We took Jasmine to the park today and put her on a swing. It was funny as it took ages to coax a smile out of her. She was completely unfazed by the fact that she was swinging through the air, and sat there looking really underwhelmed wondering, why we were so excited. After a while when she had leant over to her left and found a comfy position, she relaxed and began to smile.
Her vomiting has been really good – a lot less than usual – and under control for about a week, and then two days ago, she had a big vomit and threw up her NG tube. I left it out, initially for an hour or so, but she managed some porridge and then some milk (out of the doidy cup) and then at lunchtime some spinach, parsnip and basil puree and then more milk. Two days later, she is drinking away without her NG. We will leave it out again until she needs it and for now, we will give her nose a rest, and us! Preparing and carrying about giving sets of milk, 20mls syringes for aspirating, flushes for cleaning her tube, the back pack and food pump is a big commitment.
The only thing that is slightly stressful without the tube, is giving her 4mls of sytron (sodium feredate – iron) everyday. We have tried mixing it with milk or with water, but she won’t drink it, or if she is caught out will vomit violently everywhere. We have tried mixing it in food, again a big no-no. We have tried just putting it in her mouth, but she spits it out. So, now we give her a sip of glucose water and then chase it up with a quick squirt of sytron and the another sip of water and another squirt of sytron and so on until she finishes it or gets fed up, and then we give her a rest and do some more later on. It seems to work.
It is well known on the ward that sytron causes all the babies to vomit, I don’t know why, it is cherry flavoured and tastes really nice.
It is wretched tasting, it has a metallic after taste, someone told me to try giving it, than put in a spoonful of applesauce to add a sweet taste afterwards(I’m pretty sure this is a quick way to make them hate applesauce) we tried every flavor as well to mix with it, its just plain nasty…congrats on going tubeless, does Jasmine get night feeds? Is that her only med? Glad to see that she is having fun…or kinda having fun although she needs a lot to impress her (: