It has been over a week since Jonah was discharged. We are feeling a bit overwhelmed, as our expectations were for his feedings to start to normalize after his heart was fixed. He is still throwing up once or twice a day and is not taking much volume at all either. His weight gain has not taken off as expected; Jonah is basically the same weight he was prior to surgery. Actually, he’s pretty much the same weight he has been for the last two months. To put it in perspective, our 3 month old son still wears newborn sized clothes and diapers. We decided to get him checked out to see what was going on. To start we saw Jonah’s pediatric Cardiologist yesterday (Thurs 7/28). They did an echo and his heart is sealed up and working great! Great news indeed, but now we need to find out why he still isn’t eating.
Next step was an appointment with a doctor of gastroenterology, which was today. The plan laid out by this doctor and a dietician is to add formula to the breast milk which will add additional calories to each feeding. Recently we have tried using powdered formula to do this but he didn’t seem to be digesting it or he threw it back up immediately. This time we’re going to try the concentrated liquid version. In addition to this, we are also going to have an appointment with a speech therapist to see if maybe he is having feeding issues due to the low muscle tone, which most children with Down syndrome have.
Please keep Jonah in your prayers, he is at a crucial point, if this doesn’t work he’ll have some testing done (x-rays, swallow studies, etc) to see why he isn’t gaining weight. The last resort would be to surgically insert a feeding tube into his belly; hopefully it doesn’t come to that.
Bless you all! ~ D