10-19-10 8pm

So not to get philosophical or anything, but there is no up without down and there is no down without up. I wish we just had a couple of days of even keel. After yesterday's bad news, today was filled with what I will call hopeful.

1) The daycare we were going to use for Riley seems ok with her heart issue and with her having a G Tube for feeding - so that helps our piece of mind immensely.

2) The bigger news is that one of the pediatric doctors that has been seeing Riley called a child surgeon specialist at Egelston hospital where Riley's heart surgery is going to be regarding the G Tube and our GI doctor meeting yesterday. The surgeon over there felt that he could do the G Tube insertion on someone Riley's size and age. The cardiologist came by and explained that Egelston is used to children's surgeries so that is why they can do surgeries that other places can't. So the surgeon is looking into OR time for the beginning of next week!!!! This means that they may be able to do the G Tube and tighten up the upper valve in her stomach so she won't have her reflux problem.

3) She has moved up to 14ml/hr of 30 calorie food and she is getting 2 lasik doses a day to make sure that we keep all of the potential fluid out of her chest cavity. Believe it or not this in preparation for her heart surgery in 4-6 months. At least they are thinking long term.

I wish that I could say that I am over the moon about this, but I fully expect to walk in tomorrow and they tell me that my daughter has grown a third leg or something and we have to wait to have all her surgeries until the foot on that leg is done growing toenails or something.

Michele is feeling much much better this afternoon and has reached out to some people for help in dealing with this. This makes me feel better as I was afraid that I was losing my wife to an abyss that she couldn't come back from and Zoey, Riley and I need her desperately, now and forever. Michele and I both also feel better because it seems that Riley has a little bit of a longer term plan going finally:

1 - G Tube insertion and upper stomach valve tightening surgery and recovery
2 - Come home grow bigger and eventually go to day care, lots of doctor visits, and get some preventative shots
3 - Open heart surgery to repair her VSD (moderate hole between her lower ventricles - remember, the crapy thing that started all of this) and recovery
4 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey
5 - Get surgery to fix my swallow problem and recovery
6 - Come home and go to day care, lots of doctor visits, grow bigger, enjoy my family immensely, make my family smile a lot, learn lots of stuff from my big sister Zoey and live as much of a wonderful life as I can

I'm 100% positive that it will not go that exact way, but we are getting better every day at trying to deal with the completely topsy turvy world of 22q deletion syndrome. I'm not going to sit here and tell anyone that my newest daughter is any more special then anyone else's child is to them - because she isn't. But what I can tell you is that my little flower is just going to need special gardening techniques to grow into the person she is going to be. I just hope that I can have the best green thumb possible.

As always - thank you for the absolute torrent of support, love, and thoughts that we have received. Michele and I knew that we had wonderful friends and family before this, but the notes/cards/emails that we have received have overwhelmed us. If we could turn every one of these in for credit at the front desk of the hospital - Northside would be able to fix every baby in the NICU for 5 years.