The Next Step

 17th December 2019 - We arrived early in the morning to the Children's Hospital so that Lucy could undergo a cardiac catheter. This would allow the Doctors to decide when would be a good time for her second open heart surgery (as if there is ever a good time).  We stayed at a nearby hotel overnight to make it a bit more of an adventure for Lucy as she was getting that bit older and starting to understand more.  When we arrived that morning we were told there were no beds in the PICU and so Lucy's catheter might not go ahead however while we waited, we were invited to sign the dreaded consent forms in preparation.  This is a job that somehow always falls on me and I've talked before about the guilt this brings with it.  

A further chat with the Consultant and we were finally given the go ahead for theatre.  We were given a room and changed Lucy into her wee hospital gown.  We explained that she was going to get some superhero medicine that would give her a big long sleep and that the Doctors would take special photos of her heart.  She was delighted with this and set off for theatre quite the thing.  We on the other hand were not quite so eager. Although catheters are relatively "everyday" surgeries, they are still invasive and come with risks of their own. 

Handing her over for general anaesthetic is never easy but she handled it like a pro, excited about becoming a superhero (little does she know).

The wait for news always seems to take forever and there is only so much coffee you can drink so we went back to our room on the ward and waited impatiently!  Finally a chap a door and we were on our way to meet her coming out of theatre. Out she came, slightly sleepy but still smiling.  The relief hit me like a steam train.

Back to the room and a request for pizza and a visit from her grandparents and Lucy was back to her usual self, no clue what we had all just gone through.  We stayed overnight and for the first time ever her oxygen level was 81! Her catheter had gone well and the plan was for Fontan surgery in April/May.

As is custom in our wee family, we went home and booked a holiday. This time to Centre Parcs in February. A chance to be alone as a family and to enjoy our precious time together as we yet again prepared for the unknown. These times are so precious to us, making memories, never quite knowing what the future holds and trying to make the most of life in the meantime.

And then along came covid! 

We returned from Centre Parcs the week before lockdown. We immediately went into shielding in order to keep Lucy safe for surgery; working from home and limited contact from those we needed most at that time.  It was all very reminiscent of her first surgery when I was on maternity leave and my parents had a cold so had to avoid us all in the run up to her operation. History was repeating itself but on a much higher level.

We were given the option to postpone surgery until later in the year however Lucy was due to start school in August and we really didn't want to hold her back from that and so we agreed to go ahead with her Fontan in the middle of a global pandemic! We never like to do things the easy way!

The dreaded phone call came in May whilst I was working from home. A date was given for 11th June and once my heart rate slowed down, I started making plans. 

I ordered Lucy's school uniform, partly to save any hassle later on but mainly because somewhere in my mind, having the uniform meant she had to be ok to wear it. It also let us take photos of what the future could look like.  My heart was bursting!

Our baby niece had arrived earlier in May. She was a much longed for wee bundle and we couldn't wait to see our girls together but because of Covid, this wasn't possible for the first few weeks and now the thought of never having any photos of them together was almost too much to bear. Again, as with her first open heart surgery, Paul and Nikki arrived at our house and handed over their precious girl for cuddles and photos, knowing only too well that this could be the last time our girls would be together. Sometimes rules just have to be broken!

On 9th June, we visited both sets of grandparents, not mentioning the fact that this would be the last time they would see Lucy before surgery.  I'm sure that they presumed they would see her the next day before we left for hospital but we felt it was easier to say goodbye as normal, both for their sake and for Lucy's. As selfish as it may sound, it was impossible for us to take on their emotions and so leaving as we would any other day felt like the easy option for us.  I'm not sure how it was for them, not being able to hug her or support us but as a parent, I can only imagine.

For us however, the hardest part was still to come.  Due to covid, only one parent was allowed to stay and so we set off for the hospital on 10th June, knowing that we had to say goodbye to Adam when we got there. That car journey almost broke me.  

He walked with us to the main entrance. He bent down to cuddle Lucy and say his goodbyes with people walking past and security watching over us.  Looking back, this was so inhumane and shouldn't have ever been allowed to happen.

I couldn't bring myself to look at him or say goodbye and walked away hand in hand with Lucy, tears pouring down my face. The security man gave me a reassuring nod. I had no idea how I would get through the next 24 hours alone.