Sunday, February 7 started the Congenital Heart Defects Awareness week. This whole thing is kind of confusing because there is not too much under the American Heart Association having to do with CHD's. The AHA gears more toward heart disease, etc. and quite honestly there seems to be no real cohesive group to pull everything together. However, each year more children with CHD's are fighting and surviving, living well into adulthood and beyond. CHD's are no longer the consummate death sentence they used to be. There is hope. A lot of hope. And with this hope does come more awareness. There are several groups now that deal specifically with CHD's. My two favorites are:
Each of these groups provide information but also outlets for support for parents and families.
I thank God everyday that there are doctors, surgeons and researchers who believe that one day they can find a cure for CHD's. That one day they will be able to know just exactly what causes CHD's and will be able to prevent them from happening and if not prevent them know how to cure the heart once the baby is born. There is still so much research that needs to be done.
We face this everyday with Carolena. C is a special case. Her CHD's put her squarely on the most rare end of the spectrum for CHD's. Her heart will never be healed. She cannot be cured. The doctors and surgeons do not have a surgical way to rebuild/repair the part of her heart that is essentially missing. The surgeries she has already undergone and the one still to come only re-route her blood flow allowing for her heart to not work as hard and for oxygenated blood to get to all the parts of her body. As the intensivist doctor in the hospital put it...her heart is in a perpetual state of failure, the staged surgeries will allow for her heart to last longer but it will fail.
Now having depressed everyone enough...I would just like to urge you all to take a minute and check out the sites. Remember heart defects are the #1 defect in babies..approximately 1 out of 150 babies is born with one. There needs to be more funding for research.
On to updates: Carolena is still doing pretty well except for her eating. She still sucks. C has now had the swallow study, the gastric emptying study and one session of feeding therapy. She can physically swallow just fine, apparently her tummy empties just fine (we have our doubts about that one) and feeding therapy cannot really help us. Awesome. I did take her to see the GI doc again this past Friday (2/5) because she has decided that she just does not want to eat again. GI doc changed up her Prevacid and is giving her 5 days to respond. If not then he said would look to do Upper GI series and also PH probe. Still really hoping she turns it around on her own soon. On the bright side she does actually like baby food..her favs include apples, pears, sweet potatoes and carrots. Catch the trend here...she loves the sweet stuff! She has also tried peas, green beans and bananas. The only thing she has absolutely just sit out has been bananas. Weird, right? Well, it looks like the banana stash will be safe for big bro Todd (who by the way could be a monkey with all the bananas he eats).
C is really incredible otherwise (and almost 6 months old). She is a happy little thing. Smiles first thing in the morning. Selfishly I like to be the first one she sees because I love her smiles. She is extremely vocal. Just talks and talks. Pretty funny actually. She is rolling all over the place and is still wanting to sit up. She has to do everything the hard way of course. She could probably get to sitting if she just rolled from her side and up but she refuses to do that and is convinced she can go straight to sitting from a reclining position. Silly girl. She is amazingly strong and loves to be on schedule. She sleeps well and her heart and lung function are great. Her oxygen levels are still really high and she rarely looks blue. We are starting to take her out a little more now but still being very careful to not let anyone touch her or hold her. She LOVES her brothers and gets really upset when they leave her alone. She particularly adores Todd. Probably because he tries really hard to entertain her and make her laugh. Her hair is remaining dark, even though it has lightened up a lot I do not think she will be a blonde like her bros...however, her eyes are still blue. Go figure.
Thank you all again for continuing on this journey with us. My family is so blessed by all the prayers, well wishes and good karma being said for us. Hope everyone is doing well.