we had our first spina bifida clinic at CHOP yesterday. zac and i expected it to be a long and frustrating day, but it wasn't too bad. justin is now 10 lbs, 12 1/2 oz, and 21 3/4 inches. the physical therapist was pretty pleased with him. urology has allowed now for us to cath him every 6 hours since his volumes have been consistently lower. everyone was pretty pleased with how strong he is, since he's already got great head control and movement.
after the spina bifida clinic, we had an appointment with neurosurgery. justin's been throwing up after he eats since tuesday night, so i brought that up to the nurse, because vomiting is a sign of needing for a shunt to be placed. i personally think it's just a bug... my maternal instinct isn't saying he needs a shunt. yet.
so, because of the vomiting, the nurse sent us for an ultrasound to see if the ventricles have increased at all on his brain. it was nice they were able to get us in while we were down there, i'd hate to have to make another trip to philly for what turned out to be nothing. the results were stable, and some images have actually improved since his last ultrasound on 6/8. we have to let her know how the vomiting has been before the weekend starts, but so far, he's already doing better. he spit up last night when we got home after a feeding and once this morning, but he's had 3 other feedings in the meantime. we've also put him back down to 2 oz, rather than the 4 he's been pretty consistent with. it seems to help.
justin has an appointment tomorrow with his pediatrician for his 1 month shots. the doctors and nurses that we spoke with yesterday also said it's worth a shot to discuss for justin to come off of the oxygen during the day. his levels are fine for a majority of the day.. he just drops down to the lower 90s when he's in a deep sleep. if they would give us the clearance to do so, i'd still carry the oxygen with us any time we left the house, but to be able to just freely pick up and go without actually worrying about all the crap we have to carry around with us when we wanna go somewhere... oh, how lovely that would be. i've got my fingers crossed!
madi is such a great big sister, and such a big help! she loves to help feed and bathe justin, and it's the cutest thing in the world to see her in BIG SISTER MODE! she is so great with him. she must tell him he's cute a fabillion times a day. i love to see the look on her face when she's taking care of him..
we have libby's 3rd birthday party to celebrate this weekend, and madi is really looking forward to spending time with the other babies (and of course, eating birthday cake). and i know myself, that i cannot wait to see the family. i miss everyone, and i can't wait for them all to meet justin.