Hi, I'm Kieran, mum to Bree DOB 21/07/10 ex 32 weeker. Bree was diagnosed with CP and GDD in January and Epilepsy in March. She also has a Hiatial Hernia and an NG tube.
We are getting surgery soon to get the button (Mic Key) and have just been advised that she will also need a fundoplication either at the same time or in the near future.
What is everyone's experience with the fundo? Bree is on the NG for supplement feeds, specifically overnight. I have read that some babies/ children who have this op will not take anything orally? I don't want to discourage the oral feeding, in fact the reason for the button is to get rid of the NG which is contributing to her oral aversion.
Also can someone please explain the deal with no burping and vomiting? Is this for life? If Bree goes binge drinking when she's older (high aspirations I know!!) will she be able to vomit when she's had too much?
Do kids get fundos if they don't have a button? I read that burping etc isn't a problem because you release the built up pressure using the button. What about if the button is removed? Ultimately this is our goal, to have her fully feeding.
So many questions I know, but wait there's more...
Regarding behaviour, how do you keep your little one happy? Bree is not a happy bub and for good reason, she can't do anything for herself. It seems like a simple question, but try googling it!
She took quite a while to smile socially and still does not laugh. Since she started having seizures she doesn't smile or goo at all (but she does make eye contact).
It would be lovely to see her smile or hear her laugh, but to be honest if I could just stop her crying all the time I would be happy.
Our problem I guess is that Bree has Spastic Quadraplegia, so when she gets upset her whole body stiffens, her head jerks back and she becomes more upset. I want to be able to make her comfortable, but everything she does is such a challenge.
I first thought "I want my little princess to be normal", now I don't care if she can't do things like other bubs, I just want her to be happy. Any advice? I don't care how strange it sounds, how alternative it is or how expensive it might be. I really will do anything to make her happier.
Anyways I'm full of questions and concerns, but I think that's enough for one post!!
Even if you don't have any answers just say something so I know I'm not alone