Don't fear the reaper!

Last night was the best disturbed night ever! We are craving a good night's sleep so bad but after having George We retired to bed around 11:10pm following George's 11pm drugs. George went down nicely, Natalie and I brushed our teeth and settled in bed.

Less than a hour later, George is crying. Here we go we both think. We get him out of his next to me crib and try to console him. It doesn't work. Morphine and paracetamol is what's needed.

Natalie disappears off downstairs to draw up his meds. She returns to the bedroom and administers them. They seem to work and calm George down. Now pain free George decides that he will continue to be a night time baby.

At 1am I decide to take him downstairs to the living room. I can lie on the sofa watching tv and he can fall asleep lay on top of me. George refuses to sleep but remains reasonably calm and seemingly pain free. Natalie joins me at 3am and tags me out. She cuddles and comforts George for the next hour and we all go to bed at 4am.

We all went to sleep and remained in bed until 6am.... the dogs decided that they were ready for breakfast. That's it, 2 hours after going to bed, our day is staring.

George has had a much better day today and we are feeling on top of the moon that hes not suffering from infantile spasms.

Whilst waiting for the gazeebo to be delivered, I scour instagram for more HIE children to follow enabling us to draw on others experiences. Requests to follow several different accounts are submitted and are subsequently approved.

I have a little look at the latest pictures. My eyes are drawn to a lovely picture of a Mummy, Daddy and Baby lay on a bed. What a lovely picture I'm thinking.... until I read the narrative. It was a picture of Mummy and Daddy lying with their child that they lost at just 11 months.

Absolutely heartbreaking and a grim reality check for Natalie and I. We try to remain positive but we are realistic. I start to read the comment to Natalie, but don't progress much further than the first few lines. Tears falling from my eyes and bottom lip quivering. There was nothing nasty in the narrative but we are seeing the reality of a HIE grade 3. A family losing their miracle baby at 11 months. George is rapidly approaching 6 months. We are cherishing every day we get with him and hoping we can enjoy some days out soon but we are both extremely fearful of the reality of our situation.

George has changed our lives for the best and we will be forever grateful. We just live in fear of losing him and can't shake that from our minds.

We really hope that he will live a long life and we will do everything we can to ensure that we make lots of memories as a family.