Going Home…
Amelia was in Lister NICU for just under a week. She would finally be coming home on the 30th December, just in time to see in the new year as a full family. I remember panicking that the house needed to be spotless and germ free, and if anyone had a cold they couldn’t be here.
With Amelia’s condition, a common cold could mean a long hospital stay, so we were trying to put everything into place. Anyone who had a cold or temperature would have to stay away.
We had gone through so much in such a short time. We wanted Amelia home but first we had to go through a lot of talks, meetings and paperwork. A few days before she was due to be discharged, the sister in charge had a chat with us about putting a plan into action and getting Amelia home. To be honest everything from then is still a blur, I had home in my mind. She mentioned that she would be referring us to Keech, (at the time I had no idea what this was, but Paul did).
He couldn’t understand why we were being referred to a hospice when our baby wasn’t even home. The sister could then see the looks on our faces and said ‘she would be referring us for help, as they do this with most of their families and premature babies’
At the time I believed this, however it is complete crap. You are only referred to a hospice if you have a life limiting or terminal condition. We just forgot that it was even mentioned. Then we had a discharge meeting with the community team plus doctors and nurses etc, as Amelia would have a lot of people helping with her care. At the time I wanted the meeting over. I was writing numbers and names but not really knowing what was going on, I remember the sister saying something along the lines of ‘the family have been referred to Keech’ and again this went completely over my head. We were just so excited to finally get Amelia home. I remember leaving with her in the car seat and the drive home was amazing, I couldn’t believe she was finally in the car with us.
Having her home was incredible but bittersweet. I had wanted her home for so long but realised I didn’t know how to look after her. I found it so hard feeding her so I left it all to Paul as I couldn’t face it. It all felt strange and I was so worried about her tape coming off and having to go to the hospital if her tube came out.
The sleeping and feeding through the night was hard. We can’t leave Amelia to feed alone as she may choke, so we need to watch her and be aware whilst she is feeding. I found this very tough; especially the first few days of gravity feeding until the feeding machine arrived.
Penelope was amazed by Amelia and she would just stare at her and stand by her cot. I could see the love already, even though she did try to pull her tube out a few times. We were finally getting into the swing of being a family of four. I will never forget NYE 2019 with all four of us in our bed, (Penelope had woken up due to all the fireworks). It was amazing that we were finally all in our bed celebrating the new year together.
Just over a week later Amelia would be admitted to hospital with her first chest infection.