Maria and I met at church on Aug 23, 1998, in Cincinnati - it was interest at first sight. We exchanged vows exactly 2 years later, and decided to share a kidney in January of 2003. Maria always wanted a herd of kids but I dragged my feet until I realized we might look a teensy bit less silly if we had the excuse of doing all our fun stuff with a kid in tow.
It took us years of working through fertility issues to finally conceive our darling boy on 7-11 of 2010. He's my little 7-11 Slurpy.
Then, about 6-7 weeks into his NICU stay, the doctor gathered us together and gave us some bad news. They found in a routine head ultrasound that Gus has PVL, periventricular leukomalacia. There's a good fact sheet on PVL here, http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/neuro/pvl.html. In brief, he has brain damage in his white matter area that controls motor function. Fortunately, there is no damage to his grey matter, the part of the brain responsible for knowledge and learning, so his IQ and intelligence should be normal, whatever normal means!
We took our guy home at the end of March still using oxygen during feeds and on a monitor so we could stimulate him when he stopped breathing. It was so wonderful to have him home with us and not an hour away in the NICU. You can see his little cord in the picture below.
After being off for a crazy long 15 weeks of work, I finally went back and learned how to balance being a mother and an employee. We made it work!
Since June we have seen OT's, PT's, ABM practitioners in Antwerp, Columbus, Cincinnati (he doesn't live here so we can only see him when he's in town visiting his parents), California, and Chicago. We've spent I don't know how many thousands of dollars on therapies and traveling - probably going on $15,000 just for 2012 and counting. The van we bought new in September is nearing 25,000 miles already in less than a year. The great news is that Gus is making improvements all the time.
He started rolling to one side in March, and to the other side a few weeks later. He started being able to use his left hand more in the past few months and sometimes is even able to grip things between his thumb and fingers, the "right" way, in that hand. He can support himself when placed in a sitting position for a short period of time, though we're still working hard to get him to where he can get himself up into sitting. He's doing some small stuff that will be pieces he'll need to put together to eventually crawl. He just turned 18 months. That's real age, for you fellow preemie moms who talk about adjusted ages all the time.
Oh, he just last month gained the ability to raise his left arm past mid-chest level where it always seemed to get stuck before. He only plays the So Big game for Grandma Carol, though.