Thursday, February 11, 2010
The Good, The Bad and The Ugly - Sunshine and Rainbows Edition
I was just thinking yesterday, after re-reading my most recent email, that even though I try to be positive, I am always giving you all the bad and the ugly. I know I am a realist and therefore tend to not be all sunshine and rainbows, however, I feel I need to spread a little sunshine and a few rainbows. So here is the good.
Our lives with Carolena are not as horrid or scary as it may seem from our updates. C is very, very blessed to have been born in 2009. 50 years ago, C would probably have passed in her sleep and been considered a SID's death. 30 years ago the doctors were beginning to figure out the 3 step surgery offered for C. Diagnosis of these CHD's was much better and more accurate and the surgeries were having success. 15 years ago the 3 step surgeries were becoming successful enough HLHS babies who normally passed within a few days to a few moths were growing into young adults with relatively normal lives. Today, the success rate and survival rate for HLHS babies is tremendously positive. Everything from the doctors, to surgeons, to medicines, to support machines are a thousand times better. Information, research and trial and error have led to these amazing survival rates for HLHS babies. Who knows, with the way medical knowledge and technology advance C could have a fully grown and functioning heart grown from her own stem cells transplanted back into her when she needs it. The possibilities are endless. I have recently heard there will be national debate on what to do with the babies who are adults surviving with CHD's. Were are going into a new realm here and breaking ground.
C will be 6 months old Feb 19. She is laughing, smiling, talking and playing. She reaches for and pulls down toys from toy bars above her. She rolls all over the place. She still sucks on her hands and has recently found her feet. I just caught her the other day sucking on her toes. She is super fun to dress up. Having two boys I never really appreciated how fun it is to dress a baby. With C it is like having a living baby doll who is just so darn cute in all the little girly stuff.
She is a funny girl and loves to crack herself up. Every time she sees herself in a mirror she gets the biggest smile and tries to touch her face. She knows she is pretty and I think she is figuring out how to use that to her best advantage. Girls sure learn that early.
We do not do that much different than you would with a perfectly healthy new baby. Outside of the myriad doctors appointments, we would be pretty much facing the same adjustments and daily crap we would if C was perfectly healthy. Kevin and I were so darn spoiled with our boys. Even with all this, C is remarkably well adjusted. She only ever cries when there is something wrong. She is not overly upset with shots or pain. She does look to Kevin and I when we are with other people but she does not have a problem with new people. She is actually pretty fascinated with them. She literally smiles all day long (minor exception is 5pm..but I think everyone cries at 5pm...isn't that why that is the mid point of happy hour?).
Anyway, enough of my babbling. I just don't want every update I send to be about C medical condition. Yes, she still sucks at eating and a feeding tube may be in our eminent future but it is what it is. Yes, she cannot be cured at this time, but who knows what they will be able to do in 20 years.
I have attached some pics because, well I can and I just love this little girl so much and want you all to see what I see everyday. (I apologize in advance if these files are HUGE and you cannot get them to open quickly on your computer...I have no idea what the settings are on the pics coming from my blackberry).
Posted by Ashley at 1:04 PM