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Thursday, December 29, 2011

I was born just over three months ago, the smallest of our three babies, despite the fact that she was predicted to be much larger--her estimated weight at 35 weeks was just a few ounces shy of what she was when born at the end of week 38. The MFM clinic where I went to see the perinatologist had a pretty accurate record for weight measurements so it was surprising. But at 19 inches and seven pounds eight ounces, she was tiny and adorable and wonderful :)

we enjoyed twenty-four whole hours with her before they told us she had a heart murmur, one that was pronounced enough that they wanted her to have an EKG and an Echocardiogram and see a cardiologist before we even left the hosptial :\ They ordered the tests to be done on Saturday and said we'd see cardio on Monday since it was a weekend--I must admit, it scared me a bit when a nurse told us to expect cardio on Sunday. They sent over her tests and cardio said they were coming to examine her right away. eep.

She had a large VSD and a medium ASD, holes between the chambers of the heart. As she got older, oxygenated blood would flow through the hole and back into the other side of the heart instead of going out to feed the body. Her first month was pretty good--she gained two pounds, she was as alert as any other baby her age, she loved to nurse. But when we had her followup with cardio, her holes had not closed at all :( So it was back to waiting to see what her two month birthday would bring.

That second month saw her sleeping more and beginning to breathe harder. There was a hitch in her breath and it didn't come as easily. Her next cardio visit when she was two months saw her start medications--her heart and lungs were working overtime trying to compensate and her heart would race and her breathing become shallow and fast. The medication would flush out some of the excess fluid building up in and around her heart and lungs so she could breathe more normally. And we saw a big difference fairly quickly--she was more alert, she played more, she was happier. But she still slept more than my other two did at that age and that little hitch in her breath would come back when she had been up and playing for too long.

The first two months, when life was basically business as usual, it was easy to let her condition slip from my mind. She looked and acted like a normal baby. But fixing her syringes of medicine twice a day and having to watch for the list of symptoms that mean she has to be rushed to hospital are a constant reminder that she is not like every other baby. On an emotional level, it is hard not to spend large amounts of time wondering "what did I do?" I am told that the majority of heart defects have no known cause. I am not supposed to think it is anything I did or did not do to cause them. But its hard not to wonder--after all, I grew her inside me for all those months. She depended on me to make everything right for her and somewhere along the way, something, no one knows what, went wrong and that little heart didn't form all the way. But despite its problems, it sure does have a lot of love to pour out on me and her Daddy and her brothers. That smile of joy when she sees us goes a long way to ease the fears and worry :)

Wednesday, December 28, 2011

I have not been here in a long time.....

Life happens and this particular blog fell by the wayside. I kept meaning to come back and update but time just got away from me. I briefly thought about deleting what was here and starting over since I would like to use this space to focus on working through everything going on with my daughter but decided not to. Even though there isn't much here, it is nice to remember that once upon a time, life was not an endless round of worry and fear and doctor's offices!

A quick overview:

My oldest is six, in first grade, and recently diagnosed ADHD. No, we are not taking any meds for this--he is getting some behavioral therapy at school and I am trying to get an appointment at a clinic about forty-five minutes away that also does behavioral therapy as we would like to make medication a last resort. I am open to medication in the future if necessary but with all of the not-so-great side effects that come with, we'd like to give the alternatives a chance first. However, his hyperactivity at home and at school certainly does make everything a little bit more difficult :p

Next up is the two year old. He's two. I'm not sure much more needs to be said LOL

And then there is our baby, three months old, in congestive heart failure due to two heart defects and an artery that isn't growing properly. We live month-to-month, wondering if this cardiologist appointment is the one where we have to schedule open heart surgery for our tiny little girl. She is on medications to help her breathe and at night I lie there and listen to the raspy little sounds she makes as she falls asleep until she is relaxed enough that her breathing eases and goes almost silent. I worry over every cough and hitch, wondering if now is the moment we rush her to the hospital. Sometimes I think my worry is out-of-place because overall, she is doing very well. She is alert and active and happy. She smiles and laughs and surprises doctors with how strong and ahead of her milestones she is. But she is barely growing and without her medications, her heart races and she struggles to breath. Her heart murmur from the blood flowing the wrong way through the holes in her heart is so pronounced you can hear it with your bare ear--instead of the steady thump thump thump, you hear whoosh whoosh whoosh.

People tell me often that they just KNOW she'll be fine so I shouldn't worry. In many ways, I understand why they say things like this--they desire to be reassuring, to ease some of the pressure and fear that worrying about a child with a potentially life-threatening condition brings. But they can't know, no one can, and sometimes it just makes me angry that they say such things. I'm sure I have been guilty of it in the past as well--you just don't think of it the same way before you are in the middle, you know?