Maternity Leave!

19th November 2015 - our first morning at home as a family! We had been discharged quite late the day before and so by the time we got home, had a quick dinner and a cuddle from the grandparents, it was time to settle down for our first night. Now I know most people say they sat up all night watching to make sure their wee ones were breathing etc but I'm almost ashamed to say that as soon as Lucy was asleep, Adam and I were out for the count too! 

Waking up a couple of hours later to see her face next to me was amazing! I could hear her wriggle about as she stirred looking for her first feed. As Adam was still off work, he took her and changed her nappy and I settled myself in her nursery ready to feed. It all felt like a dream (and not just because of the sleep deprivation)!

I think because we had been in hospital with Lucy for the last 8 days we already knew what to expect with her and had a bit of a routine with night feeds that we settled into it at home quite well and it quickly became my favourite time of day; just me and her, having a cuddle in the peace and quiet. I loved it!

Once Adam had returned to work, I did most of the night feeds although he would take a turn and let me express in between.

I was persevering with breast feeding as it had been a dream of mine for so long but once Adam had gone back to work, feeding every 2 hours, making bottles to top her up (because she couldn't suck for long periods, she didn't get enough and in turn my milk supply wasn't great) and then trying to express as well as look after Lucy soon began to take its toll on me.

Our health visitor attended for a weekly weigh in as this was the first sign of any health issues for Lucy in that she would struggle to put weight on. One day when she visited a few weeks after we came home we had a good chat about how I was struggling with the feeding situation and we agreed that it would be best to switch to formula.

 
I was devastated however I knew Lucy needed to be a certain weight before they could perform her first surgery and I also knew that I wasn't getting to enjoy my experience as I was worrying so much about feeding her.

After that, we had a few hiccups with major colic and milk allergies but once that was sorted, Lucy continued to thrive and life became so much more enjoyable.

We attended Glasgow initially every month for regular reviews. She would have her weight checked, and ECG tracing of her heart and then an echo scan prior to seeing her consultant who would then check her oxygen levels and general health.

We have always been so very lucky with how well Lucy has done given her diagnosis and never take this for granted. The weeks leading up to her hospital reviews are the worst times of my life and my anxiety really escalates.

One time when she was only 6 weeks old, they had to make 7 attempts at inserting a needle in her wee hands and feet to get bloods. She was crying so hard and I was hysterical. The bloods were necessary and I think situations like these have left me a little bit hardened to the world in a way I'm not that happy with but I think it's a way of my mind protecting my heart for the bigger mountains we need to climb.

I quickly settled into my maternity leave, meeting friends for lunch and getting out and about with Lucy and enjoying our days as a family when Adam was off. We were finally living the life I knew I was meant for. Being her mummy is the best job in the world.

We celebrated Lucy's first Christmas 6 weeks after she was born and then in January it was time for her next hospital review.

Once the usual tests had been carried out we went into see the Consultant. Lucy's oxygen saturation were sitting at around 73% (heart healthy people have says of 99-100% and levels below 80% can lead to serious complications) but for Lucy this is normal.

Given how low her levels were, the Doctor decided to admit her overnight, not because she was ill but because she shouldn't have been as well as she was with the levels she had! This was just another sign of what a warrior our girl is.

The next day, it was agreed that Lucy could go home and that they would look to perform her first open heart surgery in approximately 6 weeks time.

We got the call a few weeks later to say she was to be admitted for a cardiac catheter on 15th March with a view to performing her Glenn surgery on 17th March - we were hoping the luck of the Irish would be with us that day.

The weeks between that call and her admission were hard but we also wanted to enjoy them as much as we possibly could as we really didn't know what the future held for us.

We had a wee weekend away and I got to celebrate my first mothers day (exactly a year to the day that Lucy was implanted in my tummy).

Unfortunately my gran had also taken ill and was in hospital. I went to visit her the day before our admission as I didn't know how long it would be before I would get back to see her. All she was bothered about what that Lucy was ok and she sent me off with strict instructions to focus on Lucy and not to worry about her.

We went for lunch with all the grandparents which was a solemn affair but we tried to be as upbeat as possible. My mum and dad were both completely choked with the cold and couldn't have any proper contact with Lucy as we couldn't risk her getting unwell prior to her surgery.

Saying goodbye to them in the car park was so difficult - difficult for them as they couldn't hug her and knew that would be the last time they would see her before her operation but also difficult for me because I really needed them at that time. I know how guilty they felt but there was nothing anyone could do and we all knew it was the best thing for Lucy.

Paul and Nikki came to visit that night to take our minds off the next day and when they said goodbye to Lucy I couldn't even speak. We all knew what they were really saying but none of us wanted to acknowledge that.

We had to be in the hospital for 3pm that day and so we got up and went into town so Adam could get a haircut and Lucy and I wandered aimlessly while we waited.

I bumped into one of the Doctors I used to work with and he asked me if I had had word of Lucy's surgery yet. I think he was then sorry he had asked! The flood gates opened and I just couldn't be strong anymore!

We decided to head off for the hospital early just in case of traffic but we were so early we went for a stroll round the nearby shopping centre. To the outside world we looked like every other family but inside we were crumbling.

We took Lucy to Build'a'Bear and made her a beautiful teddy to take into hospital with her. Ed the Ted (named after the Consultant who performed her surgery) was a patchwork teddy of beautiful colours; just like Lucy with her scars and vibrant personality! We also gave the bear a heartbeat as it seemed fitting at that time.

Eventually we couldn't put it off any longer and we headed to hospital with our beautiful girl somewhat ready to fight our way through the next few days.