So much has gone on since the last time I blogged. Brody has made a lot of progress but will still be coming home on extra respiratory support and hooked up to all of his equipment at all times. It's a TON of stuff to carry around to move him through the house or to take to doctor's appointments. He is scheduled to come home Tuesday and will be transported here by ambulance. Of course Cameron gets sick this week! It's hard for me when he doesn't feel well eventhough it's probably just regular baby stuff because I'm so used to him being my "healthy" kid ( a relative term with them). He usually balances out the equation. So hopefully he will feel well enough to bring Brody home into a germ-free house on Tuesday.
Staffing our nursing makes me want to rip my hair out. The thought of having people I don't know with me 24 hours a day in and out makes me want to rip my hair out. I'm anxious about them being here and having no provacy but more anxious about not having them here when my insurance knocks us down to 16 hours a day in 2 weeks. I'm sure we will be settled at that point and I will be begging for them to give us some space but it's still scary. Brody started eating by bottle again so we alternate bottle and g-tube feedings. He is so much happier since he gets his beloved bottle!
Its going to be so crazy to see Brody and Cameron together again, rediscovering eachother : ) I hope Cameron keeps his fingers out of Brody's trach! Oh how the concerns of a mother of sick preemies differs from that of most others...
Brody is 10lbs 12 oz and gaining. Hoping to see 11 lbs before he gets discharged. I'm sure Cam hasn't gained any weight being sick this week as he has been puking most of his meals and I am limiting his intake.
Cam saw the eye doctor who confirmed that everything still looks good in there and maybe glasses/contact lenses in 6 months. His vision therapist (who is one of the most wonderful, inspiring women I have ever met) is very encouraged and pleased with his progress as are Brett and I.
In conclusion...the summer leg of Cameron's World Tour 2011 is on hiatus until his brother can join the band. If you thought we were hard to get a hold of before... I have a feeling things are about to get even crazier than we have expereinced yet. Please stay patient with us... there WILL be a day when we can get out more easily, safely and freely. We miss everyone and we are counting down the minutes until Brody is healthy enough to join all of the festivities outside of the hospital/house.
In all of my free time I'm squeezing in a trip to Deep Six tomorrow night for my first (and only) tattoo. I am the last person anyone would ever think would get one but I found something I love in s discreet spot that is for my babies... I tear up just thinking about what this tattoo means for me. To brand their fight on me... to maybe experience the smallest fraction of the pain that they have endured. This has changed us all for life so I see a permanent reminder that I can wear with pride fitting.
