Boiling frogs and warm fires

It's 4:30 am and I am sitting up using my breast pump and watching Kaylee sleep. 


She is doing super well.

We have only had to suction her twice this shift and then only a little bit.  I am going to ask for her oxygen to be turned off to see how she copes with it - I think she will do fine without it.  Over all she is doing brilliantly.

But I am not sorry we came.

Truth be told I was getting very tired and she was dangerously sick.

At home I was giving 6 hourly meds, 8 hourly meds, daily meds, managing her feed pump, using the breast pump and suctioning her nose every few hours day and night.  I didn't realise just how insane it was trying to manage all that plus do the other things I was doing until I stopped doing it all.  Just like I didn't really realise just how awful Kaylee was starting to look until after she was on oxygen and started to look better!

There are two reasons things got as crazy as they did.

The first is, it happened slowly.  If you put a frog into hot water it will jump out but if you put it in cold water then slowly add heat, the frog will boil alive - not realising that the water is getting hotter and danger is imminent.  I think I was a bit of a boiling frog by the time I brought Kaylee in to hospital.  I was looking at photos I took a day or two before we came in and  I was startled at just how pale she was.

The second reason is, Kaylee is my sixth baby but I am still finding where the panic buttons are with her and working out when I need to call in help.  A bit of a snotty nose that you just keep an eye on with another baby, really needs to go to the doctor with Kaylee.  A bit of a cold you'd just take to the doctor with another baby is a trip to the hospital for us.  A hospital trip for another baby - a plane trip to the mainland for us.  I still find it totally crazy that a slight cold that would have been a mild inconvenience for my other kids would have killed Kaylee if we hadn't come in for oxygen and treatment.

And it is further evidence that we are indeed in a whole new world with Kaylee.

Sometimes well meaning people try and reassure me that after Kaylee's heart surgery she will by "right as rain"  - but the truth is she won't be.  Her heart surgery is a huge hurdle and getting over that will free us up to address some of Kaylee's other issues - but on a day to day basis the biggest change initially will be two less medications to give.  And that's it.  Kaylee's feeding stuff, reflux stuff, cleft stuff, developmental stuff and all her other stuff will still be there and still need dealing with.  This isn't just a long term thing - for Kaylee, and for us, this is a life long thing.

Usually when your kids get sick you know they will get better.  They get chicken pox and as they whine and itch through the rash you know that in two or three weeks time they will have a few scars and childhood memories of watching TV on the couch.  They get appendicitis and usually, after the initial trauma of hospital and surgery, there is an expected recovery time and a life afterwards with only a scar for a souvenir.  With Kaylee she will not get better.  It is like a fair ground game where we use mallets to hit the gophers that pop out of the holes. 

I honestly do not know how people walk this road without a faith.

Because I believe, truly and deeply, that my daughter will be miraculously healed.  There will come a day that she runs and jump like other children.  There will come a time when she will have a voice to speak her mind.  There will come a time when she will bite into the fruit of the tree of life and use the leaves that are for the healing of nations.

But right now God is using this time and all the evil and horribleness that goes along with this world, to sand back the rough edges of my character.  He is blessing us and giving us what we need even while Very Bad Things happen.  And the good things don't make the bad things better, the bad things are still very bad.  But the bad things only make the good things sweeter.

And HOPE for the future is like a fire by which I warm myself on a cold night.