Inching Closer

Lily's next cardiology appointment will be at the main campus of the Cleveland Clinic. We will consult with doctors there as we get closer to the time of her surgery. The doctor and nurse were blown away by her good condition yesterday. They said that she is doing great and that she will be a different kid after her heart defect is corrected. Kim and I are both nervous and excited to get this major hurdle behind us. Lily's feedings have and continue to be a pretty significant challenge.

Tired

Things are still slow-going with Lily. After having a great week gaining weight, she only gained 2 oz. last week. This means we won't be trying to get her to sleep through the entire night anytime soon. We have also decided that Kim is going to attempt and return to work this fall. She tossed around the idea of tutoring from home but we just don't see how we can work it out without paying for a sitter.

The reality hit us when we got a bill from the hospital for nearly $50,000 for Lily's NICU stay. This is the bill that will be submitted to the insurance company and it will be reduced since the Cleveland Clinic is an "in-network provider". With all of the digging, however, I just can't figure out how much we will owe of this. All that we know is that the social working at the hospital just kept telling us to brace for large medical expenses.

I'm sure many acquaintances and family members will be judgmental with this decision. My thought is that if you aren't willing to help or give constructive criticism, keep your opinions to yourself. This is a very difficult time on so many levels and I am tired of hearing the "encouragement" from the clueless with religious anecdotes, etc.

I find it interesting how people view an event like this as "faith strengthening". It has definitely strengthened my belief that if there is some kind of God or greater power out there in the universe, it is nothing more than the spark of creation and has nothing to do with how our lives play out here on Earth. After all, the same Bible existed 100 years ago when Down Syndrome babies were institutionalized with no chance of a semi-normal life. It is modern science that has given us hope.

Gaining Weight!

Lily had an appointment at the pediatrician's office yesterday and she had gained 7 oz! This is 1 oz per day since her last appointment and the doctor was very impressed with her progress. She also commented that her muscle tone seemed a bit better. She continues to have periods of COLIC during the day but sleeps through most of the night with only one feeding.

The nurse that had been visiting Lily commented that she does not seem as problematic as some of the other Down Syndrome children she has seen. One little boy needed heart surgery immediately after birth.

Switching Formulas

Lily had her best day yet yesterday. After not gaining any new weight since she has come home and some overall crankiness, we switched her to a soy-based formula. So far this seems to have done the trick since Lily has been getting a lot more sleep in between feedings. She has another appointment with the pediatrician next Monday to check on her weight. At least she is finally starting to slip into a routine.

Cycling to Work

I finally got my act together and have rode the 2-2.5 mile commute to work on my bike the past 2 days. Cool morning temperatures and a short ride don't really require much in the way of gear so my backpack remains fairly light. In fact since I do a majority of it on the sidewalk, I even forgo the helmet. I'll have to see how long I can keep up the riding but so far it's no big deal. I can make it to and from the office in about 15 minutes and I figure I save about $1 in gas each day.

Ideally, I'd love to do this as much as I can. The trip is so short, I could do it well into the cold fall.