Friday, February 24, 2012

He's hooommmee!!!!!

Sorry I haven't updated in a while, we've been real busy traveling to and from the NICU every 2-3 hours to feed our little cutie.  Things are finally getting less hectic since we're... HOOMMEE!! YAY!  We are so excited to finally have our little guy home with us, we got a nice surprise yesterday when I went in to feed him at 12 and the nurse said he was clear to be discharged.  I swear as we were driving home I felt like I had stolen him since it felt like the NICU owned him last week.  So many rules and everything that bringing him home felt against them all.  When we we're finally free we headed out of there so fast that we forgot to have them remove the bracelets. We got a phone call before we were even in the car telling us we had to bring the bracelets back, Opps!

The night before we left the NICU we were able to meet with the neurologist about how he's doing physically and how things are with his brain. We were finally able to understand a lot of where he's at. We won't know everything for a while but we know a bit. First off the nerves in his legs seem awesome! He seems to have full feeling all the way to his ankles (and his legs are very strong!) He is bow legged and they will fix that at Shriners.  They feel that his left foot is a bit clubbed but it does look better than it did so they feel that may be a muscle issue and not a bone issue (which is great news) that means that with some OT/PT and massage plus the casts they'll do at Shriners it should be an easy fix. He also has feeling in that foot.  His right foot seems to hyper extend up in a flexed position all the time.  Also seems to be a muscle issue so another good fix.  The neuro did a prick test (pricked him with a safety pin) to see if his foot reacted and he didn't seem to think he has feeling in that foot, but Eddie and I have both seen his foot react to tickle or a prick so I think he just didn't react that time.  We're hoping he has feeling in both feet but if not it doesn't seem like it will affect his ability to walk OK.  We also discussed the Chari II Malformation. This is the whole spinal cord being pulled down thing. He does have Chari II which we kinda already knew. It also looks like the part of the brain that sends signals between the left side and the right looks thin.  We don't know what affect this will have until we start hitting milestones but children with this can have disabilities anywhere from a sight learning disability to a severe mental disability or seizures and more. There's just no way to tell.  We just have to keep an eye out for signs.  Also, as of now there is no sign of hydro. Which is great news! We'll have head ultrasounds every week just to check up too.  So for the next few weeks we have A LOT of appointments.  Neurosurgeons, Neurologists, Pediatrics, Ultrasounds, OT, and Shriners.. Good thing we live two seconds from all of those!

Things are going great, feedings are a bit difficult right now since after having a mixture of bottles and breastfeeding and formula and breast milk in the NICU he doesn't really want to breastfeed anymore.  I'm pumping but we're considering transferring over to formula since the doctors are concerned that he's not getting enough breast milk to help gain any weight. He eats about 4oz every 3 hours and I'm only pumping 2oz. He's lost a few ounces since birth which is normal but he hasn't been able to gain any back and he should be by now.

We saw the Pedi today and they think he's doing great. They are going to check him for weight when we go back for Bella's 4 yr appointment on Monday, so hopefully he's gained a bit.  I think I've covered everything, if not it'll be in the next blog.


  1. Congratulations on having the little man home! Now your family can settle in and add to the wonderful memories you are making.

  2. where do you see a neurosurgeon nearby? my 5 month old sees a neurosurgeon but we have to go to boston for it... (btw, i found this link on eddie's page)

  3. Hi lo,
    We see Dr. Shapiro at Baystate Neurosurgeons and we love him he's so amazing. We also see a Pediatric Neurologists Dr. Dredge and absolutely love him too. If you send me an email or FB message I can send you more info for them and answer any questions you have.