Is it still difficult?

Its coming up to the year anniversary of Georgia's heart surgery and I still find myself panicking about every little change in her.
I wish I had kept a blog from the moment she was diagnosed really, so that you all could have been on the journey with us, I think there would have been massive gaps in it though as sometimes exhaustion got the better of me and I couldn't function let alone type!
As much as we adore Georgia it has been the longest 2 years of our lives and I do kind of miss normality sometimes, but then this is our normal now.  Medications, Hospital appointments, watching her being poked and prodded, the constant colds and breathing problems.  She has been through so much but still manages to smile and is a little ray of sunshine to everyone she meets!
When she was diagnosed with AVSD and Situs Inversus Totalis I was 21 weeks pregnant and was told it was quite likely I would miscarry or she would die at birth, luckily she escaped both of those.  She was nothing like I expected at all, the main thing with heart babies is they don't look ill until they are really in trouble so when she was born all pink and beautiful I was under the impression they may have made a mistake.  They handed her back to me after the doctor had a little look at her and it felt normal, she was just a normal baby! She stayed with me for 3 hours until her breathing got bad.  Thinking back on it now I can understand why she seemed so well, the labour was easy and trouble free, therefore I guess she had no stress on her heart at that point but after a few hours of breast feeding she was getting tired and her lungs were affected as she couldn't clear them, she was all snuffles, little did I know that's how she will be for the rest of her life.
St Marys NICU were wonderful and very supportive when we didn't really have a clue what was going on, its very strange staying on a maternity ward with no baby next to you but we were allowed in to her whenever we liked.  Unfortunately being a small unit they didn't have the equipment to deal with a special case such as Georgia's so they were constantly on the phone to Southampton Cardiac ward to try and get her transferred.  That's a difficult thing for Southampton too, knowing there is a baby that needs attention but knowing that because of MRSA they needed a spare room for her to go into until they could rule it out as she was coming from another hospital. 
At 7 days old Georgia was moved to Southampton, my husband and I couldn't go in the ambulance with her so we got the ferry over and drove to the hospital after she had been admitted.  I remember how scared I was looking up at this huge hospital and thinking that she was all alone in there, it makes my stomach turn just think about the times I had to walk out of the doors leaving her there but the whole time my entire being just wanted to turn around and stay with her.  Completely tore me apart every day.
The Ocean Ward or E1 as its better known as, is absolutely amazing.  At St Marys she had this tiny little sats monitor on her foot (sats are the oxygen level in the blood), when we walked in to her room on E1 she was wired up to a huge monitor that was giving a constant ECG, recording her sats and her heart rhythm.  She also had a sleep apnea monitor on and was having a heart echo done.  All this was going on at 7pm!!!! Crazy!
So this is what happened in the first few days! Can you imagine all the thoughts and feelings you have?  I cant even describe the fear I felt but also the joy at her being where she needed to be.  Whilst all this is happening we still have Joshua at home staying with Nanny, I think the longest I went without seeing him was 2 weeks and that was only because I couldn't afford the petrol to get there!  I missed him everyday, but josh being josh really didn't notice anything out of place, he is such a well settled child that we were lucky he was really happy when he saw us but knew we would have to go again.  I will end this post for today with a story that not many people know, its a common misconception! We named her Georgia Louise Penny, Josh couldn't grasp that so called her wheeze (Louise), its very fitting and really suits her, most people think its a name that came about from her constant breathing probs and cough, but no........Joshua was right from the start! Perhaps he should become a doctor.