We had Thomas’ meeting on my 30th birthday. It was bittersweet really. Needed time to digest things although I admit that I had a feeling it was coming.
The ‘feeding plan’ meeting was a discussion around the pros and cons of different kinds of feeding tubes that, according to Thomas’ paediatrician, he will highly likely need extra assistance in the ways of a feeding tube in the next 6 – 12 months. They wanted to ensure that we were aware of the different kinds of feeding tubes so that if we decide on a particular one, that some of them require a lengthy waiting time. We will need to make a decision on whether we want a Peg tube as opposed to the NG tube and if so, decide within the next few weeks so that we are on the waiting list as the Peg tube requires surgery. It is a straight forward procedure and is reversible and if in 8 months time when Thomas is next up on the list for the surgery and he does not need it, then we can say “no thanks.”
At the moment, Thomas is being carefully tracked for his weight and height and he is plotting along the graph (for corrected age) just in there but if he starts to dip down then we will need to supplement with the feeding tube so that he gets enough calories so that he can continue to grow and have energy. My job is to try and fill him up as much as I can but he doesn’t tend to eat much anyway!
As a parent, I feel it to be my responsibility to nurture my child and to need the assistance of a feeding tube to do so is such a hard decision to make because although I’m sure it is for the best, it is letting go and accepting that I can’t do it on my own. It feels like I’ve failed to provide for my child. I never thought that when my first child was 1 that I would be researching different feeding tubes. I spent my birthday feeling pretty lowly. I bounced back the next day like I always do. My husband was really supportive and my mum and dad rang and we talked. I think that it is really important to have family and friends to talk to because although they may/may not be in your shoes, they are experiencing it with you along the way.
Minding Thomas 