It feels so good to be "talking" to the outside world again! Jonah has been home for 3 and 1/2 weeks now and as Rob described in the last post we were faced with many challenges right away which were so much more mentally and emotionally taxing than I ever expected.
From a cardiac standpoint, Jonah goes to clinic every Friday where the doctor and nurse specialize in seeing children who are recovering from their 3 step surgeries, specifically the Norwood. Once every month the team performs and EKG (to check heart rhythm) and an Echocardiogram (which looks at heart function)...Jonah had these done last week. His shunt and the aortic arch (where Dr. Ilbawi placed a bovine patch) look really good and are in optimal working order. We could not feel more pleased about his healing progress. God is so good!
From a GI/feeding standpoint, Jonah is also making some progress. He is doing so in small baby steps but we now understand what is par for the course and we are trying not to let our own expectations get the best of us...I should say, I am trying not to do that :) We came home giving Jonah bolus feeds through his NG which mimic a normal feeding pattern for most newborns; which is eating every 2-3 hours. These were so difficult in more ways than one. First, Jonah was growing intolerant of the feeds. Throwing up, diarrhea, abdominal cramping, etc. Second, the repetition felt like we were living the movie of Groundhog Day and we never seemed to be meeting any goals. Jonah was taken off Reglan-one step forward, and put on continuous feeds-one step backward....sort of. The continuous feeds are given through a pump that infuses the milk 24/7. It has been such a gift to get some sleep again!! For Jonah especially. He has really done well with this since he is now gaining weight and BM's look better. He is a whopping 8lbs 12.5oz. This slow and steady gain is typical for these kids since by the nature of their heart defect they are already burning more calories and the crying fits that Jonah had for 2 weeks didn't help in that regard either. I said one step back because while Jonah is on the continuous feeds he never feels hungry. If he doesn't naturally feel the need to eat, it can mean learning to bottle feed might be more difficult. Not hungry? Why try? But we are very happy to announce that Jonah took his first 5ml (basically 1tsp.) by bottle last night!!! It took Rob an hour to accomplish this with Jonah, but they did it! Rob really has the patience of a saint and that is why he is just the man for the job. I have to admit, patience is not a virtue of mine. Rob was the first to get Jonah to take the pacifier also...again proving not only to be the best dad but also my most amazing counterpart!!
I have been so easily frustrated with these very basic baby skills. I mention expectations because I have such a bad habit of putting the pressure on that I am afraid I have projected that on to our little buddy. I kept thinking practice makes perfect and we need to carve out bottle-time during the day as much as we can. I was looking down and thinking, "Why is this natural instinct so easily lost and so hard to get back"? I, of course, was NOT helping the situation. I have slowly come to accept that Jonah will get this in his own time. They keep telling us it is like the switch of a light bulb, one day it will just turn on. So with that as a constant reminder and Rob's patient persistence, I know this too shall pass. Jonah will be eating like a big boy in no time!! As we wait, we are enjoying a little more sleep and a much happier baby. How can I argue with that? Yup, God is good.