Kevin has made great progress in the last week. His NG tube hasn’t been in since last week when we took it out, and he’s eating like a champ. It’s so much easier and more convenient to feed him without the tube. He eats quickly and takes his full feeds with no problems now. Based on his weight at the last visit, they upped the volume of food that he should be getting in a day and he’s taking that much fine. He’s on straight high-calorie formula now and we don’t even need to mix it with rice to thicken it up.
The nurse came today and weighed him, and he was up to 4.03kg! That’s 8 pounds 14 ounces - almost a full pound gained since last week. We’re so happy that he’s gaining so well now. He still has a long way to go to “catch up” to his ideal weight at this age. He’s almost 10 weeks old now!
He continues to be a very content and happy baby. He’s always skeptical of things, and has that look on his face like “what do you think you’re going to do to me?” He’s sleeping well at night, too. We usually let him sleep about 4-5 hours between feeds at night, but then wake him up to eat. It’s a lot better than every 3 hours and dealing with the NG tube!
We see the cardiologist again on tuesday to check on how things are going after coming off the one medicine and to look at his chest x-ray. He then needs more labwork done the following week to make sure that he didn’t aquire any illnesses during all his blood transfusions in the hospital. On the 30th, we’re back to Iowa City to check in with the ear, nose, and throat doctors to check on his swallowing. Seems like a lot, but really it’s just a lot of checking in on him to make sure everything continues to go well.
Overall, things are steadily improving and life is starting to get back to normal. It almost feels like we have a ‘normal’ baby with no health problems now! But we always know in the back of our minds that he is a special case and we need to always watch him very carefully.