Dearest Tayden
Mommy is sitting writing this to you in the hope that one day you will look back, read this understand what is going to happen over the next week to 10 days and why we did what we did. This is very very hard for us and l am crying right now as l type this to you.
Firstly, let me tell you how proud we are of you my baby, you have tried so hard and done so well in your eating and drinking and mommy and daddy are SO PROUD OF YOU! Never forget that! We have watched you learn to eat and drink over the last couple of months, trying new tastes and loving your expressions as you taste something for the first time or simply look at me in amazement as I burst out laughing as you spit something out in disgust, indignantly demand MORE or simply tell me “no-no!” when l offer something.
Sunshine boy, you are an inspiration to us, you are always smiling, always happy and full of life. You have tried very hard on your own to eat and drink, which makes this even more difficult for me.
Tayden, you know how mom and dad have been upset the last time we went to Dr P and he said you haven’t grown? Well it is more than that now, you are losing weight angelboy. You are not getting enough fluids to sustain growth and Dr P spoke to us today with some really big words and medical phrases like “failure to thrive” and “stunted growth” etc. What this means, is that you are not taking in enough fluids and calories to grow as you should and you now have a medical condition which is very, very serious and has far reaching consequences if dad and l don’t do something quickly. If you don’t get enough fluid, you wont grow, your body and brain wont grow and we cant allow that.
Mom asked Dr P why you wont drink and he and Prof B have come to the conclusion that your Crycopharyngeal Inco-ordination Syndrome with Laryngeal Incompetence is still lurking – meaning it is difficult for you to swallow fluids. We thought you had outgrown it, but apparently not. So you are now protecting yourself and your airways by not drinking. Eating is not a problem for you as they are solids, but drinking is a big problem, And we need you to get enough fluid to grow properly.
Baby, the peg needs to go back in. There, mom told you. Your feeding tube needs to be reinserted in order for you to start growing again and be healthy. That means you won’t feel yucky or be in a bad mood because you are hungry or thirsty but will feel better and full. Mom and dad wont be feeding you normal food through the peg though, you will still eat as you usually do but we are going to be very sneaky and feed you fluids when you are sleeping. We don’t want you to know we are doing this, as we are very scared you will stop eating again. So, when you take your midday nap, we will feed you 250ml fluid and then again twice at night, at about 10pm you will get a Pediasure bottle and at about 3am you will get 250ml water. All this we are doing to ensure that you will grow up healthy, that you will feel better and that you will slowly start to put on weight and grow like a normal little guy your age.
Next week we will go see Prof B in Cape Town and he will put the tube back into your tummy. This is only a short term measure, for the next couple of years, until you drink enough fluid by yourself.
Know that we will be there every step of the way angelboy, you are not alone. I am sorry, l feel we have failed you, but there is no other way. We really did try everything baby.
All my love
Mom