Getting Lyra to grow has been a tough process. The problem has always been being able to feed her enough calories, and getting her to keep them down. I like to think of her daily feeding like baking a complex dessert. It takes timing, attention to details, and a bit of luck. Some days things go really way and you end up with a beautiful souffle at the end of the day. Some days you burn the milk, kill the yeast, and forget the vanilla. Other days you think you did everything right and you end up with bubbling yuck on the bottom of your oven.
Lyra is fed 21 hours a day. She likes eating solids, but only at certain times, and she will only take 3-4 bits. She has been into her bottle recently as well, but we really have to limit how much she will take at a time. Her stomach does not empty at a normal rate, hence why she gets a slow drip throughout the whole day. Even with that slow drip, her stomach becomes overwhelmed and she starts to throw everything up, quickly landing us back in the hospital.
Recently Lyra has not been growing. She has totally fallen off the charts for her height and we have not been able to increase her formula intake enough. She just can’t tolerate more in her stomach. This means we are heading back into the hospital for a new type of tube. This one is called a GJ tube. It has two ports: the G port feeds right into her stomach (like her current tube), the J port bipasses the stomach and goes into her small intestine. The hope is that we will be able to alternate using the G and J ports so her stomach will get a sufficient amount of rest. This may mean that she is able to tolerate more by mouth!
She basically has not grown in 4 months and this is our best bet. I am trying not to be too discouraged about having to put her back under. I know this is what is best for her, but it is never easy to put my infant under anesthesia. Hopefully after all of this she will finally fully outgrow her 3-6 month clothes!