Monday, April 8, 2013

Updates - long over due!

Life has been a blur lately - so sorry for not keeping this updated.

Callie just had her second surgery for her skull. This was a planned surgery. We thought she may need a third surgery, but the doctor told us not in the near future (this being the next year). What a relief. So for those I have not kept in the loop very well. Callie was diagnosed with Craniosynostosis last summer. This means the skull is not growing, but her brain is. We got a second option at Gillette Children's in MN and feel in love with the doctors, nurses and everyone involved. We were told she would also need neck surgery at the time as she had similarities to Zak's neck. In October we did the first surgery on the neck and back of the head. They removed a little piece of bone in her neck as it was compressing the spinal cord. Then they took the back part of the skull and pulled it back to make more room. The surgery went great but she had a few infections she ended up having to fight. We noticed a lot of changes with her first skull surgery as far as movement and relief.Next was the heart,we always knew she was a candidate for heart surgery as well and since she was finally big enough and would be having more surgery and sedation it was just time to get it done. She still had the hole in her heart that some babies are born with. That would need to be closed. Also, her pulmonary valve needed a little work. We had that surgery in January at Marshfield clinic, but with the Milwaukee doctors. Since we knew about the previous infection we took extra precautions with surgery and she came out great! I think the hardest part was not to rough house with her as they did open heart surgery which means they had to break the sternum. We had to wait for that to heal. The whole time we knew she would also need this skull surgery, but needed to wait for all the heart surgery to clear. This surgery went well. She had a lot of swelling which was very expected. Now time will tell as she heals. It is fun to see the swelling reduce and see what her new forehead looks like!

Zak has been doing good, although he continues to bang his head all the time. While Callie was in the clinic this time we had a monitor put in Zaks skull to monitor his pressures. This was a Teeters' first. Both kids in the hospital at the same time! We don't need to do it anytime soon, although it did go well since the staff here is so helpful! His pressures were slightly elevated so he is on a new medication for a few weeks to see if we notice any changes. We will come back for follow ups at the end of April and have a better plan then.