The biggest issue that I had to face in the US was the question of tube feeding. I was expecting the subject to be brought up but despite this expectation, it still hit me in the pit of the stomach when Dr Parikh and his colleagues recommended that Talia be nocturnally tube fed via a g-tube. To be honest the thought of feeding her this way makes me feel a little ill. But why am I so against it?? To be honest, for months when Talia was 4, 6, 8 months, I asked for it, I suggested it, I wanted it. But at the time, Talia was feeding badly due to her low tone and inability to suck an swallow. However, now, my darling baby loves her food, relishes it even. From crisps to avocado, mealtimes - yes they take long, but they are well worth it. So I have many reservations as it has taken me a long time to get her to learn to chew and swallow. My husband was really tough on her refusing to feed unless she opened her mouth and now she cando it beautifully. She eats an average of 1000 kcals a day and that of a two year old should be 1200 but remember she is the weight of a 2 month old!! Wont feeding at night make her lose her appetite in the day???? WHAT ABOUT HER MUSCLES? Feeding is a great way to exercise the mouth muscles - will she get lazy??? BUT worst of all for me is the thought of putting her under a general anaesthetic to carry out the procedure. Tália is extremely sensitive to it and I feel it is a very big risk.
On the other hand, I have to look at pros, look at cases. The nutritionist in the States said that the procedure was very simple. They agreed to support me from abroad - answer any questions etc. They really were so giving and warm and happy to let me ask as many questions as I wanted.
Could my closed minded approach be bad for Tali? I realize that I need to consider this option carefully and need to study it. In order to do so, I have contacted the gastro dr here in Malaga and after chatting about it we have decided to give Talia until October/November to make a deision. The procedure here is pretty much the same but the doctors think I should work a bit more with the diet side of things prior to making a decision. Also in August we are attending a Walkng with Giants Conference. Many children attending will be tube fed. It will be good to get some first hand advice and opinions from parents and kids.
Just now I am gong to do everything in my power to build up Tali's strength and weight. I know that when the time is right, I willl know what decision to take. As Talia loves swimming, I had already decided not to do anything over the Summer. Our lives are here to enjoy, to make the most of. I want her to enjoy the beach and pool. She is such a happy go lucky and happiness is key.
1 comment:
I have a daughter that is fed through a G-tube at night and eats orally during the day. She was tube fed exclusively for more then 3 years and it took us time to get her muscles strong enough to eat more then a few bite but now she eats enough that we have been able to reduce her tube feedings. I think you can find a wonderful balance bewteen the two.
Good luck to you and your adorable little lady!
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