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Evelynn was first diagnosed with CDH at our 17 weeks scan as I was already transferred from my choice of hospital to fetal care at Nottingham queens medical centre as we first though she had down syndrome with the amount of extra fluid was around her neck

When our doctor told us she had CDH I had no clue what he was talking about I’d had never heard about it before getting pregnant I got home and did all the research out appointment was never sugar coated about her survival rate witch was at a 50/50 until she also got diagnosed with encephalocele witch brought her numbers right down to 10-5% chance survival after birth we never thought shed even make it down to the nicu because the doctors said at 33 weeks that shed be stillborn they even put on my notes stillbirth even though she still had a heartbeat she was still fighting strong inside

I always tried to shove of the negative side of things and always looked for the positive side because I didn’t want to believe that I’d lose my baby I’ve carried for so long I was very oblivious to how poorly she was because I didnt want to believe any of it

I was always in and out of hospital because they always thought I was in early labour as I was showing signs on the Ecg monitors I had 2 amniocesits to remove the extra fluid around Evelynn-ray as I had really bad polyhydramnios the 2nd drainage sent me into proper labour 2 days after having it done I was rushed to the hospital straight on to labour ward and I was 5cm dilated I was only allowed gas&air until I was fully dilated then I was allowed morphine I was scheduled down for a c-section but they wanted to see if I could go natural but she got stuck in my pelvis and wasn’t able to go down any more so I was rushed of for an emergency c-section

At 2.35pm on sunday the 1st may 2022 Evelynn-ray entered the world I was so shocked I just couldn’t gather myself together then the wheeled her past me in her incubator and said shed be now going down to nicu I only got a quick glimpse of her as I was still out of it from all the medication I’d had

When i did get to finally meet her properly i was so in love she was so tiny born at 35 weeks weighing 5lbs 6.5oz she has so much hair so curly and dark brown like her daddy’s she was doing okay at first they got her oxygen down from 100 to 35 but it soon all turned down hill 2 days later she was back up too 100% on her oxygen her ventilator changed to oscillator she was on so many different medicines 20% nitric oxide until the friday we had a big meeting and they’d come together and decided that they’d done everything they could for Evelynn but she was still trying to fight so we gave her them extra 3 days before the next big meeting to see if she could fight any longer

Monday the 9th may 2022 the worst day of my life Evelynn-ray had lost her fight and it was now just all of the machines keeping her alive so we all came together as a family and decided it was time to take her of the machines as it just wasn’t right to keep her alive through machines it was such a tough decision but the right one

Evelynn-ray passed away that night at 8.05pm I spent as long as I could with her after I even got to Bath her she was so cold I was so scared to hold her but I didn’t want to let her go but I couldn’t stay in hospital any longer so I got discharged late that night I just left with an empty heart and empty arms i was so broken i cried all the way home

When the funeral directors had her body I went to see her everyday until the funeral saying my final goodbyes was gut wrenching part of my heart went with Evelynn-ray that day I miss my sweet girl so much

Thankyou for reading xx