Yay modern medicine!

Listening to: Apropos of Nothing - Various Artists under the Angry Rabbit banner

We had another consultation with the surgeon who did Charlotte's TOF repair yesterday and got to see the results of Charlotte's Barium Swallow (linky) yesterday. The swallow was done since Charlotte hasn't progressed to solids as fast as she should, and can't in fact eat anything more solid than pureed and sieved vegetables at the moment. On the swallow images the area where the two ends of her esophagus were joined together is quite dramatically visible. At the site of the join her esophagus narrows to a width of about 5mm, which explains why even a grain of rice is too much for her to take.
The theory is that maybe some acid reflux from her stomach (which had to be stretched upward a little to enable the upstream connections to be made) irritated the scar tissue at the join site and stopped it widening with the surrounding tissue. This is a common complication for this surgery. To fix it, in a couple of weeks Charlotte will have a balloon run down her throat under general anaesthetic, which will then be inflated at the join site to stretch and widen the passage to something approaching normal. All going well, she should be able to eat more normally for someone her age. It would be nice to see those little teeth chewing on something we haven't mulched first.
It means some more hospital time for us (hopefully only a day or two), but we are kinda used to that, and we have seen lots of kids far worse off than her in recent times.

NB, for any newish readers unfamiliar with the story so far, my daughter Charlotte was born 9 and a half months ago with a defect known as Esophageal Atresia with tracheo-oesophageal fistula (linky, specifically Type A in the diagram at the top of the page), which was fixed surgically at one day old and kept her in the neo-natal intensive care ward for three weeks after she was born. Still feels wierd writing that down in a normal way.

Sprung

Charlotte was released on Monday afternoon, and has been settling in at home ever since.

In between eating and sleeping, she is learning the fine art of chillaxing (playstation controller shown for scale).
And the metal salute by the looks. Chur!

Unplugged

Listening to: Nobody Town - Heavy Jones Trio. A nice local Indie styles album that came out a few years ago.

It has been a good weekend. There has been fine and still weather, which makes the gales worth putting up with, and long evenings promising summer to come. For those of you reading who have only visited this place in the autumn and winter, I wish you could see it now.
In other news, Charlotte has now become a wireless application, finally shedding her monitors and longline IV tube on Saturday. Discarded parephenalia below:
Since going free range she has had more cuddles, a walk around the ward, her first bath, and is that much closer to coming home.

Serious but stable

Was Charlotte's official position description last week. She has improved a lot since then, although she is still quite dopey.

Especially after a feed yesterday:
However she is improving every day.

Which is good. This hospital thing is getting old. I have no idea how some parents can cope with this for months on end. I'm pragmatic about the whole thing; For me her outcome has never been in much doubt, we have known little different from her being where she is (aside from the 20 or so hours on day one, she has spent her whole life so far in the ICU), she is improving every day, and I know she will be coming home soon.

Still I am finding this very wearying, mentally and emotionally if not physically. I spent too much time in hospitals as a young child to relax in them.

It will be nice to have a cuddle without rearranging a bunch of wires first, and not have to go find a chair and bring it back, not to hear the incessant beeping of alarms and monitors (if not from your child, then from one of the other inmates), and nice not to see other babies come and go while yours is still there.

Still having seen some of the other patients I am grateful for what we have been spared.

***

I have other things to blog about, but for now will indulge in my penchant for crazy flying videos from youtube. Usual comment ignorance applies, and I wouldn't link them if they were fake. You can trust me to know how to tell the difference....

Firstly, courtesy of those wacky French:


And from somewhere high over England (caution, contains rude words):

Out of the box

In todays exciting installment, after nearly a week, we were finally able to get Charlotte out of the incubator, sans chest drain and cannula (removed yesterday), and ventilation tubes (removed today).

Looked forward to this all day.
Gee I look old all of a sudden.
She had a feed, and hung onto it, which is encouraging, and she has a voice again, more or less. One milestone down. She will still be inside for at least another week, but she is doing all the right things so far.

***

In other news, from the non-contact sport that is Indoor Netball. Tonight I caught my little finger in the net and had a good go at pulling the nail off (probably God saying it is time to trim the nails). That explains the blood under the nail. Where the blood on the ring finger came from I have no idea. After carefully checking, and finding no injury nearby, I can only conclude that it is someone else's.

I think there's something in that for all of us

up and at em

Charlotte came off the immobilisers today, and is one step closer to coming home. She is now quite animated, as opposed to floppy. A bit dopey though due to the morphine. We've only had one day when she wasn't on some kind of sedation, it is a state I am looking forward to.

Thanks again to all for your support.

***

Nice to see Wolf coming back to fortune next week. It has been a little flat without him, and the series must be wrapping up soon.

Small Mercies

Listening to: Ladyhawke-Ladyhawke. And the southerly rain pounding the house. Glad I got the washing in.

The album version of Ladyhawke's 'Back of the Van' is the same mix as the radio single that has been out for a while thank god. Thank heaven for small mercies. I hate it when great singles get remixed or rerecorded for an album release, and changed from the version that you fell in love with to something that isn't quite the same, and not better.

Slim (link) is a great example of this. They released two cracking singles, 'Rise up' and 'Bullet in my hand' back in 1999, but when those two songs were redone for the debut album in 2000 the production sucked the life out of them and they were shadows of what they had been. The album was kinda disappointing compared to the singles.

I'm in a mood for small mercies at the moment.

Charlotte hasn't changed her posture, but no news is good news as far as she is concerned at the moment. Her condition is stable and her indications are good. Fi has written from her hospital bed a good story so far, which I posted on her behalf here. The hardest thing at the moment is not being able to pick her up and hold her. I can hold her hand (which by the way has less mass than any one of my fingers or thumbs) but that is about it.

We will be able to do more in a few days, but now it is waiting, waiting, waiting.

Rumour Control

Just repeating a facebook note.....

Thanks heaps to everyone for passing on your thoughts and good wishes. We appreciate each and every one.

Just to stop the 'I heard this' and 'I heard that' loop from getting established (and increasingly inaccurate), I wanted to get an official version out of todays goings on in our little girls life.

After a good start it was noticed late last night that she was having trouble feeding, and this was quickly diagnosed as eosophagal atresia, a congenital malformation of the eosophagus. Basically she had a throat end and a stomach end, but they didn't meet in the middle. Naturally this would ultimately be fatal if not corrected, so she was transferred last night from Hutt to the Neo-natal unit at Wellington.

Today she had corrective surgery, which went very well, and the outlook and prognosis is very good, so nobody panic please. After seeing some of the other kids in her ward I am extremely grateful.

Its been a very long and stressful day, and we are all a little strung out, but we will get to bring her home eventually after she recovers, which is a better outcome than the alternative.

Other than that she is perfect, if a little impatient!

Tonight both mum and baby are doing a lot better than this time yesterday.

Introducing Charlotte Alexandra: