Hello, my name is Nicole Loxley, haydi-Rae’s mum, haydi-Rae was diagnosed at 3 weeks old with trisomy 18 and we were giving just a short 3 months life span with her, haydi has been through so many hospital admissions, infections, viruses, declined by medical professionals for heart repair even with me and her dad saying repeatedly we want it doing, she’s just not viable apparently & apparently the holes in her heart arse saving her life due to severe pulmonary hypertension they are blowing the pressure out. even with this all going on she defies everything and fights daily, she is now over 13 months old. She’s cheeky, happy, smiles, laughs, rolls all over, chats away to you, lets you know when she’s sad, happy and hungry, haydi-the is on constant oxygen and NG fed, she is the bravest little girl I have ever met and me, her daddy and big brothers and sister love her so so much. The last 3 weeks have been very challenging & this is where I’ve put myself, I really don’t do things like this and honestly I don’t like too, but the last 3 weeks haydi-rae has been unwell, she’s been in PCCU, on high flow, BPAP, CPAP, many of antibiotics, IV antibiotics, feeds stopped and put on fluids, many bloods taking, tests done, EEGs, because 3 weeks ago haydi started developing seizures again, but seizures where she stops breathing and her sats plummet down into 30s, they happened quite a lot in the beginning the seizure medications were started and they stopped, then she had one massive one and needed a lot of help. She went almost 2 weeks without a seizure and back on her normal oxygen her saturations are now allowed to be 75% which I think is very drastic. She didn’t tend to sit at that she sits in the 80s usually 77 lowest, then early hours of this morning seizures crept back in, she had multiple and again her sats went to low 30s and she had colour change and struggled to bring herself back up without help. They’ve managed to get her sats up on high flow and to stop the seizures again so now we are just in a loop and so confused and just begging the doctors for answers and help. She’s so strong she still smiles and gives us kisses. But this is taking a toll on us as a family I only work 3 shifts a fortnight since haydis diagnosis & her dad is currently on the sick as he doesn’t want to work whilst she’s in Pccu & keeps taking 10 steps back and ending up so unwell again. I know a lot of people follow haydi-Rae’s story, & are inspired by her. She is still thriving this is just a rocky patch what our trisomy 18 babys tend to reach❤️‍ but she will keep fighting and I will keep fighting for her we all will. So please in you can share this & share haydi-Rae’s story! It really does mean the world

love

Nicole x