Dearest friends

{written yesterday}


How’s the baby I hear you ask?

She is doing well. Her breathing was a bit slow at times this morning but nothing bad or dangerous. She still has nasal prongs but it is just puffing a bit of air into her nose to remind her to keep breathing. She had another Lumbar Puncture today which isn’t nice, but the outcome will determine how long she is on this massive dose of antibiotics. The central line got put back until tomorrow and I will be meeting with the anaesthetist at 7:30am. She will fast from about 4am which she hates. She quite likes getting her food constantly drip fed to her through the tube that goes through her nose into her belly. She prefers that to 3 hourly feeds that were being put through the tube. It got put back to drip feeding because a big feed was too much load on her heart and lungs and made her sleepy…and forgetful when it comes to breathing! I am getting more involved in her day-to-day care which is scary but good.


How am I?

A friend took me out shopping and for lunch today. In spite of the nail marks on the footpath where I had to be dragged out, it did me good. She caught me on a downward swing and it was a toss up which I needed more – shopping or a sleep – but after I came back, expressed and napped, felt so much better and expressed 100ml. I saw a quote weeks ago that I thought was funny at the time but it scares the crappers out of me now. It was “Whoever said ‘don’t cry over spilt milk’ never pumped 60ml then accidentally dumped it.” I think of it every time I am putting the lid on what I express! I live to express. There are three things I can do, I can touch, I can sing and talk and I can express. Woe betide ANYONE who messes with those. I was talking to another cardiac Mama and she agrees. We walk around with these stunned looks on our faces clutching our breast shields. The fact that I have peace with all this should not in any way be taken to mean I am OK with any of it. I AM NOT. There are not swear words invented to describe how awful and unfair this is. How unfair to Kaylee who has to endure all this. How unfair to me, to Jon and to the other children. NONE of this is OK. It makes me hate Sin all the more. Today was better than yesterday. I didn’t lock myself out of my room once. And right this minute the ground beneath my feet seems steady and solid. We won’t ask about five minutes ago, or how it will be in five minutes to come. To paraphrase a scripture – “Do not worry about what will happen in [five minutes time], [five minutes time] will take care of itself. Right now has enough worries” – I may have changed that one a little.
I need to go and express, cuddle my girl and read her a bedtime story;
I am a phoenix. I am just at the flaming and ashes stage. I will rise from this and I expect to burn and rise a thousand times in this adventure with my girl. I am determined to rise more beautiful each time – I will not waste this pain.

Thank you for your prayers.