The road to recovery for Brody has been a very slow slow one. It has been two weeks since we were told that he might not make it through the night and Brody is starting to feel better, look better and get back to the activities we had started with him before coming into the hospital. Our lows were similar to when we were in Michigan watching the clock waiting every second of the day to find out if Cameron would be sighted or not. But yet another lesson learned-expectations change daily. Healthy or not, our kids will suprise us and rewrite the story of how we thoought our lives would go. I can plan, plan, plan but Brody is the boss of me and is redefining how we live our lives daily. No expectations, just love and support to make them the best little boys they can be.
Brody lost a ton of weight after his infection. They were not giving him enough calories and then we stumbled across a random medication that I didnt recognize on his list of 15 per day... he was getting something for GI motility that never should have been prescribed. They put my preemie baby who is grossly underweight as it is on a diet and gave him a laxative! We dealt with that disaster and now Brody is 9lbs 12 oz. He will be in the hospital for another 3-4 weeks before they discharge him home. We don't know what level of respiratory support he will be coming home on. We're hoping he will not be ventillator dependant 24 hours a day and maybe just at night or when he's resting... we want to play!
Cam continues to be fantastic. We have been taking him on outtings more often. Yesterday we went to Rice's! Perfect mix..outdoors for the baby and shopping for mom : ) We had a great time. His visual therapy is going great and he continues to impress us with his level of progress. The retina specialist said everything still looks good with the eye anatomically. We go to the opthalmologist in July and we're counting down the minutes until we find out if he will need contacts yet. I would estimate he's probably 14 lbs but we'll see tomorrow when we go to the pediatrician.
I am officially not working... this was not part of the plan... but there is just no way that I can be all that I want to the boys and be on the road and in the OR all day. It was very hard making this decision as I have worked for the last 10 years to get to where I'm at professionally, but the kids need me. In 20 years I would not look back at this time and think "I regret not working" but I would regret not giving Brody and Cameron all of the medical, emotional and therapeutic attention they deserve. Its a short amount of my time for a lifetime of their happiness. There are many things I will miss about my job... the free company car didn't hurt either ; )
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