After almost bi weekly cardiology visits and someone with a medical degree looking at Jasiu and evaluating his health constantly, I think I will almost feel doctor withdrawal. I know, I know.. They all say I did great so far with watching him and knowing when something is wrong, but we were lucky and nothing was really wrong yet, so now I'm a little freaked out that I may miss something in the span of 3 months. However, that feeling, I'm told by more experienced heart moms, will never really go away...
Stats from our clinic today ...
- Weight 7.055 kilos (15lbs 8 oz) (5-10%)
- Height 26.5 inches (25-50%)
- Blood pressure 105/61 (right leg), 107/56 (left leg) - good
- Heart function - good
- Valve leaking - minimal
- Things to watch- narrowing aorta due to possible scaring from Norwood surgery
Heart because he had the higher blood pressure last time on both external reading and echo and there was already some thickening of the heart muscle due to this. Jasiu got Enalapril twice daily and it's helping. Heart function is good and the heart muscle is getting much better as well. Because he gained weight from last time his Enalapril was increased to 0.4ml twice daily. This is really a minimal amount of the medicine and by the time he realizes I squirted it in his mouth, he already swallowed, however he does know it's coming because he just sometimes sees me holding a syringe and already starts squirming.
Weight - by looking at his numbers and the growth chart, one would think Jasiu looks like a string bean, long and skinny, however in reality, he looks like quite the chunker. This surprised both Dr. H and Asha, our nutritionist. Since his last appointment Jasiu has been NG free, and his eating volume and habits have not changed. he still takes in about 20-24 ounces of fortified breast milk over the course of 24 hours. Theoretically based on his weight and now activity level, this is almost the bare minimum to sustain him, however he IS growing and putting on weight. He put on a little over a pound in one month, so for a cardiac kid, that is pretty good. The nutritionist was also surprised by the way he looked and said though she's surprised, she has a few kiddos who just don't need that much and still do good and they said he looks "great" so that is music to my ears. I think I have to stop looking at that stupid growth chart and stop comparing him to other kids. She said we would not recommend pouting anything extra into Jasiu's milk, like oil or additional calorie boosters and just continue to do what we are doing and try to encourage more volume. So we left the cardiologist office quite happy.
Next was the paediatrician's office for our 6 month check up and vaccines. Now our doctor is a great pediatrician and very well respected in her field, however I'm hearing conflicting messages from the clinic versus her.... She was surprised and discouraged me from giving Jasiu solids or baby food puree's yet as well as putting rice cereal in Jasiu's milk. She said there is more nutrition and calories per ounce in breast milk or formula than in an ounce ob baby food and that he has plenty of time for that food. HOWEVER, I'm of a different opinion. I think he's fine to experiment since he likes it. There is no way to get more milk into him, we try almost around the clock to feed him and he just won't take any more and there is no way we can force him to eat besides the NG and we're NOT going that route. He is doing well otherwise and received his 6 month vaccines. Another thing she wants Jasiu to try is sleeping through the night and I should let him. Currently we would feed him every 3-4 hours during the day and at night (midnight feeding and 4 am feeding) . She wants us to stop that and see what time he wakes up. But i think he won't reach his goal for the day and may end up losing weight. So she wants us to try letting him sleep and see us in 6 weeks for follow up. So we will actually have another pediatrician earlier than cardiology.. WOW...
Jsiu, even after a full day at doctor's visits and then going to Wal-Mart with me and Emilka (for the first time) together was in good spirits. That's my boy :) I on the other hand was tired and am hoping we don't have to see any doctors until our scheduled appointments.
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