Home for Christmas after 19 weeks

Our daughter Matilda was born at 27 weeks, weighing just 665g (1lb 7oz), in August 2021 after I’d suddenly developed pre-eclampsia two weeks previously. She spent 19 weeks in two hospitals, before finally making it home just in time for Christmas on 19 December last year.

Up until the day we brought Matilda home, I don’t think we quite believed it was happening. It had taken a long time (and multiple steroid courses) to wean her successfully onto low-flow oxygen. When we left the neonatal unit with her it felt surreal. I think we were expecting someone to chase after us and ask where we were going, as surely it wasn’t just us and Matilda now. After so long in hospital, were they really trusting us to take care of all her needs? Even though I had spent almost all day, every day with her, there had always been other people to turn to with any queries or concerns.

Amazing yet scary

It was amazing to have Matilda home in time for Christmas, but scary too. We were told that any little illness could turn into something big for her. Therefore only a few close family members met her initially, and only if they wore a face mask and showed no signs of illness. They were thrilled to be finally able to meet her. It had been a long time for them only being able to see photos and videos of her. 

On Christmas day we spent the day at home, just the three of us. Some family members brought presents over but didn’t stay for long. Even though the day was not as we would have usually spent it, we didn’t mind. Having Matilda home was the best Christmas present ever. We mainly relaxed on the sofa together and watched Christmas TV. We had been expecting her to still be in hospital, though I know if we had been the nurses on the unit would have made the day as amazing  as possible for us all.

Joy to everyone 

I am feeling a lot more excited about this Christmas this year and finally being able to do all of the things we imagined. We want to take her to meet Santa for the first time. We are planning to spend Christmas day visiting family. It is amazing to see the joy she brings to everyone and I know everyone is looking forward to Matilda being involved in all of the festivities. 

Life has been a whirlwind since we brought Matilda home. There have been lots of amazing times but also some quite difficult ones. Luckily she is now doing really well and, after 14 months, finally came off oxygen in October.

We thought bringing her home on oxygen would be really difficult but we got used to it quite quickly. From early on we made sure to go on days out, and have been on a few UK holidays as a family too. 

Settling into our different normal  

Life is a lot different to how I expected it to be when I was pregnant but a lot of things are the same too. It is completely normal to us to have regular hospital appointments and different professionals involved in Matilda’s life. Matilda is really happy and content most of the time. We have been so lucky. Now she is crawling, she is into everything.I attend baby classes with Matilda and we like to go on days out with friends and family. The only difference is we have to plan things around her feeds at times. (She is on four-hourly feeds through her NG (nasogastric) tube at the moment.)

It is hard to put into words how the experience has affected me. It is now all I know and as Matilda is my first child I have nothing to compare it to. It’s difficult not to be envious of other people at times, but I try not to dwell too much on these things. I know how lucky we are to have Matilda home with us and we are so thankful every day to everyone that was involved and continue to be involved in her care. Thank you so much!

With thanks to Emily for sharing Matilda’s story.