Thursday 23 June 2011

Game Set Match

Yesterday I took my little man for a follow up consultation with his paediatrician. Since Joseph was discharged on the 21st July we have been back to the paediatricians 5 times for follow ups. Most have been uneventful, until the penultimate one when she started to discuss Joseph not walking.

So yesterday I was hopeful that we might be discharged. We are so very lucky. When we were leaving the unit the consultants and registrars made sure I was prepared for the stark reality of life with a premature baby. Regular admissions for cold, coughs and flu. Numerous follow ups for developmental problems. Potential treatments for disabilities as a result of prematurity. Having worked in the disability field for many years, I was ready.

I found adjusting to life outside the unit very difficult. One of the big problems was that life wasn't what I expected. Joseph got colds. He snuffled, he sneezed, he got better. That wasn't supposed to happen. He took ages to learn to do stuff, sitting, holding food etc. But he did it. He started talking by one. Actual. 9 months corrected. That wasn't supposed to happen.

Our follow up consultations were 6 months apart. That wasn't supposed to happen either. I felt unsupported and scared, alone. It took me a long time to get into my thick, concrete reinforced skull that, actually, against all odds, my form 27 weeker dinky dot was absolutely fine. I wasn't prepared at all for the fact that some very small, sick babies, manage to escape life long problems.

So yesterday it happened. "We won't bother you any more, we'll leave you alone". Discharged. Of course the consultant had a bit of a whinge about Joseph's odd walking style. I reassured her that both orthoptics and physio were fine with this, and that it would settle down, and if not I would ensure he is re referred to physio.

It does feel strange. This last consultation was held on the unit where he was born. This time last year my dinky dot was in HDU, he was still tube fed. He was still on CPAP. I was still travelling every day to see him, worrying every day about what might happen. Walking on the unit yesterday was very emotional. Through the doors I could see worried parents, incubators, and hear the scary monitors. I don't ever have to go on that unit now ever again. It's weird. I do feel, in a sense, that our safety net has disappeared. But all the consultant ever did anyway was undermine my confidence and make me feel panicked and worried all over again. 

The funniest thing was, she said yesterday that Joseph would never be a tennis player. He would have coordination problems as a result of his prematurity. I found it hilarious. No child of mine is going to be a nancy boy tennis player, its either cricket or Aussie Rules, or as a very reluctant compromise he can play Rugby League. (I am joking of course, my humour doesn't always come across on my blog!)

But part of me wants to sign him up to Greenmount Tennis Club this morning, just to prove her wrong. He's done a pretty good job so far of proving her wrong.


  1. Congratulations! You and Corey should have a glass of champy to celebrate what a wonderful job you've done too. Joseph is a strong and resilient boy, but he couldn't have come all this way on his own.

  2. It's weird isn't it, how different professionals approach risk issues? I mean take my pregnancy for example. My ob-gyn virtually denied that there was any risk at all for pre-term labour. Using lines such as 'there's no evidence to say this symptom is indicative of that outcome etc' and then once it happens she says 'well at that time there was no evidence, so it was of no benefit to make an issue out of it' where as my friend who was in a similar situation said her ob-gyn took the approach of acting
    Surprised to see her at each appointment, saying things like 'wow you made it another week!'
    I suppose it's the perspective of ' give them the worst scenario and any thing else is a bonus'
    It's insensitive approach and fails to acknowledge just how much we have invested in our children practically and emotionally..
    I mean it's not like we don't think about our children's development every day anyway is it?
    In contrast, I've been very lucky with my consultant. On the last appointment on my way out the door he said to me 'leanna, when you go home later and you're thinking about how this appointment has gone, I don't want you to think 'the consultant thinks she's doing okay' I want you to think 'the consultant thinks she's doing brilliantly'
    The thing is, no one knows for sure weather she will thrive like your Joseph has, weather she will roll over, sit up or walk when she should, all we have is today and right now. I suppose some consultants get that and some don't!