You had a VERY LONG appointment today. It's through the "NICU Follow-Up Program." We met with a pediatrician, neurologist, physical therapist, nutritionist, audiologist, and social worker. I think that was all! We were there from 8:30 am until 1:00 pm.
Pediatrician - She sees nothing to be concerned about. A little tight, but overall, really good!
Neurologist - Thinks you're doing great! No real signs of your brain bleed. Wants your birthmark on your face checked because if a certain type of birthmark, it can mean there is something wrong in your brain. So, we will be going to a dermatologist to have that checked out. You reached for things and followed things well. You didn't cross reach, which is good, because sometimes those with brain bleeds will sometimes reach across to grad instead of using the closest.
Physical Therapist - Thinks she sees a slight favoring of your right side (common when you have a brain bleed on your right side). Nothing she's concerned about, but said we need to watch it. She thinks you might have an issue with your hip, but when she looked at you the test wasn't consistent so she isn't quite sure. So, we will be getting an ultrasound or xray of your hip to see if it tells us you're good or if there are problems. She gave us a few exercises to do with you after changing your diaper each time. She said you're a little stiff when we hold you up, meaning you don't just relax and let your legs bend, you stand. Also having to watch your ankles to make sure they are moving smoothly, and to watch your arms to make sure you're holding them both in instead of out. At one point while we were there, your right was in and relaxed, and your left was just hanging out wide so she said if we notice that to pull it back in. You followed, reached for, and played with things well. She also said to try our best to get you to have two 45 minute naps a day instead of all the little ones you take because your body doesn't release a growth hormone until you are asleep for that long!
Nutritionist - Said to aim towards 24 oz of formula a day (not 32 ounces like our doctor said) and eating cereal/baby foods twice a day (instead of 3 like our doctor said). She said the reason for this is you are considered a 4 month old, not a 7 month old. She's very happy with how you're doing. She said feedings is all about when you want it and how much you want and not to try to force you to eat. She's very happy with your habits, though. She said it's not a surprise that you don't get too fussy anymore when you want to eat. She said that is common for NICU babies. Sometimes it's extremely hard to find cues in NICU babies so if you haven't ate in 4 hours, to go ahead and try feeding you.
Audiologist - Hearing is still flat. Wants to see you in 3-4 months. Thinks having tubes in your ears will be a great thing if they don't drain in their own. Happy that the bones/nerves are fine and that there is no hearing loss in our family.
Social Worker - Happy that you're being taken care of and reminded me to plan things to look forward to each week and to interact with other adults. I'm already doing my best at that so we're both great!
Overall, great appointment. It was nice to have more eyes to check out how you're doing. Everyone thinks you're progressing very well. Physical therapist was even surprised that you were reaching for and holding toys already! We will go back again at your corrected age of 9 mo, 18 mo, and 2.5 years unless requested to come at other times.
It was also interesting to see all the other little ones there for their NICU follow-up. You could tell many had issues worse than yours and others that it didn't seem to affect too much. It also made me realize how lucky we are to have such a health baby boy. So proud of you! You're a fighter!
