>> Tuesday, July 7, 2009
Kamryn had another good day which makes 3 days in a row and we are cautiously celebrating. It really is good news. I wasn't sure how good it was going to be after talking with the hospital this morning. They adjusted her pressure down from 24 to 23 around 2:00am and the gas at 4:00am showed her CO2 at 70. At 70 and over, they assess whether to raise the settings or not. They decided to let it ride and made another change at 2:30pm on her rate from 50 to 49. Her gas at 4:20 showed her CO2 at 66 which is great news. For now she is tolerating less assistance. It's important to understand these are very small moves on vent settings, but they are still wins and we are so proud of her! I am not sure what the plan is before the next gas at 4:00am, but hope she can keep up with any changes they make overnight.
We still feel so frustrated with the overall progress. We think it has to do with all the predictors I researched before delivery. I was aware going in that we weren't in great shape, but I really felt like we were in pretty good shape. We had an LHR of 1.4 at 26 weeks, 2.0 at 29 weeks, and then LHR's of over 3.0 after 32 weeks (an LHR over 1.4 has been used as a predictor of a good outcome in numerous studies). I know LHR is a predictor of mortality, not necessarily a predictor of days on vent or hospital stay, but having such great LHR measurements really made us feel like we would make good progress quickly. Unfortunately, I didn't rely on what I now believe is a much more important factor to hospital stay which is the total lung volume and then comparing that to a "normal" baby's lungs. When we did that at 34 weeks, Kamryn only had 25% total volume compared to her twin sister Brooke. While the LHR was fantastic, it only measures the one "good" lung on one dimension. When measured 3 dimensionally, there really wasn't much total volume there. I think that is what is now causing her so many problems.
It's hard not to look for some type of comparison to gauge where you are at. The doctors aren't able to even give me a "gut" feeling on where she is headed with all their knowledge and experience. It's hard to prepare your mind and emotions sometimes when you don't see the people who know this better than you showing much optimism or pessimism. It's just a constant, "we don't know". My brain tells me not to, but even now I find myself looking at studies that show total lung volume to the mortality rate and hospital length of stay. In the most recent study, all babies survived with 15% or more total predicted lung volume and Kamryn had 25%. If I look at the graph for hospital stay compared to lung volume and map it out to her 25% volume, she falls at 53 days in the hospital (small study with 14 baby's - hardly enough to draw conclusions). It's been 21 and at the rate we are going, I see us here much longer than 53 total days. You just want to grab onto something, anything, that will give you a sense of where you might be heading, good or bad. It's frustrating not knowing if you should allow your hopes to get up or brace for a negative outcome. You honestly feel simply lost most of the day. We know we should only focus on today as we can't change yesterday, nor should we try and anticipate tomorrow. Our heads know what we should focus on, just try telling that to your heart and stomach. So many percentages and unknowns with this defect and I know in my mind that none of them really matter. We know in the end there is no middle ground and we will have only one of two numbers to hold on to, 0% or 100%, but you honestly try to find some direction anywhere you can along the way.
On a happier note, we are now able to see Kamryn's scar from surgery and it wasn't as bad as I thought it would be. Maybe a little longer, but it's a very thin line. Looks like it will heal very well. Here's a picture from today.
Here's Brooke who is growing like a weed and is 9 pounds already! This is what she does most of the day :)
I look forward to posting more good news tomorrow. I'm forcing myself to stay hopeful and optimistic and still believe she can beat this even though I don't feel that same sense from others. Like our daughter Hollie says, we don't quit in this family.
Have a great evening everyone,