In my last post I spoke about the things that had gone really well in the last year and things that hadn’t been quite so perfect.
This is a post dedicated to a very special little girl who I wanted to write a lot more about and so decided to do it separately. I want to write in memory of Lily whose 1st birthday it is this week and how her and her beautiful family have taught me and many others an awful lot ❤
When I arrived at Jessops for my 12 week scan with Albie I noticed an old school friend in the waiting room waiting for her 12 week scan too! It was lovely to know that throughout my second pregnancy journey I had someone I already knew to share it with and I was very excited to be able to do all the pregnant mum things together. It’s always funny when you see someone you know in the waiting room as its like you know their secret before the rest of the world which is obviously very special.
From that moment on Ella and I bonded a great deal and constantly messaged daily about our bumps and baby things. We both joined pregnancy Yoga and saw each other every week and compared bumps and funny pregnancy stories. I was inspired how Ella took everything about being pregnant in her stride and even planned (And successfully had!) a home birth without showing any fear at all.
Our babies were due a week apart and so towards the end we were messaging all the time 😊 Lily was born on the 29th September 2016 at home (still amazed!) ❤ I was waiting excitedly for a message telling me whether it was a boy baby or girl baby so that i could dash to Meadowhall for a present before I finally popped too.
I always think it’s important to give people a week or two before visiting them and so I dropped off a bag of presents in Ella’s garden and sent a quick text telling her to go find them! It was lovely shopping for a baby girl because we already knew we were having a boy so hadn’t even looked at the beautiful girl things!
Albie was born less than a week later and so then we had our own crazy new baby life to cope with. Ella and I continued messaging and it was lovely to be able to talk to someone during those early hours when the rest of the world was asleep.
After that it is all a bit of a blur. Ella messaged to say that Lily hadn’t been putting on much weight and the next thing I knew they both went to Sheffield Children’s Hospital and were transferred over to the specialised heart unit in Leeds.
It all happened extremely quickly and I couldn’t understand how it was fair that we were at home with our new baby just as we both had planned and Ella and Ryan were no longer at home with their baby girl. Why?
I was desperate to go and support them but obviously I’d just had a baby too and couldn’t take him with me. This wasn’t the coffee dates and mummy mornings we’d planned? We arranged that once they were home we’d get back into all the things we had planned together and then it would all be okay and we could continue our maternity leave plans together.
Lily was diagnosed with TAPVD (Total Anomalous Pulmonary Venous Drainage) where 2 pulmonary veins from her lungs weren’t connected to her heart correctly. Lily had a larger than average ASD (Arterial Septum Defect) and as a result of having abnormal pulmonary veins she developed a condition called Pulmonary Vein Stenosis. We were all very shocked.
It was very important to me that I met Lily and wanted to see Ella with her beautiful baby. I went to visit her and Ryan at Bluebell Wood Children’s Hospice on the 24th January. On the drive there I remember feeling so anxious and promising myself that I wouldn’t cry and that I’d be strong for them. Obviously I wasn’t and cried the moment I walked through the door! I don’t know why we all put so much pressure on ourselves to be okay!
I remember how much Lily was just like Albie and I couldn’t and still can’t understand how this was all happening inside her but on the outside she looked so beautiful, smiley and content. Life is so so unfair at times.
That was the first and last time I ever met Lily and I still can’t come to terms with the fact that we will never see her again. After undergoing 2 open heart surgeries and five other procedures in her short life, Lily sadly passed away from PVS 3 weeks later on the 10th of February 2017. It is important to mention that the conditions that Lily had are very rare, 1 in 10 million to be exact.
We held Ivy’s 6th Birthday this year at Virgin lounge in Sheffield and donated the money it cost us to hire out the room to Bluebell wood hospice in memory of Lily. I aim to continue remembering Lily in ways like this with my children forever.
During all this and still now Ella and her family are never far from my thoughts. Ella spoke so well about everything throughout it all and when I saw her at Bluebell wood she was bravely planning the next steps for Lily. I was and still am in awe of her.
Throughout it all Ella was always open about what was going on and always asked after Ivy and Albie. That I thought was just incredible – to ask after my children when all this was happening in her world. Both Ella and Ryan did Lily proud when they bravely spoke at her funeral and have continued to progress with their lives and careers following Lily’s death.
“The greater your storm the brighter your rainbow”
In their 1st year, they both returned to work successfully, bought a house and are expecting lily’s baby brother in January! YAY😍
You guys are incredible and such an inspiration ! I’m so touched I was a part of your journey and can’t wait to see what your future holds. Your journey has massively impacted on me and the decisions I now make. Lily inspired the beginnings of ‘childcare_adventures’ and I hope to do her proud !
HAPPY 1st BIRTHDAY LILY 🎁
Ryan, Ella and Lily your family is amazing,
1 in 10 million infact x