us, but we can deal with that when the time comes.

Oh, she told me that if I planned to breastfeed that there is a clinic there who will be able to support and help me with this. Most heart babies do struggle with feeding as it is hard work for them, but Helen has told me there will be help there for me if I need it and that they can support me with expressing milk for Emily for as long as I can and such. They will store the milk for me and give to Emily :) I really wanted to breastfeed, she needs as much goodness and help as she can :)

The last bit of news is a bit of a biggie. As Ian and I are not married, only I can give consent for Emily's operations and treatment. Helen advised us to talk to Dr Sullivan about this as, should there be a situation where I am not there/able to give consent, there may need to be something in place that means the responsibility is passed to Ian. Whether I will sign something, who knows.

We've also arranged that after our next fetal echo in March, we will meet up with Helen and she will show us around the ward and we can have a big chat then too.

It really was a massive information overload! I'm feeling a bit more positive but also a lot more scared..... I'm so pleased we have heard from Helen though and it feels more like things are happening and we haven't been forgotten :)

We've made a list of things we need to buy leading up to the birth, only the basics, so that we have them all ready. I'm really looking forward to finishing work at the end of this week and making pretty things for the nursery and finishing the decorating.

Things are okay :)

xxxx