Tuesday, November 08, 2011


We left the Children's hospital at 10:30 yesterday. In order to get a taxi with a rear facing infant carseat we had to hire a chauffeur which meant I had the door opened for me, got called "Ma'm" and sat on leather seats....at got to pay $101 - ouch! Our plane got delayed (of course, JetStar) and we got to hang out at the airport being all ordinary and stuff. Well, as ordinary as you can be when you are syringing milk into your baby at a rate of 1/2ml every two minutes for an hour. Kaylee's ears hurt a few times on the plane but other than that she was a gem and seemed to like being in her sling.

About ten times over the course of the day I had this conversation:

*gasp* "Oh my goodness she is so beautiful! And little!"
*smile* "Yes, she is"
"How old is she?"
"Two months."
"Ahh, she was very prem then."
"No, actually, she was born at 41 weeks"
*confused look*
"She has a rare genetic condition called Cornelia De Lange and as a part of that she has a heart condition. We are on our way home from our first heart op."
"Oh poor little thing!"

It is not a bad conversation to have (and one I have had any time I take Kaylee for a walk, even on the wards) and the general consensus is that Kaylee is beautiful. There are moments I would much prefer just to blend into the background and maintain anonymity but by about the fourth child I realised that blending in was no longer an option! I just have to work hard to make sure I am a good ambassador for large families, Cornelia De Lange, heart kids, cleft palate and all the other exclusive cubs we are a part of. My daily prayer is that through this I can still be a good ambassador for Christ and I find myself having to draw on His strength more and more the closer I get to home. My impatience to get home is bleeding in to a general impatience and I have to work hard to walk that line between advocating for Kaylee and myself and being a shocking bossy boots!

We didn't tell the kids that Kaylee and I were coming so it would be a surprise and so they wouldn't be disappointed if it didn't happen. And also so Jon didn't get five young children electric with anticipation to deal with - Jon and I were bad enough.

Seeing them was like a drink of cold water.

Now there are only a few things for us to sort out before I can go home and I am sure the nurses here will be very happy to get rid of me. I have spent all my time on acute care wards where medication times are kept to strictly, nurses study up handover notes as soon as they are handed over, breast milk is treated like liquid gold and everything is double checked. Here on 4K the nurses are completely overworked from what I can gather so they often have me standing at the nurses station quietly harassing them for the things Kaylee needs! It is very hard to walk that line consistently.

Home sounds good.

Blogging will be less frequent when I get home as life will be for living rather than writing about. I am hoping we will be home for a couple of months. We will be going back to Melbourne for a check up mid-December and having weekly checks with our doctor here in the mean time. We will also have all the early intervention stuff happening.

A new chapter of our adventure.


Seaweed and Raine said...

Hooray for being almost home! :)
And seeing the rest of the fam!!!
Remember to treat them with the respect and courtesy that you want Kaylee to be treated with and your "Bossy Boots-ish-ness" will be kept in check ;)
Oh, by the way - I am inspired... by Susanna Wesley. I've been reading about her this week. WOW. Have even tried implementing a couple of things with the kids. :)

Momma Bug said...

Yee-HA! Thanks Lord!

Anna S said...

Enjoy sleeping in your OWN bed when you get there!