I can't believe we've been doing this for a month.
We are still in Launceston. We had Kaylee loaded up and literally at the door ready to fly out when the Flying Doctor's Service had a higher priority case take the plane. Then when the plane was available, there were storms brewing over the Strait and Melbourne and they were unwilling to fly a fixed wing double-prop plane through those storms - especially with a sick baby in the back! My nurses were working hard to cancel my commercial flight out at 6am when there was a call from the Flying Doctor's to say they were re-evaluating the weather. As soon as Sandy, my nurse, put down the phone it rang again - the travel co-ordinator calling to say she had cancelled my flight. So there was a mad scramble to rebook that flight only to find out that the storms were too bad for the little air ambulance to fly through and Kaylee would not be flying out after all. At this stage I had a shower and went to bed! It continued all night and I woke up before sunrise with the director of the hospital standing over my bed quite cross that I had not been on the 6am flight that the hospital had paid for. I was too groggy to explain that I was not going on a plane until my baby was on a plane. I have NO desire to fly over, find out that Kaylee couldn't come over for some reason, and then spend the weekend in Melbourne without my baby, unable to use the breast pumps or sleep at the Royal Children's Hospital because Kaylee was not there. So at last check, we are planning for Kaylee to be leaving about 10:30am and hopefully once she is gone we can book me on a 2pm flight. And if the director of the hospital has a problem with that, I will pay for my own darned flight!
While all this is frustrating, I am relieved not to be rushing a very sick baby out the door. NOT being the highest priority case in the state is fine by me.
I am insanely jealous about now of mothers who have healthy kids.
I am sick of travelling.
I want to take Kaylee home to my other kids and my husband and just have a normal day with all of us under the same roof.
Just having all of my kids in the same room for the first time would be amazing.
Kaylee is tolerating her hourly feeds well. Her de-sats seem unrelated to the change in her feeding. She seems to be waking up, spending much more time looking around. She is maintaining her body temperature well which is great. It is easier to go accross this time knowing where we are going and having friends ready to greet me.
I am simply praying for wisdom for our doctors at the moment. There are to many variables to try and speculate what our next step from here will be. The medication she is on is helping, but she can't leave the hospital while she is taking it. Doing the operation now would get it over with but she is still so small and delicate. And there are a whole lot of other options, none of which are much more pleasing than those two. I am kind of praying they invent some miracle pill to fix Kaylee's heart before we get to Melbourne. In the next 45 minutes would be good so they can post it down and we don't need to go at all!
But I will follow the path laid before me.
Not because I am brave or strong, but because I have no other real option.
I will take strength from my God for this journey.
And one day, this will all be a memory.