Central line day

Dear friends,

I am sitting on my bed eating a bowl of soup (thanks Anna) after along morning.

Yesterday Kaylee's central line placement got pushed back until this morning. I met with the anaesthesiologist at around 7am. Kaylee had a good night with a short period when she was unhappy with the world in the early morning but had settled again. The anaesthesiologist explained everything to me. He told me to settle in for a long day as he wasn't sure when they would have time, theatre space etc. I told him to take his time. If we have to wait then obviously we are not the most urgent case in the hospital and that is a good thing! I met with the day nurse then I went and expressed and took all my stockpiled milk down to the formula room as Kaylee was fasting. I came back up and prepared to sit and have a long cuddle and read to her when all of a sudden it was show time. So much for our long wait. We took her downstairs to get her ready. While we were standing around waiting Aaron, Kaylee's nurse, offered me a cuddle. I was about to say "Thanks, but we only just met and I'm not much of a hugger" when I realised he meant Kaylee. So I held her and sang to her and kissed her and called her all her special names (Tulip, Princess Hairy Legs, Kaylee Grace) and passed her over. I went upstairs opened my Bible to Matthew 6 - I know you shouldn't mess with scripture but I did change it from "do not worry for tomorrow" to "do not worry for five minutes from now" because tomorrow seems a long way away. I thought about Abraham offering Issacc. I thought about how Kaylee is God's baby. And I was OK. In some sort of surreal place, I was OK. I wrote my kids their emails and while there was a part of me that was wondering if this procedure would mean that I would have to tell them their sister wasn't coming home after all, I had a peace. I kept dozing off so I went back to the ward and sat in my chair with my feet up. I flipped open my netbook and set a slideshow of my kids going while I listened to music and laughed at the funny photos of my kids.

Then Aaron came in and told me that I could go down and see her in recovery. I ordered stand down and thanksgiving of my prayer warriors and went to check on my girl. She was highly annoyed and had blood smeared over her (Please Jesus, can I have a day when I don't see my daughter's blood?) and being highly annoyed messes with her breathing and heart rate so although it was fantastic to see her alive again, my head started to pound as I tried to settle her and the child in the bed next to us made a high pitched, keening wail and those bloody alarms kept going off. And I once again had to walk away.

I expressed and tidied up and gathered my bits and pieces knowing I would need to go and have some lunch and a rest. I went down stairs to see Kaylee resting quietly, the keening wail gone and no alarms going off. I kissed my Tulip then took her Magic Milk to be stored (we have a bit of a stockpile now after Kaylee fasting for procedures) and went up to my room to eat and decompress. I still have a voice shouting at me to RUN back to Kaylee's side. To not desert my daughter. But I need to decompress.

Cardio ward is not an easy place to sit. Alarms go off constantly and it is a concerted effort NOT to jump up and check Kaylee every time one goes off, even when it is down the hall. Us mothers wander around clutching our breast pump shields and mobile phones with a white fingered grip. If another parent meets your eyes you can smile and talk ("we got out of ICU today, yay, the comfy chairs!", "I spilt 30 ml of EBM last week. I cried for an hour"). If they don't meet your eyes or if you hear their child crying behind a closed curtain you leave them alone and whisper a prayer, feeling guilty that the prayer is as much thanksgiving that it is not your child.....this time.

Kaylee is stable, her (cardio) problems are simple compared to many of the children on this ward but she is 8 days old and has multiple issues and I have learned you cannot assume that because she is stable and happy now, the same can be said for five minutes time. Schooling myself to walk away, let others do for me, keep it together for her has been a huge learning curve. I think sometimes that it can't be as bad as it feels and try and step back to gain perspective. Then I quickly stop because it is actually worse than it feels.

I am being carried, thanks largely to your prayers.

Thankyou.