When The World Changed…
As soon as coronavirus hit the UK I was worried. I knew that Amelia would be one of the most vulnerable and it scared the hell out of me. An innocent cough can put Amelia in hospital and on oxygen for a week so I didn’t even want to think what Covid 19 could do. We had to take precautions and started isolating ASAP. I started to worry about Amelia’s tube and if she would pull it out (which she does all the time) what would I do?
Usually I would wait for our community team to come and place another one or we would have to go to A&E. The thought of going to A&E during these uncertain times filled me with compete dread. So it was time for me to learn how to change a tube. My community nurse came over and showed me how to it, I had seen it done so many times that I was ready to do it myself. I felt really proud of myself, I was doing something for my daughter that would help her so much. No more mad rushes to hospital as I could protect her from home. The relief that Paul and I felt was amazing, there was no more panic and anxiety if she pulled out her tube.
If you had told me 6 months ago that I would be changing nasal gastric tubes I would have laughed in your face and most likely thought it was disgusting. When Amelia was in the NICU I found it really tough to feed her, it was so alien to me I couldn’t do it. I was so scared I would hurt her or get it wrong, the whole tube feeding thing completely plagued me with fear. Paul took the reins on the feeding, he was so good at it. Even when we got home I was still really shaky and just wanted Paul to do it all.
Now tube feeding is the normal and I completely forget that other families and babies do not have to go through this.
Since lockdown all of Amelia’s appointments were cancelled and changed to telephone appointments. To be honest it was nice, as we didn’t have to drag her out on long journeys and mess up her feeds. Apart from missing our family and friends, the first few months of lockdown were lovely. We were able to have all of this time as a family of four that we would never have had. Paul was able to have all of this time with Amelia that he would never have been able to have. It was lovely watching Penelope grow into this inquisitive little toddler. Birthdays came and went. There were no parties but lots of deliveries. Tv was different and watching the news and daily updates became part of our routine. GMB, Lorraine and This Morning definitely helped me through. They also increased my shopping habits.
After a while it got harder. Not being able to see family and friends became difficult. Especially not being able to see my mum. The help we would usually receive for Amelia and for us as a family wasn’t available. It was difficult but it has sort of become normal now. It’s been very confusing for us as we have been shielding for Amelia. The government guidelines didn’t really have any guidance for us so we were just doing what we thought was right and I was asking other families similar to ours what they were doing.
I do believe that everything has changed now, I worry all the time about Penelope catching something, as whatever she gets Amelia will undoubtedly get too. A little cold or bug for Penelope is nothing but for Amelia it can be fatal. It has made me reconsider everything, soft play, playgrounds, having other children round to play? I sound like a neurotic mad woman but I just want to have Amelia here and as well as can be. I think it’s about finding that happy medium. We can’t protect Amelia from everything, all we can do is eliminate as many risks as possible.
It is harder now, when Amelia goes into hospital I will be there most of the time. Before I could get away for a few hours because she was so young and didn’t really understand. Now she looks for me and wants me there. Of course I will be there as much as possible but then I feel guilty on Penelope, and how will we work it out whilst Paul is working? These are all things I have to factor in when we do anything. I have calmed down a bit now but it’s still extremely difficult. I’m hoping that because everyone is taking extra care that it will be a bit safer. If we can get through a winter season with one hospital stay that would be amazing.
The whole way of life has completely changed, before I would hug everyone now it feels like everyone has this glass antibac wall up in front of them, we are all scared to embrace. There is nothing better than a good old hug from your parents or best friend, but Covid has taken that away from us. I think it will be a long time until we go back to anything like how it was before, or even if we do at all.