honestly, i struggle with the presumptuousness of blogging, but at present this seems like the easiest way to chronicle our lives/ ams condition, so here we go entering into the blogging world....
i wanted to start this last night as i think if i get behind, i will lose motivation quickly, but was too emotionally exhausted to set the whole deal up.
so... in very short form to catch everyone up who may need catching up....
we found out 33ish weeks into pregnancy that amelie had a heart defect called avsd, basically several holes through the septum in her heart, this specific defect carries a high likelyhood that she would also have down syndrome. we had an amnio to determine if she also had ds and that was positive. the cardiologist told us from the get go that am would need open heart surgery to repair the holes as they were too small to close on their own. after am was born, the took an echo of her heart and found the holes were even bigger than they had thought in utero. am spent 2 months in the NICU at swedish and while there went into massive heart failure so they put her on the max dosages they could of lasix, digoxin, and captopril. she has been a little up and down since then, but mostly the drugs have managed the condition well. optimal time frame for this surgery is generally thought to be between 4-6 months as that is old enough for the baby to grow a bit and put on some weight, but not long enough (generally) for the heart to enlarge considerably or the lungs to get terribly damaged by all the extra work/ fluid.
anyways, we set ams surgery date for this wed the 8th as d has a 2 week break from school. we are out of rsv season, and it generally worked into everyones schedules as well as being good timing for am.
about 10 days ago we went into the cardiologists office for all the pre-surgery tests and found that ams heart looked better, her vsd had closed up a bit, her murmer was considerably quieter, her heart was not as enlarged, and in general she had had a big energy spurt. the card told us she was stumped and presented the option that the surgery could possibly be significantly delayed, or am might not even need it at all. that was the last thing we had expected to hear as before she told us there was no way to avoid surgery. the card made a plan to step am down on her lasix and moniter her progress with that.
we left without asking too many questions as we were in shock and frankly, what i heard/ focused in on was that am might not have to have surgery and i was elated and wanted to just take her and run!
we stepped down the lasix and in general am responded well -- she was a little more tired, and a little more sweaty, but nothing like when she went into failure in the hospital. all the week of step down, i spent my spare time researching the pros and cons of not doing or delaying surgery and we took her back in for monitoring last thurs