Saturday 30 May 2015

Surgery Update

Last Wednesday we took Harper to Great Ormond Street for her pre admission tests. They all went well and we were told that Harper's heart wasn't as complex as they first thought and they should be able to repair it in this one operation.

We had a chance to meet with the surgeon who explained what they planned to do and told us to expect surgery to last around 5 hours. We were given fasting times and told to bring Harper back to the ward at 11am the following day.

We stayed at Joe's Nan's that night as she lives in London and would be easier to get back to GOSH the next day. We woke Harper at 6am to try to get her to have something to eat as she wouldn't be allowed anything after half 6. By 8am we were in a cab travelling across London. I held back tears as I cuddled her feeling sick at the thought that I'd be handing her over to surgeons in just a few hours.

We arrived at the hospital at 9am and had planned to sort out our accommodation before taking Harper down to the ward. As we walked up to reception my phone rang..'I'm sorry but we have had to cancel Harper's surgery today..we no longer have a bed for her on intensive care'.

My first reaction was to cry, we were there in the hospital..I had prepared myself as much as I could that today she was going to have surgery. Now I'd have to go through all this again. 

Once I had time to let it sink in I realised just how lucky we are. Harper's surgery had been cancelled because babies and children had been rushed to GOSH for live saving surgery, hers was cancelled because she isn't a priority right now. Harper is living with her condition, she is almost a year old and has lived with Heterotaxy without any surgery. Something that's extremely rare. For that we have to be grateful. 

Harpers surgery is now going to be on the 25th of June, although it's only a few weeks away I'm able to push it to the back of my mind for now. Harper will be turning 1 on the 21st and we are going to make sure we make it as special as we can for her.



Tuesday 5 May 2015

Open Heart Surgery

I haven't written a post in so long, partly because everything had been going so well there wasn't really much to write in update posts..but also because as her operation got closer I'm finding it more and more difficult to talk about it. 

We found out a couple of weeks ago that Harpers surgery will be the 21st of May, she will be exactly 11 months old. We will have to travel up to Great Ormond Street the day before for her pre assessment which we are told will last around 4 hours. We will get a chance to speak with the surgeon and have all our questions answered.

We don't know how long the operation is likely to take, how long her recovery time is expected to be or what exactly they are planning on doing with her heart. We have a rough idea as we know she needs to end up with two chambers at the top instead of her one large one but they've haven't yet explained how they will do it.

We have very kindly been given accommodation from the pre assessment day until Harper comes out of intensive care, when one of us can then stay on the ward with her. It means leaving Teddy which I'm really worrying about as he never stays away and when he has it hasn't been for more than a couple of nights. The last time he did was when Harper was in hospital at Christmas and he ended up really distressed. I'm praying that this time as he's a little older that he'll be okay. He'll be staying with my mum just a few stops away from GOSH.

I'm finding that I'm coping better by trying to forget about it and pretend it's not happening but the closer it's getting it's becoming harder to ignore. I've always been the one that's been fine to talk about Harper's condition and have thought I was strong in some ways as I've always seen the positives and have always known she would be okay. But now that we only have 2 weeks left I've become a wreck..the thought of what she's going to go through breaks my heart, I know we've been extremely lucky with Harper, Heterotaxy is so complex and affects every child differently..Harpers being on the 'better' end of the scale, but I can't help feeling so unlucky right now. We should be excited planning our little girls 1st Birthday, instead I'm finding myself praying that she's going to be okay. 



She is the happiest, most loving baby ever. My little fighter, I'm so proud to be her Mummy xXx