Hi Everyone,

Well, where do I begin?

On February the 1st, 2024, I found out that I was pregnant. Mine and Chris’ first baby together and I was so incredibly nervous to tell him. 4 confirmed pregnancy tests later, I bought a tiny baby grow saying born in 2024 and armed with a positive test, I headed to Lincoln to share the news with Chris. I remember being so anxious of his response to our unexpected surprise but he was absolutely overjoyed! We were about to become parents again, together

Baring a bit of hyperemesis and occasional dehydration, pregnancy was going relatively smoothly and nothing flagged on his 12 week screening scans or his gender scan to suggest anything was wrong so, surrounded by family and friends, we announced to the world we were expecting a happy, healthy, baby boy, due October and life couldn't be better

Our 20 week scan was incomplete because of how the baby was laid, so we were invited back 3 weeks later for a rescan. And this is where everything started to sadly change for us. The 23 week scan flagged up a potential cleft lift and palate, but the consultant made a passing comment that although cleft is often an isolated thing, it can sometimes be part of a bigger problem regarding chromosome disorders, and this made us panic. A couple of weeks later we opted for an NIPT blood test that screens for chromosome disorders and we were absolutely devastated to receive the call that informed us there was a high chance our baby would have Trisomy 13, Patau's syndrome. Our world's fell apart as we learnt more about the condition and that it is considered life limiting.

We were left with a decision to make, do we continue, or do we terminate. It was a no brainer for us, we were at this point, 26/27 weeks in and we had already felt our baby move, kick etc and we had bonded. We wanted to give him every possible opportunity and most of all, at that point, we wanted to meet our baby. Weeks and weeks of medical professionals telling us and preparing us that our baby boy would be born with multiple major organ defects and would most likely pass within hours to days and an amniocentesis that confirmed his condition and the likely outcome, our world crumbled and we began grieving our baby and what could have been. But again, after being reminded we could terminate at any time, we chose to continue to be able to meet our son and to make as many memories with him as possible in our short time as a family. So with our induction booked, we painfully continued on.

Tuesday the 24th of September came around and our induction process began, 8 and ½ hours of labour later and our beautiful baby boy, Jaxon Henry Peter Ball, was born, weighing a healthy 6Ib, and with no initial obvious issues aside from his cleft lip and palate. He was Instantly perfect to us.

The last 11 days have truly been a complete whirlwind of emotions, hormones, anxieties and apprehensions, but most of all, lots and lots of love too! He's jumped hurdles we never expected him to, we've had moments of stopping breathing, we've had moments of staring at monitors and worrying about bloods and scans etc to moments of freaking out because home has been mentioned and we never planned or prepared for that and we have pretty much nothing!! (were advised not to buy as we were expecting an immediate emergency situation at birth).

As a family we are totally in limbo currently in all aspects. We never expected this. It's unplanned and unprepared for and creates so much anxiety and stress. Juggling the challenge of literally living on neonatal intensive care ward to be by his side since birth, trying to love and manage other children who are also struggling with the unknown apprehension and home sickness, self employment (obviously not working so not earning), Chris is due back from his paternity but still needed here as time is limited and we currently don't qualify for other income/government help and don't know what we will do eventually/when, and having to potentially purchase everything we need to take our baby home. The challenges of life are wearing really heavy at the moment with it feeling like we are torn between two different worlds. So after being advised to do so, I am reaching out and asking for support in any way people can to help ease some of the burden during this really uncertain time. We know time is limited with our baby and want to be able to spend as much possible time as we can with him while he's here with us and we figure out what the future now looks like for us all.

Asking for help and support is and always has been my biggest challenge, so I'd just like to take the time to say a massive thank you for reading our story and for supporting us during this really uncertain and challenging time. We love and appreciate you all!

Each day as it comes