Monday 10 September 2012

Wait and See - Don't Write My Baby Off Just Yet

For a while now I've been thinking about a post about doctors and very premature babies in the NICU, and then discovered to my delight the gorgeous and talented Jessi at Life with Jack had got there first. I love it when that happens! I wanted to add my thoughts.

Dear doctor, my baby is 2 weeks old. You have just told me he will never eat or drink and be tube fed for life. I am scared. You see, I have worked with children and adults with special needs, and I have assisted with feeds before, and I don't want that for my son. Please, don't write him off just yet, let's just wait and see.

Dear doctor, my son is 3 years old. I am constantly trying to find ways to eat his broccoli, to try some peas, to eat something other than fish fingers, cakes and ice cream. He spills his drinks everywhere, leaves half eaten apples in parts of my house I never knew existed, and throws a tantrum if his banana breaks whilst he's eating it. But it's far preferable than being fed by a tube.

Dear doctor, my baby is 4 weeks old. I know, the pooing is an issue. He's not pooing regularly enough, he gets bloated. But really? Do you really think he'll need a colostomy bag? You see I've looked after people with colostomy bags. It's not the end of the world, I know, but they split, they don't like being hit with footballs, finding the right device and adhesive is such a pain. Can we just wait and see?

Dear doctor, we've been potty training for 8 weeks now. Joseph loves his potty and his toilet, he has a funky toilet seat, he's great. He wees at pre school, he loves to get "caught short" so he can wee on the grass. But won't poo on a potty or toilet. He prefers the carpet, if I'm really lucky the laminate, or if I am really really lucky the grass outside. But it's far preferable than a colostomy.

Dear doctor, I know Joseph has taken a while to get off CPAP, I know his breathing is an issue and he desaturates at night, but really can you tell at 6 weeks old that he'll need oxygen at home? I know its not the end of the world, it means having a cylinder in the house, and a transport one for out and about, I know we will manage, but can we just give him a chance?

Dear doctor, my son won't stop singing and shouting, he blows candles out in church, and other kids birthday cake candles. He is full of hot air (some would say like his mother). But I wouldn't change it for a minute.  

Dear doctor, yes I know Joseph is 18 months corrected now, and really should be walking. I know you are worried, but honestly he's just on tip toes because he wants to reach your sink, and your chairs are too high. My son comes from a long line of late walking, really, don't call it cerebral palsy yet, it's far too soon, give him until he is 2 then you can worry, please?

Dear doctor, I am very concerned as my son runs faster than I ever can, in the supermarket, on to roads, dangerously near rivers. He is never still. He climbs up walls, on to window ledges, over fences. He is racing about everywhere, and I need eyes in the back of my head. But it is far preferable than him being in callipers or a wheelchair.

Whilst this is somewhat tongue in cheek, my point is this. All of the above was said to us. It was said in a factual way never with a "in my opinion" or "in my experience". Opinion is important in medicine, of course it is, but it needs to be put as that to parents. In our case the doctors treating Joseph had not had a large amount of experience with 27 week gestation babies. I had enough medical background to ask the right questions "on what are you basing this?", "what are the chances of Joseph needing PEG feeding/home oxygen/ a colostomy bag?"

When we have a premature baby we are thrust into an alien world of machines, staff, terminology and opinion. It's hard to navigate through all that, and keep positive.

Our primary job as NICU parents  is to believe in our babies, even when things are looking less than bright. Babies are amazing resilient little creatures, and sometimes doctors can forget that.

Believe in your baby. 


  1. lovely post and tears in my eyes thinking how proud you must be of Joseph and how far you have come. Never underestimate the human ability to fight and sounds like Joseph fought for a better life for himself!
    Good luck with the potty training too - sounds like you have your hands full!

    1. I have a 25 week prem baby now a corrected age of 6 days he is home of oxygen and feeding well but he poops every 4 or 5 days .. Nicu could never tell me an answers so I just had to think with my heart that things would go our way my thoughts are never give up we do things in our own time not when we are told which should be the same with babies ju

  2. Wow a lot of negative comments and Joseph proved them all wrong!

  3. Loved this post! There are times when I'm disciplining my typical needs 3 year old and I think, When my 24 weeker is doing these "naughty" things, will I remember what a miracle it is that he's able? I have to give our doctors credits, they never, ever speculated on the future (out loud), but when they see him at 16 months old they are truly pleased and maybe a little surprised by how well he's doing. There is no such thing as a wimpy preemie and they never give up that will to fight.

  4. Love your take on this, Kylie!!